Contesting Aging and Loss 9781442670099

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Contesting Aging and Loss

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Contesting Aging & Loss

University of Toronto Press

edited by Janice E. Graham and Peter H. Stephenson

Copyright © University of Toronto Press Incorporated 2010 www.utphighereducation.com All rights reserved. The use of any part of this publication reproduced, transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, or stored in a retrieval system, without prior written consent of the publisher –– or in the case of photocopying, a licence from Access Copyright (Canadian Copyright Licensing Agency), One Yonge Street, Suite 1900, Toronto, Ontario M5E 1E5 –– is an infringement of the copyright law. LIBRARY AND ARCHIVES CANADA CATALOGUING IN PUBLICATION

Contesting aging and loss / edited by Janice E. Graham and Peter H. Stephenson. Includes bibliographical references and index. Issued also in electronic format. ISBN 978-1-4426-0100-0 (pbk.). –– ISBN 978-1-4426-0089-8 (bound) 1. Older people –– Social conditions. 2. Older people –– Psychology. 3. Older people –– Social networks. 4. Aging. I. Graham, Janice Elizabeth, 1958- II. Stephenson, Peter H. HQ1061.C649 2010

305.26

C2010-901434-0

We welcome comments and suggestions regarding any aspect of our publications –– please feel free to contact us at [email protected] or visit our internet site at www.utphighereducation.com. North America 5201 Dufferin Street Toronto, Ontario, Canada, M3H 5T8 2250 Military Road Tonawanda, New York, USA, 14150 ORDERS PHONE: 1-800-565-9523 ORDERS FAX: 1-800-221-9985 ORDERS EMAIL: [email protected]

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This book is printed on paper containing 100% post-consumer fibre. The University of Toronto Press acknowledges the financial support for its publishing activities of the Government of Canada through the Book Publishing Industry Development Program (BPIDP). Designed by Daiva Villa, Chris Rowat Design. Printed in Canada

Contents

Preface Introduction

vii

The Experience of Loss and the Range of Contestation

ix

Janice E. Graham and Peter H. Stephenson

part i overview: paradigms and perspectives Chapter One

Age and Time: Contesting the Paradigm of Loss in the Age of Novelty 3 Peter H. Stephenson

pa rt i i local understanding and knowledge about aging –– how seniors see it Chapter Two

Losing and Gaining: About Growing Old “Successfully” in the Netherlands 27 Margaret von Faber and Sjaak van der Geest

Chapter Three

Empowering Knowledge and Practices of Namaqualand Elders 47 Robin Oakley

Chapter Four

La Buona Vecchiaia: Aging and Well-Being among Italian Canadians 63 Sam Migliore and Margaret Dorazio-Migliore

pa rt i i i illness, indignity, and stigmatization Chapter Five

Drunks, Bums, and Deadbeats? A Biographical Perspective on Gender, Aging, and the Inequalities of Men 87 Cherry Russell

Chapter Six

Dignity and Loss: Implications for Seniors’ Health in Hospitalization Narratives 103 Christina Holmes and Peter H. Stephenson

pa rt iv embodiments and disembodiments Chapter Seven

Embodied Selfhood: Ethnographic Reflections, Performing Ethnography, and Humanizing Dementia Care 125 Pia C. Kontos

Chapter Eight

The Science, Politics, and Everyday Life of Recognizing Effective Treatments for Dementia 153 Janice E. Graham

pa rt v practices and policies Chapter Nine

“Them” are “Us”: Building Appropriate Policies from Fieldwork to Practice 177 Janice E. Graham

Appendix

Important Web Resources for Students and Researchers Notes on Contributors Index

199

195

191

Preface

This book is intended for students, interested professionals, social scientists, and other scholars who are concerned with the many issues surrounding the topic of aging. The dominant paradigm of loss in the study of aging has seeped into the practices of engaging elders in many societies on terms that are simply not their own –– this paradigm leads to a constant reading of the experience of aging as decline. In this volume, we take seriously the proposition that aging is complex and multifaceted and encompasses many experiences; and sometimes these experiences do entail a deep sense of loss. But there are also fulfillments, gains, resistance, and struggles both won and lost –– sometimes even postponed –– throughout the changes that transpire in all our lives. In the main, the book contests the idea that much of what we experience as we age is simply “inevitable.” Such a perspective robs us all of power, agency, and the ability to determine and actually live fulfilled lives –– whether we are engaged in the study of aging, or are simply growing old. As such, the book is meant as a corrective based on ethnographic evidence. The stories presented here speak to a dubious connection of the aging and loss paradigm with another dominant paradigm: an economic one that ignores the common determinants of unequal power, resources, and income. That economic story has often ignored the role of social determinants in healthy aging and, more specifically, social inclusion and meaningful relationships, as defined by the elderly themselves. The text contains many quotations from seniors whose lives in many parts of the world reflect a richness that is generally lost in more prosaic studies of aging which depend almost solely on statistical information and which often paint an overly simplistic image of despair as numbers dwindle and graphs arc ever downward. The lively voices VII

P R E FA C E

found in many of these chapters are not shy about stating the ways in which the widely held notion that they are in decline has been a far larger problem than many other features of their lives. For policy makers, the take-home message is to attend to these voices, and to design and build programs that better understand and address the social determinants of healthy aging and social inclusion throughout the life course. The editors wish to thank Anne Brackenbury and the editors at the University of Toronto Press for their help in bringing this book to publication, and thank the authors for their forbearance and patience.

VIII

INTRODUCTION

The Experience of Loss and the Range of Contestation

Janice E. Graham and Peter H. Stephenson

Contesting Aging and Loss actively engages and contests the aura of inevitability and loss deeply associated with aging, particularly in Western societies. Upon critical reflection, many theories of aging and the practices associated with them –– both in research and in clinical contexts –– reveal more about the conceptualization of age by researchers, health-care providers, and policy makers than they do about the everyday lives of older people around the world. In these pages we find instead that aging is embedded in dense webs of experiences mediated by what are often increasingly extreme imbalances of power. It is the disparity in power that most often leads to losses –– of self-determination, rights, and control over many aspects of an older person’s life. The contributors to this volume do not avoid these sites of encounter, which occur both in the community but perhaps more frequently in institutions that use the experience of aging for ends that are contrived to meet their own requirements, often at the expense of the elderly. Elderly persons often interpret their experience very differently from those whose task is to assist them. The latter far too often seem to take their duties as a license to control older persons for purposes that have little to do with those older persons’ own human requirements and desires. Extensive ethnographic interviews with older persons about what they think constitutes successful aging are one method by which to begin to understand the many adjustments that older persons make, adjustments that they regard as contributing integrally and positively to the quality of their lives. The chapters in this text take seriously the proposition that care IX

INTRODUCTION

for an aging person is about the elderly –– not simply about the caregiver, however important that person might be. So, throughout this volume, the voices of seniors can be heard in contexts where they all too often are ignored or have no say in the many decisions that define much of their lives. To begin this exercise, the central cultural construction of age and its envelopment by a peculiarly linear notion of time is examined in Chapter One. Peter Stephenson shows that time and age have been intricately linked in ways that we are only beginning to appreciate, and that the central notions of loss and decline derive from the way in which time is regarded as “passing.” We are introduced to the idea that in much of Western society, our understanding of aging is deeply rooted in both a science and economy that value the idea that newness, or “novelty,” is the essence of living. In this view, time is both a linear process proceeding from start to end, and a thing that can be produced. Stephenson argues that this idea is so foundational that it generally escapes our notice because we simply assume it to be true that time can be “saved,” for example, or that it eventually always “runs out.” He argues that this is also attached to the idea that aging is irreversible, inevitable, and a decline that ends in severely compromised experiences of living. Much research on the biology of aging and the notion of time in physics contradicts the idea that both aging and time are universals of some kind; they are, instead, relative. Considerable differences in the ways in which both time and aging are experienced in non-industrial cultures, and described in the accounts throughout this volume, lend empirical (ethnographic) support to these alternative conceptualizations of aging. Stephenson’s chapter concludes with a critique of the ways in which linear time is used in clinical assessments of very normal elderly persons in order to assign some individuals to the category of those predisposed to developing dementia when they might actually just be more private and reflective, or simply choosing to actively resist testing. Stephenson (and later, in Chapter Eight, Janice Graham) shows us that by privileging the notions of what counts as social capital (novelty, active responsiveness, outgoing behaviour, executive functions), we have built clinical markers that recognize and value self-aggrandizement (selling oneself) from the cradle to the grave. Thus, novelty-seeking behaviour is privileged as healthy and normal, while quiet listening, observing and reflection, and active resistance are not. In this way we both “contest” some of the most basic assumptions about aging by suggesting that these are reflections of the society that has produced them, and not a bedrock part of the reality that surrounds us. The concept of “successful aging” that has been advanced as a conceptual tool and an idealized goal for seniors has caused confusion and misunderstanding between health professionals and policy makers on the one side, and X

INTRODUCTION

many older people on the other. This stems from the dual use of the idea, which sees it used as both a means and an end, as an external measure and a personal goal. Margaret von Faber and Sjaak van der Geest conducted research among a group of older (85-plus) people in a mid-sized town in the Netherlands and discovered that these seniors rejected the idea that being “successfully old” meant that one was healthy and autonomous and able to live without the help of others. Physical strength and health, the seniors with whom they spoke argued, could hardly be called an achievement or be qualified as “success.” In Chapter Two, von Faber and van der Geest describe “successful aging” instead as an artful adjustment to changing circumstances that they understand very well. Older people who keep their good spirits in the face of the numerous losses that come their way are regarded as “successful.” Those who manage to keep their social network alive and continue to attract friends and relatives in spite of their own restricted mobility are widely regarded as living successfully. The secret of “success,” the Dutch elders reveal, lies in adjustment. Despite their own feelings of having successfully adjusted to serious challenges associated with aging, employing externally imposed objective definitions of what constitutes “successful aging” would have resulted in virtually none of their participants’ actually meeting the criteria. The older people described by von Faber and van der Geest illustrate their views by narrating experiences from their own lives. These are embedded in the chapter as case studies, where older people describe, in their own words, what success means in the face of the challenges that aging has brought to them. The notion of “success” advanced by these very old individuals from the Netherlands is not unlike the adaptations that Robin Oakley describes being made by seniors living in the former reserve area of Namaqualand in South Africa in Chapter Three, or that are revealed in Chapter Four by Sam Migliore and Margaret Dorazio-Migliore in their description of Italian-Canadian seniors’ view of “the good old age” (la buona vecchiaia) as something to be managed in a spirited way. Both the Dutch and the Italian-Canadian seniors view “loss” as a much more multifaceted experience than either “successful” aging theory or popular notions of decline would suggest. For example, South African Nama elders’ longstanding resistance to colonially imposed constraints on their lives is densely embedded in kinship networks. The ways that elderly people have become empowered in Namaqualand hinge on the survival and use of traditional knowledge about their place in a rapidly changing world. Counteracting the impact of their own enforced migrant labour away from traditional lands, Namaqualand seniors today bring an intimate knowledge of land use, medicinal and healing knowledge, traditional practices, and kinship organization into a context where they have been guaranteed land access for housing XI

INTRODUCTION

and grazing rights. Moreover, some aspects of the peasant-based gerontocracy –– that is, rule by elders –– continue into the present, with youth heeding the wishes of elders and putting them at the centre of the extended family. They bring these into play to resist the many losses –– personal and collective –– that they confronted during the long years of colonial oppression throughout the twentieth century. It is precisely because they retain (and have not “lost”) traditional knowledge that they are successful in contesting the many forces that make their lives difficult as they age. These first chapters are all about making arrangements –– adjustments –– to deal with changed lives, and it is significant that it is the artful negotiation of problems that elderly people choose to see as defining their experience. The solution, not the problem, represents the way in which aging is experienced in a positive fashion. In Chapter Four, Migliore and Dorazio-Migliore aptly weave together the artful negotiation of social spaces in the context of change with traditional concepts. They describe the range of meanings people associate with the concept of la buona vecchiaia and its many implications for the quality of life of older Italian Canadians, who actively seek to promote wellbeing in their later years in order to manage life’s many setbacks. This form of management, like that exemplified by the Dutch seniors described in Chapter Two, is deeply embedded in social networks. And, like the activities of the Namaqualand seniors, it relies on traditional forms of knowledge and understanding. It is not grounded in a universe of novel ideas and practices, but rather situated within relevant traditional language, concepts, and practices. In all three of these chapters we see older people in the Netherlands, South Africa, and Canada successfully navigating some difficult emotional and physical terrain, mainly without the assistance of others intervening on their behalf. These are descriptions of the many ways in which agency is manifested in the lives of older people, even where a superficial examination would appear to focus just upon various forms of loss. A linear model of “losses” –– leading eventually to the loss of life that is so common to studies in biomedicine and some areas of gerontology –– is soundly contested by the rich and varied experiences that people have throughout their lives, filled as they really are with ups and downs, and by the small triumphs that people experience in overcoming both trivial and major difficulties. One of the great challenges associated with navigating old age is the lack of resources associated with declining incomes and the increased costs of looking after oneself and, perhaps, a partner or adult children whose lives have been compromised by disability of some kind. This strikes most at those older persons who are poor and isolated. Because, at least in the wealthiest countries, there are by far many more older women than older men, aging has often XII

INTRODUCTION

been constructed by both researchers and policy makers as primarily a women’s issue. Indeed, the older the cohort among the elderly, the higher the percentage of women it contains in these countries. In addition, elderly women are often relatively impoverished and powerless in societies dominated both by men and, especially, by the affluent members of their society (who are often one and the same). There are many studies in the feminist discourse on aging which substantiate the difficult problems that older women confront, but Cherry Russell, in Chapter Five, focuses on the social networks and isolation experienced by relatively powerless older men. She suggests that the emphasis on older and poor women, coupled with the view that older men are relatively privileged, has tended to obscure the plight of those men who are poor, and whose numbers are substantial, even if they represent a relatively smaller proportion of the elderly. In her case studies Russell highlights the plight of many men whose experiences have been shaped within the framework of Australia’s class structure as defined by their labour in particular times and places. The insecurity of their work simultaneously exposed the men Russell describes to resources (accommodation, meals, and other men) and vulnerabilities (work-related injury, a high-risk male lifestyle, a culture of heavy drinking, and a general lack of “care”) that have provided little support for securing permanence in their lives. Therefore, many of the men with whom Russell spoke have been increasingly vulnerable to the effects of economic and social change as they have aged. She concludes that “a political economy of well-being, rather than a paradigm of aging as biomedical loss, is the more fruitful model to guide research and policy” (p. 100). The principal loss that many elderly people experience is an economic one associated with their marginalization as members of a society accorded little respect because they no longer are regarded as “productive.” Russell’s chapter brings the forces of power and marginalization into sharp relief by allowing us to hear the voices of older, disenfranchised Australian men. When illness strikes the lives of older persons, they enter a world of institutions and practices that often seems to make their lives more difficult, rather than affording them some measure of relief. When seniors are hospitalized for acute illnesses and medical procedures, they confront a system that seems to conspire against them while promising help. In Chapter Six, Christina Holmes and Peter Stephenson feature excerpts from interviews with people hospitalized in Victoria, British Columbia, which reveal the many ways in which seniors often struggle to maintain their dignity in the context of even relatively brief hospital stays. Importantly, the journeys to, within, and home from hospital can be perilous in ways that service providers do not appear to understand. Older adults have a risk of increased health complications when they are hospitalized, XIII

INTRODUCTION

including very serious infections that in turn lead to prolonged stays (elevating risk even more), overall poorer health and suffering after discharge, and even death. Holmes and Stephenson point out that the high mortality rates of seniors in acute-care hospitals are not simply a result of declining health. While their admission into hospital may be the result of an accident, a minor procedure or a set of diagnostic tests, exposure to various diseases in hospital renders older patients extremely vulnerable to the risk of infection. The image of loss associated with seniors entering acute-care hospitals for long stays, and possibly dying there, sometimes has less to do with their medical condition than with the condition of the hospital to which they are admitted. In several dialogues reported in this chapter, the patients themselves attribute the healthcare system’s decline to decreases in the number of workers and a lowered standard of care. How seniors experience and view acute-care hospitalization therefore has profound implications for better hospital practice and public health in general. The voices of the seniors in Chapter Six echo and affirm Russell’s call in Chapter Five for a greater focus on policy rooted in an understanding of what constitutes well-being within a framework of imbalances of power. What happens when people become increasingly isolated in their own restricted worlds resulting from pathological processes such as Alzheimer’s disease? The fundamental paradigm of loss in extremis, as it is represented in contemporary psychology and the shared attributes of definitions of dementia, is described in detail in the chapters by Pia Kontos (Chapter Seven) and Janice Graham (Chapter Eight). Social scientists and health-science scholars are now beginning to challenge the loss of self that has been so widely associated with the cognitive deficiencies lying at the core of dementia. The body, however, has not been incorporated into the discourse about diverse representations of the nature of the self and explorations of the experience of having Alzheimer’s disease. In Chapter Seven, Kontos articulates a challenge to the discourse of presumed loss of selfhood in Alzheimer’s disease, one that captures the ways in which selfhood is embodied and reproduced non-discursively through our corporeal actions. With a keen eye for the details of human involvement and meaning-embedded activities, Kontos draws upon the raw data from participant-observation in her ethnographic exploration of selfhood amongst a group of cognitively impaired residents of an Alzheimer’s support unit. We become witness to people following deeply habituated, symbolically meaningful practices expressed as polite greetings or responses, as preferences for coffee and certain foods, or as poignant acts of consolation. Kontos takes the reader on a journey that tracks insights from the phenomenology of Merleau-Ponty and Bourdieu’s theory of habitus and the everlasting imprints of socialization, to empirically rich ethnographic evidence, to argue XIV

INTRODUCTION

that selfhood is embodied and thereby persists despite advancing Alzheimer’s disease. For Kontos, incorporating the body into a rethinking of personhood in dementia is not merely a philosophical exercise, but one that has important implications for health-care policy and improving dementia-care practice. Using drama as a novel method of translating her ethnographic research for front-line dementia-care practitioners, Kontos explores with health-care practitioners in focus-group discussions the breadth and importance of nonverbal communication for self-expression by persons with severe cognitive impairment. Data from self-administered post-performance surveys and the focusgroup discussions themselves indicate both the effectiveness of drama as a knowledge-translation strategy, and the important potential implications of practitioners’ integrating an understanding of bodily expressions of selfhood into their clinical practice. The picture of Alzheimer’s disease, so commonly framed by despair and the idea that a person is lost, is instead movingly described by Kontos in embodied practices –– weaving, singing, knitting –– sustained by individuals who need not always be seen in despair. If we regard emotional and embodied intelligence as part of personhood, as Stephenson argues in Chapter One, then many attributes of a person survive far longer than simple measures of cognitive loss conventionally allow us to believe. This is, as Kontos demonstrates with closely observed ethnographic examples, sustained in the networks of older persons, whose links to one another often persist and are derived from times and places far apart from their current residence. This even includes, for example, shared and extremely negative experiences as Jews in concentration camps in Europe during World War II. Similar to the portraits of cognitively normal adults in our earlier chapters, emotionally charged meaning in old age is not always “heart warming” or laden with positive experiences; it can even include the unspeakable. Personhood is not defined by being able to perform nonsensical cognitive tasks such as repeating one’s phone number backwards (which is really used as a measure in some tests). It is embodied life –– in all its fullness. This reminds us most crucially that to contest loss is not to dismiss it, or to deny it as an experience. Rather, it means confronting, questioning, adapting, negotiating, incorporating, and at times surmounting it in ways that confer meaning onto life. Engaging all these skills is not necessarily an easy task, and it can be made much more difficult in the face of some of the most powerful global institutions, including the pharmaceutical industry and its profit-driven promotion of endless treatments to alleviate one or another aspect of aging. With this in mind, in Chapter Eight Graham grapples with the corporate manipulations that attend Alzheimer’s disease, demonstrating (ironically) how “soft” social science along with clinical research have actually been appropriated XV

INTRODUCTION

by the pharmaceutical industry to promote certain drugs that may or may not actually help people to resist the disease in its early stages. Graham takes a close look at the uncomfortable and ambiguous relationship between caring for and treating people with dementia. Caring about and for people with symptoms of dementia is a category not often recognized as “therapeutic” –– it is far more often treated as custodial work. A medical diagnosis, however, places an individual into an illness or sickness category that thereby allows him or her to receive medical attention, which is seen as clinical treatment. With the broad introduction of anti-dementia drugs in the late 1990s, medical attention in the form of promises of biotechnical intervention via pharmaceutical treatment has become even further removed from care. Writing a prescription is different from caring about and for a person whose compassionate, reciprocated, and meaningful relationships with others have been built over a lifetime. The hope for symptomatic therapies is driven by the desire to maintain and eventually perhaps even restore biological connections (neuropaths) to these past relationships (social-paths). While waiting for this magic pill to arrive, however, there has been a growing recognition among physicians that social and functional activities provide the foundation for a particular quality of life. Clinical attention has moved to acknowledge an interactional person involved with others in everyday activities, rather than the lone disembodied patient. In her chapter, Graham examines this shift in medical diagnostic attention, yet she takes a decidedly cautious stance in welcoming what might be considered a favourable trend in the clinical turn toward patient-centred, individualized assessment, diagnosis, and treatment. Some clinical researchers have turned from the paradigm of loss in their clinical practice and are instead extolling the virtues of Alzheimer’s therapies as improving quality of life. Any small measure from a constellation of behavioural changes that could be defined as a slowing of “loss” is defined as positive in an assemblage of multi-factorial measures now employed by the pharmaceutical industry. In many of the studies, no attention is actually paid to whether this outcome is a product of the activity of the drug or of other (social) practices –– essentially, all the caregiving that is construed as custodial work, rather than as a kind of therapeutic activity. Changes that emerge from an increase in the quality of life associated with predominantly social forces are being systematically ignored as explanations. They are used instead as measures of the success of the drug. In this way, changes in behaviour are always attributed to drug regimes, and never to the increased presence, for example, of a caregiver, or to a richer social life associated with community-based care: field trips, or embodied experiences such as dancing, singing, and knitting groups, as described by Kontos in Chapter Seven. As a medical anthropologist XVI

INTRODUCTION

keenly aware of how engaged and deeply committed researchers in the past have naively become shills promoting industry interests (such as powdered-milk substitutes in calorie-deprived populations who had no access to clean water), Graham asks whose welfare and whose interests are really being served. In the most general terms, psychological theories of various pathologies of aging can be seen, as Stephenson points out in Chapter One, as magnifications of processes that are normative –– that is, widely held conventions about “normal” aging. In other words, from this perspective those with dementia are seen as old, only more so. Ultimately those who suffer from such an old-age–associated dementia confront being seen as non-entities, having lost their sense of self, both to themselves and to others. Despite the continuation of an embodied self described in detail by Kontos in Chapter Seven and expanded upon by Graham in Chapter Eight, the person with Alzheimer’s disease is often denied personhood. This denial can come in everyday interaction or by systemic means and derives partly from the way in which a person is constructed in research. Seniors in particular can be all too easily exploited by others, including some in the pharmaceutical industry whose measures of successful treatment as “lessening losses” can best be described as simply phony. All of the chapters in Contesting Aging and Loss are devoted to deepening our collective understanding of the many ways in which loss is contested in the everyday lives of older persons in social contexts around the world: from Australia to the Netherlands, from South Africa to Canada, and among both people who are relatively privileged and those who are poor, and among those who are variously traditional and modern. The larger forces that impinge on their lives –– multinational corporations, colonial relocations, dangerous work lives, and institutions of total care –– increasingly confront us all in the contemporary era of globalization. The concluding chapter by Graham reviews the various chapters of the text, drawing them together into a forceful policy statement about just what it means to contest loss in these manifold contexts. That people who are old and often vulnerable still manage to contest and resist these forces is more than a hopeful sign; perhaps in the most basic way it is a defining part of the human condition. However pervasive the human experience of loss may be, it is not uncontested, either in lives lived, or in the text in hand. In this sense, simply reading and studying about the subject may be a small act of resistance itself. In that spirit we offer this text to the student and professional alike, both of whom not only may be engaged in preparation for work of some kind with seniors, but whose own lives may ultimately come to embody a similar experience. We also –– both as researchers and in far more personal terms –– offer it as a form of thanks to all the seniors in our lives, for being the exemplars they truly are. XVII

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CHAPTER ONE

Age and Time: Contesting the Paradigm of Loss in the Age of Novelty

Peter H. Stephenson

The irreversible time of production is first of all the measure of commodities. –– Guy Debord, Society of the Spectacle, entry #146

Age and Novelty The social critic Christopher Lasch (1979) claimed that we live in a period characterized by narcissism. Obsessive self-admiration seems to blossom in great imperialist civilizations, from pax Romana to the current Americanpoliced “new world order.” Seen from the perspective of an older generation used to self-sacrifice, many self-aggrandizing excesses found in the emerging “New China” also appear to reflect this (Jiang & Ashley, 2000). Perhaps the enormous reach of the super-powerful state over the lives of its subjects conspires with the compensatory needs of people in such societies to yield delusional notions of self-worth. Imperialists, after all, tend to expand their influence outward, while looking ever more inward. What might be termed “the culture of narcissism” can also be viewed as an intellectual environment where solipsist thought abounds and age becomes an enemy of youth and beauty –– as the latter are so often the currency of self-admiration. The world will cease to exist without the narcissist whose self-referential experience is promoted as universal experience. And so Michael Jackson and Lionel Richie’s lyrics for 3

CONTESTING AGING AND LOSS

“We Are the World” (1985) became the anthem for many of the world’s wealthy, who, in order to address the starving global poor during the great famine in the Sahel, held a concert for them, as the lyrics intone, to “save our own lives.”1 The well-documented emphasis on “youth culture” in marketing and the major industries of the self which focus on the body in consumer culture –– cosmetics, clothing, and many forms of health care associated with the “antiaging” movement –– are an unfailing index of the importance of individuated forms of newness or novelty. The body in consumer culture has become immensely profitable, and to succeed, people must sell themselves. As Featherstone suggests, ... the popular media constantly emphasise the cosmetic benefits of body maintenance. The reward for ascetic body work ceases to be spiritual salvation or even improved health, but becomes an enhanced appearance and more marketable self. (1982: 18)

This became disconcertingly tied to the “successful aging” movement of the late twentieth century, which conflated ideas of health retention and vigour with the notion of “success,” which is really available only to the fortunate few who can afford it. The idea of aging successfully merged far too easily with the promotion of “anti-aging” commercial enterprises and was tethered to essentially individualistic and narcissistic motives, including the notion of accomplishment, rather than social concern over health and well-being (McHugh, 2003; Abraham, 2009). Many critics have suggested replacing “successful aging” with the term “healthy aging,” but this may be something of a cosmetic change in itself. There has also been a proliferation of anthropological studies of “the self,” which have a narcissistic edge that seems elemental to the “reflexive” characteristic of many qualitative research strategies in the anthropology of the moment. Perhaps, by extension, one can claim (and not without irony) that we now dwell in an “Age of Novelty.” It is an age of sound bites, historical amnesia, attention deficit disorder, and fleeting trends that last so briefly that our experience of time feels compressed. What does all of this imply for aging? Among the most deeply held assumptions about aging and longevity appears to be one that Stephen Katz has traced to the Enlightenment project which held “death from old age as the obstacle to be overcome” (2005: 19). As an impediment, age has become commoditized, brokered, commercialized, and the principal object of a vast system of health-care practices that make the elderly the primary target of the political economy of aging (87–91), or what Minkler and Estes (1999) refer to as a “moral economy.” 4

C O N T E S T I N G T H E P A R A D I G M O F L O S S I N T H E A G E O F N O V E LT Y

Before delving more deeply into the cultural dimensions of aging and the critical stance generally taken in this book, a glimpse into the biological dimensions of aging may help reveal how deeply some of our cultural concerns have found their way into the science of aging itself. In addition, some surprising counterpoints to widely accepted notions of aging and loss also appear. For if creatures do not actually age as they are popularly supposed, then the cultural construction of aging to which Katz has deftly drawn our attention comes into sharper relief.

Theoretical Biology: Some Aspects of Aging in Evolution Aging is usually defined in contemporary gerontology as an inevitable process rather than a variable one. Returning to some of the earliest writing on the cellular theories of aging, one can discern the initial conflation of what is a basic but highly variable life process with the more universal notion of decline. The following definition of aging is drawn from a classic article by Harman Denham, the founder of the “free radical” theory of aging in physiology: Ageing2 is the progressive accumulation of changes with time that are associated with or responsible for the ever-increasing susceptibility to disease and death which accompanies advancing age. These time-related changes are attributed to the ageing process. (1981: 7124)

This definition verges on the tautological: a definition constructed entirely in terms of itself (“ageing is ... the ageing process”) and also depends entirely on whatever “time” might mean. This is like saying that aging amounts, over time, to growing old. That this was initially an uncontested assertion indicates a prevailing cultural belief that includes time as a steady, linear trajectory. Denham’s definition of how cells age constitutes aging as a given, rather than advancing it as a conceptual term; and it has until very recently continued to be something assumed rather than something questioned. Aging, in this paradigm, is associated with decline –– essentially, with loss. This situates aging within time as mounting physical failures that rather invariably happen. For scholars interested in the study of culture, such a definition is a “taken-forgranted” belief, one so self-evident that it is “foundational,” situated behind other constructs and underneath the surface of conventional thought. While the biology of aging is not the topic of this chapter per se, it is certainly part of the ways in which we more generally construe aging, and often misunderstand it as well. Theoretical explanations of aging currently in vogue in the biological sciences can usefully be divided into two overlapping groups, which are not entirely mutually exclusive, though they are sometimes treated 5

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that way by researchers who apparently want to discover just one underlying mechanism for aging as “causal” –– the better, perhaps, to patent a treatment. For, above all, the anti-aging discourse sees aging as a disease; this can have terrible consequences for the elderly, who by inference are, as their numbers grow, part of a contagion. Theories of aging tend to focus either on acquired errors or pre-programmed demise. In error theories, damage stemming from encounters with the environment accumulates over time and wears us down. In program theories, genes switch on and off over time and cause the hormones that are said to control aging to change. Related to both of these is the idea that genetically controlled changes to the immune system that protects us are predestined to take place, increasing vulnerability to diseases as immunity “declines.” So from this point of view, we get worn out, but it’s also programmed to happen that way. The attribute that these perspectives have in common is a focus on decline, which obscures a number of evolutionary issues to which we can now turn. Chief among these are the requirement for populations (rather like cells in a body) to actually lose and replace members in order to maintain a balance within the ecological systems within which they are embedded, and the high degree of variation in aging processes, both within and among species. Proponents of an evolutionary point of view note that organisms are actually programmed for survival, not death, so another theory of how aging evolves is required (Kirkwood, 2002). Individual bodily changes that we call aging do of course take place, and (among other things) they are known to be associated with the length of telomeres –– long strands of DNA at the end of chromosomes –– which become shorter with every division of a cell. This is the basis for the deterministic idea that much of what we call aging is programmed to take place. Telomeres seem to possess little important genetic information, but they buffer chromosomes from being damaged during replication. So when telomeres become very short, the information-laden sequences of DNA can more easily become damaged. In humans, most cells seem able to replicate themselves about 50 times, which is called the Hayflick limit (for the scientist who discovered the number). However, when cells stop replicating they become more vulnerable to many processes –– biologists say that they become senescent, or that they age (Cong, Wright & Shay, 2002). All of this has turned out to be very important for understanding many cancers, because in tumour formation cells stop dying and continue to replicate until they overwhelm the tissues around them. They do this via an enzyme called telomerase, which prevents telomeres from becoming shorter. Consequently, in genetics, cancer-cell lines are said to be “immortal.” It seems that every kind of cell can potentially produce telomerase, but it is in the inter6

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est of an organism to allow only a few very specialized cells to exceed the Hayflick limit: mainly white blood cells in the immune system, and sperm cells. All of this entails a simple proposition: aging is a normal process (not a decline), and turning off the process in many kinds of cells results in cancer, thus hastening death. The tradeoff between the processes of allowing a few cells to exceed the Hayflick limit and restricting others from doing so probably has its origins in the evolution of simultaneous but conflicting requirements for tissue repair on the one hand, and tumour suppression on the other, especially among vertebrates (Witzany, 2007; Weinstein & Ciszek, 2002). Some invertebrates and plants have not experienced the evolution of aging in the same ways as vertebrates, and to the degree that they may be said to age at all, the processes are rather different. Within vertebrates, including humans, there is a great deal of variation in the speeds at which all this takes place –– resulting in what we might call relative aging, implicitly making time relative too. For example, many animals (including humans) show evidence of a healthy (not degenerative) slowing of the aging processes when they are maintained at a lower threshold of required caloric inputs, if they maintain a high degree of nutrient density and diversity. Under these conditions, fasting insulin levels and core body temperature drop, and there are changes in metabolic factors that are related to longevity. Some rats can nearly double their average lifespan in these circumstances (see Hursting et al. [2003] for a comprehensive review). In addition, there is now ample evidence that in some species, survival beyond the Hayflick limit can go on for an extended period –– or perhaps the limit does not even really exist for them. Eventually such individuals just cease to experience aging very significantly at a cellular level. Evidently they just go on living until dispossessed of their lives by an unhappy accident, disease or some form of pollution or predation. They may die of many things, but not of old age. Such individuals are not immortal (recall that immortal cell lines are actually cancers); importantly, however, as we currently understand the process, they do not apparently age very much either, perhaps due to a very slow turnover of cells resulting from the simple fact that they do not actually do very much. Among insects, some fruit flies have been shown in repeated experiments simply to cease aging (see Rose et al. [2006] for a comprehensive review). Among invertebrate animals, coldwater clams appear to be the oldest continually living organisms, with a BBC report (2007) noting that an ocean quahog clam, aged between 405 and 410 years old, had been found off the coast of Iceland. The British scientists involved felt the clam “could offer insights into the secrets of longevity” by revealing how it avoided death. The scientists appear not to have seen the irony in the simple fact that they had killed the 7

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clam to determine how old it was, and the primary threat to a whole set of long-lived clams found around Iceland appears to be getting dredged up and killed by scientists, who by now must be their leading cause of death. The cessation of aging and the idea that there is a further stage called “late life” was first described by entomologists in 1992, though observations of it date back at least to 1939. This has been the subject of intense study, theorizing, and speculation in biology, where some evolutionary explanations have been tentatively advanced (Rose et al., 2006; Rose, Rauser & Mueller, 2005). Most of these turn on the lack of impact that such very small numbers of individuals would have on natural selection in large populations, and are summarized as “Hamilton’s Forces,” after William D. Hamilton, the evolutionary biologist who first described how aging could be experimentally manipulated to decelerate or accelerate aging by shifting transition ages between development, aging, and late-life stages in the lives of organisms.3 Indeed, what has now been observed in a number of species is that if individuals live long enough, they actually just stop aging. It is suggested that this may be because what has long been described as “the aging process” ceases to have any evolutionary significance when operating on insignificant numbers of now nonreproductive individuals in species characterized by vast populations –– which characterizes insects in general. The findings in this field have been described by Rose, and others, as virtually a scientific revolution, and a major paradigm shift along the same dimensions as Einstein’s “Theory of General Relativity” in physics. What is proposed in Hamiltonian Theory are three life stages: development, aging, and late life –– and in the latter, aging ceases. The theory associated with the aging stage is, however, still enveloped by mechanistic notions of loss, but importantly, the final stage is not –– indeed, and somewhat ironically, it is seen as a “novel terrain”: This means that we have an entirely new phase of life to explore, because late life has hardly been studied at all. This situation is both exciting and troubling for practicing scientists. The excitement is obvious: there is a wealth of hypotheses about life-history, both physiological and evolutionary, that need to be tested. During development, organismal and cell biology are studied among ages when natural selection is extremely strong. This type of research fits the organism as a virtually perfect machine model of life. During aging, natural selection is collapsing rapidly, and the effects of this are dramatic. For aging, the appropriate research paradigm is the study of the organism as disintegrating machine. As to late life, we have no intuitive concept of how the organism works. That is the problem facing late-life research; it is novel terrain. (Rose et al., 2006: 274–75)

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As long as they are not carried off by disease, violence or accidents –– the probability of which may also increase with population numbers –– there would appear to be no evolutionary “cost” for aging to cease in those who survive aging. There are competing and contradictory forces at work in large populations: the irrelevance of a few individuals of very old age for the survival of the group, and the increasing probability of death for all individuals from some external cause associated with increased population size and density. In the narrow frame between these eventualities there are at least some who apparently do not age much or, in some species, observably at all. Finally –– ironically and paradoxically given the ways in which we conventionally think about aging –– this happens only toward the end of their lives. This means that on biological grounds the description of the aging process as an inevitable death spiral is actually rather shaky, for what is generally described as aging is highly variable, depending on nutritional, genetic and evolutionary factors, and altogether ignores the stage now called “late life” in biological gerontology. This can all fluctuate tremendously depending on environmental and social forces as well. Among social insects, variables such as access to nutrients, workloads, delayed mating, and exclusions of various kinds –– who can eat and mate and who cannot –– all have significance for longevity in late life. In humans, similar factors include income levels, variety of workplaces, age of reproduction, and exclusionary social practices such as racism, sexism, and, of course, ageism –– and these all impact longevity and the ways in which aging is experienced.

Aging and Culture Apart from the models recently used to explain the cessation of aging and the stage of late life in theoretical biology, aging has also been comprehended very differently in both historical and cultural terms; this both contests the notion of inevitable loss and repositions aging within the framework of life. The following ethnographically informed paragraph is offered to represent an alternative construction of aging, and old age, which accounts for much of the information we have learned from non-Western and non-modern cultures where the old are venerated: Ageing is profoundly associated with the process of maturation. Some individuals achieve a deeper understanding of the existential issues associated with living by reflecting on their many and varied experiences. The insights of such people are valued in many cultures that venerate the very old, and are generally described with some kind of word which translates as “wisdom.” There are numerous and wide-spread physical metaphors for the development of subtle complexities with the passage of time –– for example in European languages, wines, cheeses, textiles 9

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and woods are all said to achieve greater depth, patina and value in this way. Refinement is also sometimes associated with age, as is great learning and some special individuals among the very old are felt to be repositories of knowledge, including sacred knowledge or great secrets. These themes are revealed in epic myths and poetry around the world. The terminology associated with this by Indigenous peoples is most often the term ‘elder’ –– and this includes the notion of power and honour as well as influence. An ‘alderman’ is really a version of ‘elder man’ and is a good example drawn from the history of the English language. (Stephenson, 2009: 105)

Appreciating that aging is a profoundly variable embodied experience imbedded in a relativist view of time and space is not exactly commonplace. There have been some ethnographic attempts that depict embodied experience within a much more relativistic notion of time, such as Matt Hodges’ recent The Ethnography of Time: Living with History in Modern Rural France (2007). In this tour de force, Hodges does not really address aging, though much of what he describes holds a great deal of importance for both the concept and the ways in which ethnographic work with older persons could more fruitfully be pursued. Such a perspective appears never to have been contemplated in the field of gerontology, perhaps because it leans so heavily on universalizing ideas about time and its proclivity for measurements of loss. There are some trenchant sociological critiques of the field of gerontology going back over a decade (Marshall, 1996; Gee & Gutman, 2000; Gubrium & Wallace, 1990, among others), but these do not take up time and its connection to both aging and agency. It is my contention both in this chapter and in earlier work, (2009) that what is conventionally termed “the aging process” is especially constrained in both biological and cultural arenas by a notion of linear time still firmly rooted in a now discredited kind of Newtonian physics, which lends it an aura of constancy and universality. Linear time is an idea we can’t seem to live without in a society organized around the industrial production of novelty in its attendant moral economy, but it is far from the ways in which time is understood in many so-called “traditional societies.”

On Economies of Time A culturally grounded and critical understanding of time is important because it frames the whole experience of growing old in post-industrial and industrial cultures where “time” has become a material attribute of our economies. Just as in the biological framework, where aging has long been framed as an inevitable feature of individual experience rather than an evolutionarily variable group process, in cultural terms it is most often framed as 10

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decay and decline, essentially as various kinds of “loss” over time. And what is lost is everything from self-determination to metabolic health. What is meant by “critical” in this essay is rooted in the notion that theory can be invoked in changing society, not merely in explaining it. To this end, we may consider our construction of time as fundamental to all notions of aging in a society that persists in stating baldly that “time is of the essence.” Time is conventionally understood as quantifiable and delimited –– a “thing” that can be “spent,” “saved,” and “lost”; indeed, it is frequently “invested.” “Time is money” is a common phrase, so time can be said to have assumed the status of virtual currency in a temporal commodities market that now operates globally. Time and money are both employed as finite measures, so time is comprehended as a material commodity (Stephenson, 2009: 107). If we accept that time is a commodity, then it follows that it is produced. Because time and money are equilibrated and said to “run out” (have finite ends), they must also be replaced with novel iterations of themselves –– new money, always arriving –– just in time. This kind of Monochromatic Time, or M-Time, as Hall (1983: 48) terms it, can also be “killed”: in other words, it stops. This kind of time is probably crucial to the development of industrial societies as a means of ordering events and controlling labour. It is monochromatic in the sense that it involves doing only one thing at a time in repeating calendrical sequences. Hall contrasts M-Time with Polychromatic Time (P-Time), which engages people with one another in the completion of transactions rather than the production of things. As such, P-Time “is seldom experienced as ‘wasted’ and is apt to be considered a point rather than a ribbon or a road, but that point is often sacred” (46).4 Among industrial and post-industrial nations imbedded within their “moral economy” there is also an underlying pervasive economy of time, but we rarely consider this and its constraining implication for our ability to influence our own lives. The expiration of time requires novelty –– new time must be created to replace old time, because it is an expendable commodity. But how is this new time produced? And what does this imply about aging? Is there a shift in this perspective that coincides with the arrival of postmodernity? To begin with, we are all producers (none are exempt here; I am operating under the looming presence of what is grotesquely called a “deadline” even as I write). Indeed, the time product is so palpable as to be seen; we wear it and call it (rather morbidly as it turns out) a watch. The term “watch” as applied to a portable timepiece stems from the nominalization of the verb “to watch,” which interestingly shares the same root as the term “wake.” “Watch” then has an ominous etymology: it stems from the Old English wæccan, which meant to remain awake, holding vigil over a corpse. Time and personal worth are 11

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fused and worn, as we watch and attend upon our impending demise. After retirement, the classic symbolic gift in industrial societies has long been a watch, for this is when people will literally “have time on their hands,” at least for a while (Stephenson, 2009: 107).5 Few who have worked in residences for the elderly have failed to notice the near obsession many residents have with punctuality. There the elderly line up to wait for meals, wait for visitors, and wait to go on outings, and during their waiting the frequency with which some individuals examine clocks and watches can be quite disturbing. It verges upon an obsession with punctuality in the face of boredom, with losing track of time and of their very selves. This type of institutionalized time (Sheilds, 2002) is partly a creation of the linear M-Time that Hall (1983) describes as simply being in “a rut.” It verges on being a repetition compulsion, but it also leaves a strong impression that the residents are producing time while quite literally on their death watch. Following the death of someone to whom one is close, perhaps the most intimate item one can receive as inheritance is the person’s watch, for it is time-worn, in every sense of the word. Most of us imagine ourselves dwelling in a very mechanistic Newtonian universe –– one of clock time fractioning our notion of temporal flow –– rather than woven into the fabric of Einstein’s “spacetime,” where time and threedimensional space are treated together as a single, four-dimensional object. Spacetimes are the arenas in which physicists say all events take place, but most social science has yet to examine how this might impact our interpretations and representations of history and society, which are entirely based on interpreting material in linear time flow, or Monochromatic Time. We imagine ourselves within progressive time –– moving forward, inevitably, until we reach an end. Moreover, our economy depends upon the introduction of novelty –– not merely in terms of new products, new processes, etc., but implicitly via a steady infusion of new time. This aspect of our experience of aging is quite distinctive, and for the many societies where time has a more eternal presence –– a “now-ness” about it –– aging also has a qualitatively different feel.

Alternative Perspectives: Culture and Time Greenhouse has forcefully suggested in her critique of linear time that we require “an anthropology of time that does not presuppose what time is” (1996: 75). Ethnographic descriptions of alternative understandings such as the “dream time” of the indigenous peoples of Australia or the emergence myths of the Hopi in the southwestern United States are but two among many temporal dynamics at play among peoples of long residence in one place which seem to be closely linked to notions of transformation and manifestation –– to emergence and continuance rather than sequence and direction. The 12

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Australian altjeringa or “dream time” is an immensely complex topic about which a great many volumes have been written. However, among its many intriguing elements is the idea that along with eternal Spirit Beings, everyone has existed before the life of the individual begins, and continues to exist when the life of the individual ends, in the dream time. The manifestations of this are especially to be found in sacred places where actual physical remains can be found (called petrosomatoglyphs by archaeologists). These include the body impressions or footprints of ancestors and Spirit Beings (see Wolf, 1994). This connection to an eternal present is perpetuated via rhythmic activities where we humans experience time very differently: in rituals, singing, dancing, storytelling, painting, and dreaming –– all of which are especially reverenced in association with older people, who are keepers of both knowledge and time. Time in such experiences is very much part of place and is not associated with either arrival or departure, which are colonial temporal rationales fostered by the idea of arriving in a new place and claiming it. Part of emplacement or place-making is actually the process of embedding time within it –– events become inscribed and available as something that builds up in a people’s experience in and of a place. They become situated. As Keith Basso (1996) reminds us in his description of Western Apache, experiences of places as repositories of traditional wisdom and the infusion of space with knowledge are creative, and fundamental to humanity: “As roundly ubiquitous as it is seemingly unremarkable, place-making is a universal tool of the historical imagination. And in some societies at least, if not in the great majority, it is surely among the most basic tools of all” (1996: 6). Benjamin Lee Whorf long ago had something very similar to say about the fusion of place and time among the Hopi: The Hopi conceive time and motion in the objective realm in a purely operational sense –– a matter of the complexity and magnitude of operations connecting events –– so that the element of time is not separated from whatever element of space enters into the operations. (1956: 63)

Such experience is not similarly available to the descendants of the colonial project in what, rather ironically, has come to be called “the New World” –– a novel conceptual entity based on the erasure of the buildup of time in a place and the extinguishment of those who have so long dwelled there, creating it. The colonial project actually requires a temporal dynamic of arrival and a way to rationalize oppression as inevitable and, bizarrely, progressive. Time must pass away, along, apparently, with the prior inhabitants of the place. 13

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Among complex civilizations with temporal alternatives to Monochromatic Time, probably the most studied are the Maya, whose complex overlapping cyclical calendars suggest an interest in the quality of time rather than its quantification. Apparently for the Maya time had no beginning or end, only something like a floating present referenced from a set point –– perhaps the end of the most recent of a series, or cycle, of creations. Time for the Maya seems to be something like wave energy moving through us, rather than us through it. They were particularly interested in the importance of the qualities of time for society-building and decision-making, as are some of their descendants today (Léon-Portilla, 1988; Tedlock & Tam, 1991). From the point of view of the Maya, both ancient and contemporary, their civilization may have subsided, but they still exist in the folds of time, floating in a far more spatial aspect of time than is conventional in our own conceptualization of time. From this perspective, they are not really gone; it is merely we who are adrift from them on an ocean of time, locked in our peculiarly industrial point of view, where the now is continually receding from view rather than being consistently here and present. My own experiences of time through living within what are called “intentional communities” is similar to the place–time conceptualization suggested in the indigenous examples very briefly described above. These are covered in detail elsewhere (Stephenson, 2009) and include what Anderson (1991) calls “messianic time” among the Hutterites in Western Canada. What “intentional communities,” which were created to foster common experiences, tend to share are a high degree of concern with place and a greater veneration of old persons when an unhurried experience of living is promoted. This can be accomplished via certain temporal practices, including “meditative times, multi-generational storytelling, imaginative participatory play and the acceptance of death as normal” (Stephenson, 2009: 101). All of these temporal practices are framed by what we think of as “agency.” Greenhouse puts this very well: “social time is not some universal expression of a preoccupation with intervals inspired by anxiety over death; rather, it comprises very particular improvisations with the cultural meanings of agency” (1996: 7). Both Morson (1994) and Hodges (2007) demonstrate in both theoretical and ethnographic ways how human temporal experience is, as Hodges puts it, “intimately wrapped up with how we experience and conceptualize agency” (2007: 25). In the context of this chapter we can think of agency as simply our ability to act upon the world in ways that we think matter for us –– as a kind of self-determination. This in turn means that a loss of agency in old age is also intrinsic to how we have come to think of time.

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Linear Time and the Elderly Contemporary social science, much like the society in which it is embedded, is literally propelled by the idea of linear time, which it conventionally represents diagrammatically along the x-axis, behind an arrow predictably moving from left to right. Such a construction is important for marketing, profitability, assessment, evaluation, and, of course, for making a name in the arts and sciences as well as in business. The histogram for this is built into virtually every business spreadsheet computer program in existence, and it is the mainstay of scientific representation in every clinical trial and experiment. This left-toright measure of time is pervasive: it is even the way we organize races run in athletic contests. Just look on your television screen: those sprinters, skaters, and marathoners are all moving from left to right in the time stream that we have created to measure performance. The clock is running, too, underneath the fleeting image of those in the race. In this kind of charting, the novel entity is usually introduced as an improvement, whether in the realm of social-scientific theory, or in advertising for household items as “new” and “improved.” This is all deeply implicated in measures of cognitive performance with the elderly, where, for example, time elapsed and accuracy are obsessively tested and re-tested to determine mental competence. Reflective capabilities, by which the subject might inquire into the relevance of these measurements for their existence, are excluded. To measure cognitive performance, an elderly person is often asked to recite her phone number backwards, and the time it takes to do this is measured. Just how could such response times really be important for someone contemplating the meaning of her very existence? How can such a measure really have anything to do, for example, with the ability of a person to listen or to reflect, or with emotional stability? Are there any commonly employed “tests” that measure the reflective, considered, empathic abilities of someone with great experience and wisdom? The answer to this is both yes and no. The concept of emotional intelligence (EI) and the development of some preliminary tests associated with it are increasingly used in the area of employment (Goleman, 1995; Schutte et al., 1998). This is an attempt to move beyond ideas such as “soft skills” or “competence” and the highly individualized concept of “personality” in order to discover and capitalize upon the skills required for people to work together well. This means managing emotions appropriately and effectively; it doesn’t just mean being quiet, or nice, traits that are often stereotypically associated with –– and valued among –– the elderly. Most importantly for the elderly, EI seems mostly to be an acquired characteristic that continues to develop through life experiences. The attempt to create measures for EI may be subsumed broadly under the rubric of social competencies, and ironically has occasioned a widespread and 15

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intense debate within psychology (Roberts, Zeidener & Matthews, 2001). In part because it is a controversial area, and perhaps as well because the elderly are not seen as a population that needs to work, EI doesn’t appear to have much traction in gerontology yet, where cognitive performance and loss are still privileged. The point of this excursion is really to come to that moment where we may ask how all of this talk about linear time actually has an impact upon the elderly, who are far too often understood as decreasingly able and increasingly out of place and time. One feature of personality that is widely held to be pertinent to the discussion of aging in personality psychology is “openness.” This is an index of imagination, aesthetic sensitivity, curiosity, awareness of inner feelings, preference for variety, and demonstrated independence in judgement. Individuals who exhibit high levels of openness are generally able to entertain new ideas and sometimes found to hold rather unconventional values. People who are “open” are also often described by their peers or families as “sensitive”: they are said to experience positive and negative emotions more keenly than more “closed” individuals (Tyler & Schuller, 1991). Another notable element of this personality is novelty-seeking behaviour. It is thus assumed that people who are not “open” all must fall into the categorical antithesis: “closed.” There is no room in this dichotomous way of thinking for a person endowed with quiet acceptance. It is widely observed that people with a neurodegenerative disease diagnosis become less open to novelty. It is also widely and popularly believed that this is, at least partly because seeking out new experiences would require significant cognitive resources that persons with dementia no longer have, or have only in diminished form. This is usually described as reduced capacity and always measured in terms of diminished cognitive skills. Popular resources often frame neurodegenerative diseases in this manner.6 Many individuals with neurodegenerative disease certainly do develop pathological mental rigidities that are a result of changes to parts of the frontal and temporal lobes resulting from stroke, trauma, infection or other types of physical damage. One certainly cannot dispute that such changes happen, or that people are not really damaged. My aim is rather to note that the measurement of such changes happens within a context in which they are understood as extreme examples of normal aging, which is essentially constructed as “prepathological,” just as certain personality features are sometimes featured as “pre-disposing.” This simply means that a disease state is imminent within a current state. It is also important to recognize that many of the measures diagnostic of this condition are cognitive, and that they can put those who are quiet, less given to verbalizing, and whose lives are quite serene at a disadvantage –– they may be seen to be susceptible to a diagnosis based less on their 16

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actual emotional state than on their lack of interest in novel experience during a historical period that expects and respects little else. A more robust set of measures including emotional intelligence would help to avoid this situation, but the idea is still widely resisted –– indeed, derided –– in some quarters. Locke (2005), for example, has asked rhetorically, “What does EI not include?” and prefers to call the abilities attributed to EI as simply forms of “skill” (though he doesn’t clearly define what that might actually be; he simply excludes it from what he does define as intelligence and emotion). The familiar can become a refuge when daily living becomes a challenge, and small events begin to loom large in people’s experience. This can happen when people slow down, their vision begins to fade, or they have balance or mobility problems –– it is not necessarily a feature of an increasingly rigid personality or cognitive loss. A very basic question we might ask about the way in which neurodegenerative diseases and other dementias are frequently framed as cognitive loss and rigid behaviours in a narrowed world, is how any other ways of understanding such people can fruitfully be entertained. For these are people whose most elemental being –– their embodied person –– has come to represent the ultimate social pathology: that of simply being old in a culture that values little but novelty. What happens to people who are relatively alone in a society from which they are also excluded and where they are systematically marginalized as irrelevant or, worse, seen as a dangerous demographic surplus? What are we to make of a private and contemplative individual in such a framework, if our understanding of pathology is in part an extension of the way in which general aging is posited? Perhaps such an individual is simply located at the more extreme end of a continuum that begins with the pervasive notion of loss and does not include ideas of successful adjustment, serenity, or acceptance, for example. The ultimate dementia may actually be social: the construction of a double-bind world in which the old are required to become renewed via the replacement of their increasingly fragmented selves with cyborg implants (organs, valves, and electronics). This can only reinforce the notion that aging is not a meaningful part of living and that death is a form of pathology.

Some Concluding Remarks on Creating Time The diminution of powers, whether they be cognitive, economic or political are conveyed by the conventions of much of gerontology and by its practices focused on the body. Intimations of gain that might be associated with a wisdom afforded by hard-won experience and advancing years, or the development of emotional balance –– even serenity –– in the face of existential experiences such as pain are rarely advanced as the hallmarks of “successful” or “healthy” aging. The dominant discourse of health and success appears to be more often 17

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associated with the retention of youthful characteristics among individuals, measured in linear time, rather than with the emergence of wisdom grounded in introspection. In part, this is a cultural reading of aging particular to the industrial and post-industrial landscape in which most of us involved in this discourse now live. The primary metaphors of this existence are industrial and mechanical: eventually, we simply “wear out” if we do not succumb to some form of “breakdown” beyond our capability for “repair.” Throughout all of this our cognitive performance on often nonsensical memory tasks and our interest in new experiences are treated as diagnostic of our mental capacity. There is much to support Larry Dossey’s assertion (1982: 50), made more than a generation ago, that many aging patients with cardiovascular disease are actually “time sick” –– experiencing both increased hypertension and higher rates of heart attacks due to physiologically expressed symptoms grounded in a deeply internalized sense of urgency, which is associated with a cultural obsession with novelty. Conversely, patients with symptoms from virtually every kind of degenerative disease who learn to expand their temporal awareness through various forms of meditation and relaxation therapies tend to live longer and certainly experience significantly less pain than others (Goleman & Gurin, 1993). Many analgesic drug therapies also appear to work by altering the embodied experience of linear time, leading to the sensation of drifting in both time and space, of disembodiment. With anaesthetics, the experience is one where time collapses completely and we are not aware of its “passing” at all. This has long mystified investigators who assume that the anaesthetic drug somehow creates this experience, but cannot apparently conceive of the idea that the experience of “time passing” is actually a cultural construct in the first place, and that anaesthetics simply disconnect our culturally embodied selves from the way in which we literally make time happen by creating it. Time isn’t something “out there” in the first place; it is a product of the same system that anaesthetics shut down. This is the arena of “spacetime,” where time is no longer experienced as a constant, but becomes entirely relational –– even disconnected or absent. Time can be experienced as a tempo: slow or fast; it can expand and contract, or we can even experience ourselves outside it altogether when our self –– our identity –– is deeply absorbed in the moment. This can also be understood as a characteristic of persons who have become contemplative, quiet, adapted, and serene and focused on the present, rather than the unknowable future. Young children experience this sense of the present and actually have to be taught a linear sense of time; indeed, it is one of the first tasks we set ourselves as teachers and parents. Disquietingly, children wear toy watches in the dom-

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inant culture as they learn to “tell time” on an instrument with both a “face” and “hands.” And so time becomes personified, and part of them for a lifetime (Stephenson, 2009). If we accept that time sickness might be a product of the Age of Novelty, how might we recognize and treat persons who possess great experience –– who are simply old? It is now often policy to develop “culturally sensitive” practices in the face of our diverse population, and here I plead for the same kind of understanding for people who are older than those providing the services they require, in ways they deem relevant. To a certain extent, this is being done in progressive institutions and through a re-thinking of many alternative experiences of aging such as those described in this volume. But what are we to do about supplanting the underlying construction of inevitable loss that has for so long been pervasive in the study and the experience of aging? This is a tall order, to be sure, and not without many attendant problems –– which certainly include a refusal to see real losses where they do occur, possibly reinforcing already too common forms of neglect. If now we tend to see loss everywhere, replacing that projection with a refusal to see it where it does exist would not be helpful either. I hope we can begin with a constructive critique of where we are now; we do not need something completely “new,” for that would represent yet another turn on the wheel of alienation in this, the Age of Novelty. We require a re-thinking of some very deep assumptions about the universe in which we live and our experience as beings that produce time. Perhaps we might just begin by trying to change from being producers of time, to those who create it, in every age of our existence. Creation is an essentially artistic endeavour, one where individuals matter; production is an industrial one, where individuals’ product matters, but they themselves do not. As creators of time, we may come to see it as our ally rather than the eternal despoiler. Emily Dickinson, in one of the poems in her collection “Time and Eternity,” puts the matter eloquently: Look back on time with kindly eyes, He doubtless did his best; How softly sinks his trembling sun In human nature’s west!

Notes 1. The chorus, in part notes that by giving the wealthy will save themselves: “We Are the world, we are the children/We are the ones who make a brighter day/So let’s

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2. 3.

4.

5.

6.

20

start giving/There’s a choice we’re making/We’re saving our own lives/It’s true we’ll make a better day ...” (Jackson & Richie, 1985). The spelling “aging” will be used throughout this volume, except where “ageing” has been cited in a direct quotation. Hamilton’s Forces of Natural Selection provide a framework for understanding how natural selection works from the earliest ages, for the timing of aging and its cessation, as well as for the very existence of what we call aging (Hamilton, 1966). Hamilton’s forces work on the evolution of social life (Hamilton, 1964) is also considered a landmark in theoretical biology and has deep implications for aging as well, for social life alters all the parameters of aging in populations. I have chosen to employ Hall’s (1983) contrast between monochromatic and polychromatic time here because it makes what is essentially a lived social distinction between the two experiences. Other authors writing on the anthropology of time have employed various dichotomies. These include Gell’s (1992) distinction between “A-series” and “B-series” time, and Anderson’s (1991) and Benjamin’s (1968) contrast between “historical” and “messianic” forms of time. Gell’s distinction depends on the idea that there is a “real” or ontological time outside of its cultural variations and I don’t find it particularly useful. Indeed, physicists treat time as fused to space –– for them it is not really a thing at all but a product of other forces –– gravity in space. Greenhouse (1996) perhaps more helpfully sees all time as culturally constructed and she critiques constructions of linear time as related to power structures. She is not deeply ethnographic in her work and so tends to ignore its social reproduction in the everyday lives of people. Hodges’ (2007: 3–33) very useful review of these and other authors leads him to adopt a more phenomenological version of temporality in his own treatise on time in rural France, which emphasizes the concept of la durée –– the continuance of the past in the present as embodied experience. My emphasis with respect to aging is similar to Hodges; I have only chosen Hall because of his accessibility for many readers and because his distinction works well with some of the central issues attached to aging. Watches also have an instructive history, and have long been associated with youth, wealth, achievement, and identity –– with what would now be called “successful aging.” For example, Diego Velázquez (1599–1660) painted a now famous portrait of the very youthful (Infanta) Maria Teresa of Spain “with two watches,” symbolizing great wealth (early watches were extremely costly) and the surfeit of time she possessed due to her youth; the painting is in the Kunsthistorisches Museum, Vienna. See, for example, the University of California, San Francisco, website dealing with “Memory and Aging”: .

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References Abraham, C. 2009. “The Quest for the test tube of youth: Anti-aging research.” The Globe and Mail Oct. 10: F1, F6, F7. Anderson, B. 1991. Imagined Communities: Reflections on the Origin and Spread of Nationalism. Rev. ed. London: Verso. Basso, K. 1996. Wisdom Sits in Places. Albuquerque: University of New Mexico Press. BBC News. 2007. Ming the clam is ‘oldest animal.’ Oct. 28, Online: . Benjamin, W. 1968. Illuminations: Essays and Reflections. Ed. H. Arendt. New York: Schocken. Cong, Y.S., Wright W.E., and Shay, J.W. 2002. “Human telomerase and its regulation.” Microbiology and Molecular Biology Review 66.3: 407–25. Debord, G. 1983. Society of the Spectacle. Detroit: Black and Red. Denham, H. 1981 (November). “The ageing process.” Proceedings of the National Academy of Sciences, USA, Medical Sciences 78.11: 7124–28. Dickinson, E. Collected poems online. . Dossey, L. 1982. Space, Time and Medicine. Boulder, CO: Shambhala. Featherstone, M. 1982. “The Body in Consumer Culture.” Theory, Culture & Society 1: 18–33. Gee, E.M., and Gutman, G.M. (Eds.). 2000. The Overselling of Population Aging: Apocalyptic Demography, Intergenerational Challenges, and Social Policy. Don Mills, ON: Oxford University Press. Gell, A. 1992. The Anthropology of Time: Cultural Constructions of Temporal Maps and Images. Oxford: Berg. Goleman, D. 1995. Working With Emotional Intelligence. New York: Bantam. Goleman, D., and Gurin, J. (Eds.). 1993. Mind Body Medicine. New York: Consumer Reports Books. Greenhouse, C. 1996. A Moment’s Notice: Time Politics Across Cultures. Ithaca, NY: Cornell University Press. Gubrium, J.F., and Wallace, J.B. 1990. “Who Theorises Age?” Aging and Society 10: 131–49. Hall, E.T. 1983. The Dance of Life: The Other Dimension of Time. New York: Doubleday. Hamilton, W.D. 1964. “The genetical evolution of social behaviour I and II.” Journal of Theoretical Biology 7: 1–16; 17–52. Hamilton, W.D. 1966. “The moulding of senescence by natural selection.” Journal of Theoretical Biology 1: 12–45. Hodges, M. 2007. The Ethnography of Time: Living with History in Modern Rural France. Lampeter, Wales: The Edwin Mellen Press.

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Hursting, S.D., Lavigne, J.A., Berrigan, D., Perkins, S.N., and Barrett, J.C. 2003. “Calorie Restriction, Aging, and Cancer Prevention: Mechanisms of Action and Applicability to Humans,” Annual Review of Medicine 54: 131–52. Jackson, M., and Richie, L. 1985. “We Are the World.” Lyrics, online. . Jiang, Y., and Ashley, D. 2000. Mao’s Children in the New China: voices from the Red Guard generation. London: Routledge. Katz, S. 2005. Cultural Aging: life course, lifestyle, and senior worlds. Peterborough, ON: Broadview Press. Kirkwood, T. 2002. “The Biology of Aging.” Mechanisms of Ageing and Development 123.7: 737–45. Lasch, C. 1979. The Culture of Narcissism: American life in an age of diminishing expectations. New York: Norton. Léon-Portilla, M. 1988. Time and Reality in the Thought of the Maya. Norman: University of Oklahoma Press. Locke, E.A. 2005. “Why emotional intelligence is an invalid concept.” Journal of Organizational Behavior 26: 425–31. Marshall, V.W. 1996. “The State of Theory in Aging and the Social Sciences.” Pp. 12–30 in R.H. Binstock and L.K. George (Eds.), Handbook of Aging and the Social Sciences. 4th ed. San Diego, CA: Academic Press. McHugh, K. 2003. “Three Faces of Agism: society, image and place.” Ageing and Society 23: 165–85. Memory and Aging Center, University of California at San Francisco. 2009. “Social Behavior & Personality.” . Minkler, M., and Estes C.L. (Eds.). 1999. Critical Perspectives on Aging: the political and moral economy. Amityville, NY: Baywood Publishers. Morson, G. 1994. Narrative and Freedom: the shadows of time. New Haven, CT: Yale University Press. Roberts, R.D., Zeidener, M., and Matthews, G. 2001. “Does Emotional Intelligence Meet Traditional Standards for an Intelligence? Some New Data and Conclusions.” Emotion 1.3: 196–231. Rose, M.M., Rauser, C.L., and Mueller, L.D. 2005. “Late Life: a new frontier for physiology.” Physiological and Biological Zoology 78.6: 869–78. Rose, M.M., Rauser, C.L., Mueller, L.D., and Benford, G. 2006. “A Revolution for Aging Research,” Biogerontology 7.4: 269–77. Schutte, N.S., Malouff, J.M., Hall, L.E., Haggerty, D.J., Cooper, J.T., Golden, C.J., and Dornheim, L. 1998. “Development and Validation of a Measure of Emotional Intelligence.” Personality and Individual Differences 25.2: 167–77.

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Sheilds, R. 2002. The Virtual (Key Ideas). London: Routledge. Stephenson, P.H. 2009. “Lessons from Abroad: aging, agency and intentional communities.” Pp. 101–18 (Chapter 5) in D. Cloutier-Fisher, L. Foster, and D. Hultsch (Eds.), Health and Aging in British Columbia: Vulnerability and Resilience. Victoria, BC: Western Geographical Press. Tedlock, B., and Tam, N. 1991. Time and the Highland Maya. Albuquerque: University of New Mexico Press. Tyler, T.R., and Schuller, R.A. 1991. “Aging and attitude change.” Journal of Personality and Social Psychology 6.5: 689. Weinstein B.S., and Ciszek, D. 2002. “The Reserve-capacity Hypothesis: evolutionary origins and modern implications of the trade-off between tumor-suppression and tissue-repair.” Experimental Gerontology 37.5: 615–27. Whorf, B.L. 1956. Language, Thought & Reality. Cambridge, MA: MIT Press. Witzany, G. 2007 (May). “Telomeres in Evolution and Development from Biosemiotic Perspective.” Paper presented at Cold Spring Harbor Laboratory Meeting: “Telomeres & Telomerases.” Wolf, F.A. 1994. The Dreaming Universe: a mind-expanding journey into the realm where psyche and physics meet. New York: Simon & Schuster.

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CHAPTER TWO

Losing and Gaining: About Growing Old “Successfully” in the Netherlands

Margaret von Faber and Sjaak van der Geest

The concept of successful aging has caused confusion and misunderstanding between health professionals and policy makers on the one hand, and older people on the other. During anthropological research among 27 older (85plus) people in a mid-sized town in the Netherlands, we found that they rejected the idea that “successfully old” meant that one was healthy and autonomous and able to live without the help of others. Physical strength and health, they argued, could hardly be called an achievement or be considered as “success.” Successful aging, they emphasized, rather was the art of accepting the limitations and losses that accompany aging without becoming grumpy and bitter. Successful are those who keep their good spirits in the face of the numerous losses that come their way. Successful are also those who manage to keep their network alive and continue to attract friends and relatives in spite of their own restricted mobility. The secret of success therefore lies in adjustment. The people with whom we spoke illustrated their views with experiences from their own lives. In a collection of essays on loss and melancholia, Eng and Kazanjan (2003a) covered a wide range of dramatic topics, but the most common type of loss that almost everyone experiences, growing old, did not draw any of the authors’ attention. This chapter describes how people 85 and older in a provincial town in the Netherlands reassess the numerous losses they have 27

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suffered in their lives and try to turn them into gains. Succeeding in doing so, we argue, should be seen as a kind of “successful aging.” The concept of “successful aging” lends itself to more than one interpretation, and while it represents a useful distinction if carefully defined, it is not (as Stephenson points out in Chapter One) without attendant problems if it takes on class connotations or ignores overall health. Rowe and Kahn describe it as the positive extreme of normal aging (1987; 1997), while others use definitions such as “the elite of the healthy older” or “robust aging” (Garfein & Herzog, 1995). In these definitions, successful aging is seen as better than a normative state of being old and can be measured objectively. Other researchers, such as Baltes and Baltes (1990), Schulz and Heckhausen (1996), and Steverink, Lindenberg and Ormel (1998) view successful aging as a meaningful adaptation of the individual to changes during the aging process or as experiencing individual feelings of well-being (Havighurst, 1963; Keith, Fry & Ikels, 1990). In all models of successful aging, the domains of health, well-being, and social contacts are important elements. The models that focus on adaptation direct the attention at growing old in a life-span perspective and the influence of individual agency. As a consequence of all the different definitions, researchers have to choose which perspective they use as a starting point: the outsider’s perspective, for example from policy makers, or the perspective of the older people themselves (see, e.g., Collins, 2001; Torres, 2001). This chapter draws on the findings of the anthropological part of the Leiden 85-plus Study about the way in which people aged 85 and older viewed what others might call successful aging. In a sense, then, it is an ethnographic examination of how well the concept actually works when it is discussed by those at whom it is aimed. We will examine how this group of people aged 85 and older understand and define well-being in old age and demonstrate the complex relationships between declining health and social contacts. We will address questions such as these: What are the goals older people strive for in old age? What negative aspects do they try to avoid? And what coping strategies do they use to overcome loss and grow old successfully?

Older People in the Netherlands The research was conducted in Leiden, a town of 117,000 inhabitants in the densely populated western part of the Netherlands. The city of Leiden can be characterized both as a university town and as a town of working-class people. From the seventeenth century onwards, the city was well known for its university, founded in 1575, and because the famous painter Rembrandt grew up and worked here before he moved to Amsterdam.

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Until the seventeenth century, Leiden had been the centre of the textile industry, and it owed much of its wealth to this flourishing industry. In the second half of the nineteenth century, industrialization changed the character of industrial work. Factories, specializing in food, came to the fore, and the textile industry disappeared. Because of working opportunities, Leiden has always attracted various groups of refugees and workers from other European countries. Immigrants hardly appear in the research, however, as they are still a young population. Older people in the Netherlands are regarded as being relatively privileged. A welfare state, which provides basic social security including income support, care, and housing for all members of society, was established in the 1950s and 1960s. Due in part to the increasing costs of institutional care, the Dutch government has promoted “independent living as long as possible” for older people since the 1970s. This became the dominant paradigm in policies directed at the older population (Broese van Groenou & Van Tilburg, 1996; Huijsman & De Klerk, 1997). Because of the introduction of general pensions and social security in the development of the Dutch welfare state, people are independent of their children in financial and material matters. However, the quality of emotional contacts with their children becomes more important. Both older Dutch adults and their children1 prefer a certain independence from each other, which can be seen in the attitudes toward living and health-care arrangements (Dykstra & Knipscheer, 1995). When health declines and older people do become dependent, they have to call on their social contacts. However, in the Netherlands dependence is not valued positively, as it conflicts with strong ideals of autonomy and self-determination. Van der Veen (1995) writes that Dutch people contrast social relationships to more businesslike ones. In social relationships people emphasize the communication of feelings and emotions. In businesslike transactions, independence is maintained through direct reciprocity. Professional helpers are paid for their work, so there is a balance between “giving” and “taking,” and older people who receive professional help remain “independent.” Those who try to maintain “good” relationships with their children prefer material and practical daily care from professional workers and reserve their contacts with children and grandchildren for emotional support.

The Leiden 85-plus Study In the Leiden 85-plus Study on Successful Ageing, which lasted from 1997 until 2002, all citizens aged 85 in the city of Leiden were enrolled and followed

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for four years. The aim of the study was to investigate determinants of successful aging and preventable causes of unsuccessful aging. All the inhabitants of the city of Leiden, born between 1 September 1912 and 1 September 1914 (n=705), were invited for this study shortly after their 85th birthday. There was no exclusion on grounds of health, cognitive functioning or living situation. Data were obtained from 599 participants, a response rate of 87 per cent. In the biomedical quantitative part of the study, successful aging was defined as optimal states of physical, psycho-cognitive, and social functioning and optimal feelings of well-being, which was annually measured with established quantitative instruments (von Faber et al., 2001). In the anthropological approach, open-ended interviews were conducted with 27 participants in order to investigate their perceptions of successful aging, taking into account their health condition. Experiences and opinions of the people interviewed were not limited to the exact moment of the interview, but included past and present experiences and expectations about the future. The participants selected varied in physical condition, marital status, and housing situation and were roughly “representative” of the overall study group. People with serious loss of cognitive function were not included, because their impairment would prevent them from taking part in an indepth interview about the abstract notion of successful aging. Most people were visited twice or more, and a group of ten participants were visited and interviewed every three months over a period of three years. One of the participants suffered from cognitive decline during this period; she was not excluded, but structured interviews with her were replaced by conversations. Interviews lasted for at least one-and-a-half hours, and participants were also observed in their home situation. In addition, ten general practitioners were interviewed about their perceptions of successful aging. All interviews were recorded on tape and transcribed. In the analytic process, data were examined and compared for similarities and differences. Concepts such as health, successful aging, and social functioning were elaborated in terms of their properties, dimensions, and relationships. Understanding Notions of Success, Health and Well-Being in Old Age From the first cross-sectional analysis of the Leiden 85-plus Study, it appeared that there were marked discrepancies between the perception of successful aging by older people themselves and the conclusions drawn from biomedical measurement.2 According to the latter, only ten per cent of the participants in our study could be categorized as “successfully” old.3 The qualitative interviews, however, showed that 22 out of 27 participants actually considered 30

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themselves, individually or as a couple, to be successful in the ways in which they have aged. According to the participants we interviewed, successful aging simply means being content with one’s life. One man explained, I feel happy! What more is there to wish? If you are at this age and you feel happy? Successful aging is how happy can you be at this age. Of course health plays an important role, however you can also feel happy if your health is poor. I mean, if you say successfulness is the same as good health, then you could say: everyone who is 85, 86, 87, and who is not in a good shape is not successful. But there is more to it. It is not only health. It is a combination. You can’t control your health. You can only partially influence conditions when you grow old, for instance financial resources. But relations with others, keeping social contacts and feeling connected with society, those are things you can bring about yourself. In that sense you can be successful.

Although all the older people with whom we spoke mentioned and recognized the domains of physical, cognitive, and social functioning and wellbeing, these domains were not perceived as being equally important. Good social contacts were felt to be the most important prerequisite for well-being and hence successful aging. Being “important to others,” especially children, was connected with feelings of “success” and purpose in life and was a central theme. Loneliness, like cognitive decline, was feared, and a lonely person was considered as not successful. Physical and cognitive functioning was perceived as important, but primarily as a means of functioning on a desired social level. Most people feared cognitive decline because dementia was perceived as losing one’s personality and because it means losing contact with loved ones. One couple discussed together the worst-case scenarios, i.e., becoming demented or having cancer. Referring to experiences in their own family, the man argued, The fact that they [others] prayed for her death, confirms my opinion that dementia is the worst there is. [...] Cancer is also terrible (referring to his father and his mother), but they are still ... they can talk about it, they can be with it, and so on.

In general, loneliness, loss, and grief were associated with cognitive decline. Participants often stated that although physical problems occurred, their mental state was “still all right,” as if they wanted to distance themselves from peers with cognitive decline. With regard to health, participants emphasized the importance of adapting to health problems and the preservation of social contacts. 31

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From the perspective of the people with whom we spoke, successful aging is an adaptive process that is both person- and context-bound. Character and attitude (“making the most of it”) were mentioned as the main instruments in dealing with limitations. So, rather than optimal scores on clinical scales of functioning, “success” is linked by this group of people over 85 years old to ways of coping and dealing with problems. From their perspective “success” refers to something that people can try to achieve, rather than something that just happens to a person (like having or lacking good health). The approach of successful aging shows that people strive to maintain a feeling of well-being and self-esteem and preserving social contacts (von Faber, 2002). Examining the data from the perspective of adaptation sheds light on the challenges and difficulties they face in attaining this. Loss and Its Acceptance In their introduction on loss and nostalgia, Eng and Kazanjan (2003b: 2) write, We might say that as soon as the question “What is lost?” is posed, it invariably slips into the question “What remains?” That is, loss is inseparable from what remains, for what is lost is known only by what remains of it, by how these remains are produced, read, and sustained.

The older people we interviewed were well aware of what they had lost over the years –– partners, friends, children, health, mobility, social reputation, public attention, sexual pleasure –– but they tried to concentrate on what remained. They told us they were counting their blessings. Their adjustment to old age and its losses had two dimensions: it was a strategy of not complaining, of “impression management” to keep the affection of their children and friends, but it was also an act of personal preservation, accepting the facts of life and retaining an overall sense of meaningfulness with regard to the life they had lived. These were people who expected health problems to occur at the age of 85 as part of “normal aging.” The general expectation was that “old age comes with infirmities.” When participants did not have serious health problems they regarded themselves as “lucky,” “blessed,” and “privileged,” but they knew that this situation might change any time. In the interviews, a notion of vulnerability often emerged, which referred to the expectation that physical health problems might occur suddenly at this age: Sometimes I feel 85, when I am ill and not feeling very well because of my heart. But at this moment I feel all right. It is not over, but I don’t have any pain. But at this age, things may happen. 32

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Although one’s own death, despite one’s age, remains an abstraction, participants anticipate illness and deterioration that will ultimately cause their death: I still manage. But of course, I am privileged. It is normal that things get worse at my age. One cannot die healthy.

The expectation that physical decline is inevitable is linked to already experienced biological changes, like the slowing down of pace and strength, or chronic disease.4 Threats There is a link between the vulnerable body and perceptions of the future. With regard to health in old age, the interviews contain statements about decline, known and unknown risks, and health problems that medical interventions cannot solve. Managing risks plays an important role. The anticipation of decline of the older people in this study can be divided into anticipating an unknown future and anticipating the “worst possible scenario” in case of a declining condition or progressive illness. Not only existing health problems, but also the anticipation of such problems, leads to specific decisions such as moving to another house, even when there is no present indication that things will happen. In the light of a future that one hopes for or fears, specific actions are undertaken or considered: We are not registered in any home for the elderly. He [my husband] does not want to go. Yes, I would like to stay in my own house, too, but what if things get worse? Then they can put you anywhere!

Considerations about the future often include death and dying. Many participants had thought about what they can accept as part of “normal aging,” and several had decided to make a declaration in which they state under which circumstances they do not wish their lives to be prolonged by medical interventions, for example, in the case of severe cognitive decline. One woman referred specifically to the irreversible consequences: “I think it is terrible, my ability to communicate may get lost forever.” Notions of suffering and dignity, religion, societal developments, and statements by members of the direct social network, especially children and partners, influence this decision making and outlook. The most important negative outcome of health decline described by people in the interviews was a feeling of dependence. The study participants feared becoming “a burden” on others (cf. Antonucci, 1990; Minichiello, Browne & Kendig, 2000; Vatuk, 1990). Becoming “a burden” may lead to loss 33

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of social contacts, loneliness, and a loss of a feeling of well-being. For these reasons, participants stated that they were engaged in several strategies directed at managing health problems, maintaining a feeling of well-being, and preserving social relationships. Strategies Directed at Managing Health in Old Age Both cognitive and practical strategies appear in managing changes in health. As a consequence of their age, the participants redefined the concept of health. Many talked about their limitations as “shortcomings,” “weak spots” or “normal changes” due to old age. From their perspective, health during old age means the maintenance of basic functions and the absence of severe pain and life-threatening diseases such as infections or cancer. With regard to basic sensory abilities such as hearing, vision, or balance and mobility, it is accepted that these might decrease to a certain extent. Participants with chronic diseases such as emphysema, rheumatism, arthritis or high blood pressure stated that they felt healthy, although they were aware that their view contradicted biomedical perspectives on health. As one woman put it, “Of course I am very healthy. It is only my knees, they are worn-out.” A slow change in physical functioning enables people to gradually alter their practices and standards. This gradual adjustment was important for how participants perceived their functioning. For example, within the Leiden 85plus Study, an intervention study was conducted on hearing loss (Gussekloo et al., 2003). In this part of the study, it was discovered that there was a marked discrepancy between the etic (externally defined) and the emic (internally experienced) perceptions of hearing loss. Three out of four participants with objectively measured severe hearing loss declined participation in the auditory rehabilitation program, stating that a hearing aid was not yet necessary. Among other reasons, they were conscious of their limited hearing but talked about several solutions for coping with hearing loss in daily life. Although “disability” was diagnosed from a medical perspective, it was not experienced as such by most of the elderly themselves. Another cognitive strategy is a selective comparison (Suls & Mullen, 1982) with peers who have more or worse health problems. As one participant said, I have reached a beautiful age. I feel healthy; I have never been to a hospital. I am even involved in voluntary work. When I see people of my age there, I think: well, I am fortunate compared to them.

The question “How am I doing for my age?” is important in self-assessment (Neugarten, 1979). In the comparison with peers, participants referred to the 34

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general expectations of bodily decline with age. This selective comparison adds to a relative feeling of well-being. This contrasts markedly with the hypothesis by Suls and Mullen that in comparison to other age groups, older people make fewer comparisons with peers but more comparisons with the past. Instead, we found that all Dutch participants compared themselves with peers, despite the shrinkage of their social network. General images of older people, documentaries on television about nursing homes, and observations of peers in shops and on the street all influenced the ideas and opinions that participants had about other older individuals. The comparison even included deceased peers: I can still walk and hear normally. How many people that were born in the same year are able to do that? How many of them are still alive, and how many of them feel happy like me?

In addition, health problems demand practical strategies. Almost invisibly to the outside world, participants are involved in different kinds of “work” (Corbin & Strauss, 1988), including avoidance of risks, maintenance of functioning, and actions directed at dealing with declining abilities. Actions based on risk assessment are ways of avoiding risk by ceasing certain activities, or reducing it by changing the character of activities, for example, staying away from busy crossroads or not going out alone in the evening. Despite difficulties, participants wanted to keep their health status as optimal as possible. They engaged in specific activities such as physical gymnastics, voluntary work or shopping as part of a deliberate strategy to maintain daily functioning. With regard to cognitive functioning, participants perceived playing cards or chess and doing crossword puzzles as “mental exercise.” Dealing with decline is therefore directed at acceptance. However, this involves handling contradictory emotions such as hope, fear, and uncertainty about bodily changes or further decline. The search for solutions, such as purchasing aids, making practical changes in daily living, and seeking alternatives, new possibilities, and new standards, all hold a prominent place in the adjustment processes related to the physical and/or mental condition. Control involves striving for self-control or leaving the control to others, for example, children or general practitioners. In cases where participants are confronted with opinions that conflict with their own ideas and opinions, deliberate self-control is both control and an act of resistance to what are perceived as wrong interpretations of themselves or their situation. Practices concerning control ask for specific actions such as consulting different physicians and asking for a second opinion about health problems. If control is handed 35

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over, it involves signing several papers in which it is stated that someone else represents the participant. All these strategies are directed at continuity of a sense of self and the maintenance of self-esteem. Clearly, adaptation is a multi-dimensional process of perceptions and practices directed at different goals. The term is used frequently with regard to illness or other problems in life. However, in daily practice several actions from different categories occur simultaneously and are sometimes contradictory. Corbin and Strauss (1988: 256) point to potential conflict where bodily deterioration is concerned: “the paradoxical requirement that the ill must come to terms with disabling limitations while at the same time fighting them.” The case study below illustrates this. Case Study 1: Frans5 Frans lives in a home for the elderly and has had poor vision throughout his life. In 1995 an operation was performed on a cataract, and in 1996 he underwent a corneal transplant. It did not help much. In 1997 he was hardly able to see with his left eye and saw very little with his right eye. Within the next year his vision diminished further. He was referred to a specialist in vision aids: The man was figuring out which kind of magnifying glass was appropriate for me. He found something eventually. They like to sell something too; at least that is how I see it. However, if they could not find anything, well then they would not have sold it either. Now I get a stronger magnifying glass. I thought to myself: It won’t work; I have no confidence in it. However, if the doctor sends you.... The former magnifying glass was four years ago. Maybe they have developed something new, something better.

It was common for participants to experience simultaneously the emotions of hope and fear of disappointment with regard to new aids and therapies. In time, Frans said, his vision decreased further, so every time he had to adjust to new limitations. In 1999 his general practitioner contacted him and told him, “I regret saying this, but there is nothing we can do anymore. Your eyes will get worse. Slowly your vision will diminish.” The diagnosis meant a lot of uncertainty for Frans. He did not know to what extent his eyesight would diminish and over what time period. He had to accept the idea that things would get worse but did not know how to prepare himself for the unknown. Moreover, as we saw earlier, it is not only health that matters. Social contacts also appear to be important components of well-being in old age (cf. Farquhar, 1995). For this reason, the study participants also engaged in other strategies; it is to these that we now turn. 36

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Declining Health and the Preservation of Social Contacts Older people without children are often perceived as the most vulnerable group in society because they lack direct family support. In general it is assumed that social relationships influence health positively, so social support is seen as acting as a “buffer” and increasing feelings of well-being when older persons experience problems such as declining health or the loss of a partner (see, e.g., Rowe & Kahn, 1987; 1997). Other researchers have criticised this “buffer” hypothesis by pointing to stressful relationships, unmet expectations, loss of autonomy, and psychological “costs” as important factors (e.g., Antonucci, 1990; Bengtson, 2001; Lefrançois et al., 2000). Bengtson (2001) distinguishes between different intergenerational relationships. He argues that conflict is an important aspect of parent–child relationships that deserves more attention in research. Within intergenerational relationships, feelings both of distance and proximity, and of attachment and detachment, are found, and both are important. In the Leiden 85-plus Study, the majority (84 per cent of all participants) had one or more children alive (Gussekloo, De Craen & Westendorp, 2000). Of the 27 participants in the qualitative part of the study, six had no children. However, other relatives, such as nephews and nieces, and neighbours or friends undertook support roles and became important for participants without children. Only one couple with children had severed all contact with their children due to conflict in the past. Two participants had contact with their children only on special occasions. The rest reported regular contact (weekly or monthly) with their children and described their relationship with them as “good.” Contact with grandchildren varied from regular and intimate to an annual visit. Social Strategies Almost all relationships between our study participants and their adult children involved a mix of detachment and attachment. Just as children do not tell their parents everything, older people do not share all of their thoughts and “secrets” with their adult children. Participants emphasized that their children had grown up and now “lead their own lives.” The autonomy of their children was perceived as important, and participants were careful not to interfere in business that they perceived to be a personal matter for their children. Even in relationships described as “good,” involving regular contact and exchange of support and affection, participants weighed up which thoughts and feelings to share with their children and which to keep to themselves. Especially when there was a conflict between children, parents kept silent to prevent becoming a part of the conflict. It was one of their social strategies, 37

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since conflict with children was seen as something that the older person has to prevent. One woman remarked, If older persons say that they have severed all contact with their children, I always think this is their own fault. I too have to mind what I say. When my children are here to visit me, I leave the living-room and go to the kitchen when I get angry with them.

According to the participants in this study, health problems in particular call for adjustment in social relationships. Even participants who were in good health emphasized this point. However, complexity and ambiguity came to the fore in the conversations about their social relationships in the context of declining health. Good social relationships do not necessarily mean that older people talk about the things that bother them. That this may turn out to be very difficult is illustrated by the following case study. Case Study 2: Bea Since her husband died five years ago, life has lost its appeal to Bea. She had been married for 60 years and has two children. Bea and her husband ran a shop in a village near Leiden. However, when her husband fell sick with emphysema they moved to Leiden to be closer to their daughter. After a year Bea’s husband died and Bea now lives alone in an apartment in a new housing estate where she has hardly any contact with neighbours. Bea’s daughter visits her almost every day, and a grandson visits her weekly. Although Bea loves these visits, she does not want to be “a burden.” She suggests to her daughter to visit her less frequently and she asks for as little help as she can. Despite feeling lonely after the death of her husband, Bea does not confide her feelings to her daughter. She is also afraid that health problems that might occur in the future will make her life a misery. She has signed a declaration stating under what circumstances she does not wish her life to be prolonged by medical interventions. Within the Dutch media there is much debate about “quality of life” and whether older people who suffer have the right to decide to end their life if they consider it no longer worthwhile. Bea is an advocate of self-determination when it comes to the end of a person’s life. She feels that her life is useless and that it will become even worse if severe health problems occur. When Bea was 87, she suffered for months from severe stomach pain, an oesophageal infection, and a blockage of her bowel. She felt sick but did not tell her children: “They did not even know how sick I was. I never told them. I thought, if I tell them, they will think, ‘She is nagging. All people at that age have their complaints.’ When they came to visit me, I tried to be as good as 38

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possible. After they went home, I went straight to bed. If they phoned and asked me how I was doing, I turned the conversation to another subject.” Only after she had been admitted to hospital in critical condition did the children find out about their mother’s illness. Bea is afraid of the future. She fears decline to the extent of total dependence: “It will get worse, not better.” In her opinion, there is nothing meaningful she can still do for others. In line with this, her wish for ensuring control, at least about the end of her life, is influenced by her fear about discontinuity and becoming “a burden.” Although she states that adaptation is important, she also admits that she has difficulty accepting her own situation. Like many other respondents she presumes that it is better to maintain a cheerful appearance in order to preserve social contacts. Bea even engages in active “impression management” by hiding her complaints from her children. On Becoming a “Burden” Exposure to the threats of declining health and a shrinking social network makes people engage in strategies for not becoming a burden. But what does it mean “to burden” social relationships? Sometimes older people perceive practical support as “over-burdening” a person who is already busy providing support. In other cases, it means that the problems are perceived as too serious to ask for help. Factors that also influence the notion of being a burden are the division of roles between parent and child in the past, the perceived supporting ability of the person, and the condition of the care provider involved. The children may themselves be in their 60s and involved in taking care of their own children and grandchildren, or sometimes suffer from serious medical problems themselves. For example, one woman was afraid of a sudden death because of heart failure. She wanted to arrange for an alarm system but did not want to “bother” her daughter with this because her daughter was recovering from radiation treatment for cancer. These kinds of considerations highlight the close interconnection of the threats faced by different members of social networks. Because older people have the problems of their adult children to consider, their own physical and psychological vulnerability can be exacerbated. Out of fear of putting the relationship to a test, older people seldom talk with their children about their perceived feelings of “being a burden.” For example, when Bea was asked whether her daughter shared her idea about being a burden, she answered, “No, it is difficult to talk about it. I think it is a burden to her, but I am afraid to talk about it because then I think, ‘Maybe, she will stop coming everyday,’ and that would be terrible.” Whether this fear is realistic or not remains obscure. According to older people, health problems at this age have to be accepted, 39

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and non-complaining is one social strategy for dealing with such problems. One woman who suffers from pain due to arthritis explained, “I won’t complain about my ailments to my children, I’m afraid that otherwise they won’t come to visit me anymore.” In general, complaining is perceived as negative, and several participants spoke proudly of the fact that “no-one shall hear me complaining,” although they also mentioned their difficulties in accepting pain, losses or disability. This does not mean that older people do not complain; however, they are cautious in talking about their problems. Peers are very direct with negative remarks if they think someone is complaining. Finally, participants tried to preserve social ties by rewarding social support with material, financial or other incentives; this is a way of counteracting dependence. Rather than admitting feelings of disappointment, they tried to explain away unmet expectations of reciprocity and emphasize the busy lives of their children. It is a cognitive strategy to mask feelings of disappointment and it prevents them from asking themselves (often painful) questions about the willingness of children and grandchildren to provide support. Few older people dare to admit to others that they wish to be dependent to a certain extent. Most of the participants we interviewed wished for reciprocity and hoped that the social contacts with friends, children, and relatives would continue in old age. As one woman put it, Your social contacts are important. You have to invest in them from an early age and then you hope that you get something in return when you’re old.

Conclusion This ethnographic research among those over 85 in the Netherlands shows aspects of accommodation to loss in old age and suggests we should reconfigure how we use the term “success,” for it does not appear to mean the same thing to those who describe it from the outside as it does to those who experience it directly. Those who are able to cope with declining health and to preserve their social contacts feel content and hence consider themselves to be successful in doing so. At the same time they are aware of what they have lost and are bound to lose in the near future; they may face stressful declines in health to the point of possible dependency, loneliness, and loss of social esteem. Consequently, older people put considerable effort into dealing with declining health, especially with the help of both cognitive and practical strategies. Cognitive strategies, such as selective comparison and explaining away disappointment, are directed at maintaining a feeling of self-esteem and emotional well-being. The use of strategies may be regarded as a kind of emo-

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tional intelligence and not merely as a cognitive task. The social consequences of certain kinds of loss, like dependence and loneliness, hold a prominent place in the narratives of older people precisely because they are augurs of a declining ability to adapt. Although it is obvious that lack of social contact may result in loneliness and loss of well-being, older people can also feel lonely despite social contacts because they don’t have people they can really confide in. Both the statements of older people and their actions reveal the ambiguity of old age. On the one hand, those who do not complain act according to cultural norms and preserve a feeling of dignity, which their social environment positively rewards. On the other hand, it may be very difficult to share feelings of fear, loss or bereavement. Although participants perceived dependence and decline as a normal part of aging, they found it almost impossible to talk about it. Talking about negative things could easily be perceived as complaining or whining, which could also result in a potential loss of social contact. We have described older people’s attempts to turn their losses into gains. For them, successful aging is the art of accepting the limitations and losses that accompany old age without growing bitter. Those who can keep their good spirits in the face of the numerous losses that come their way, and who manage to keep their network alive and continue to attract friends and relatives in spite of their own restricted mobility, regard themselves as successful. The secret of success lies in adjustment –– no matter what kind of external definition of success might be imposed by others. For one category of older people, however, those with grave cognitive decline, the possibility of transforming loss into gain was felt to be beyond their grasp. In the anthropological research arm of the study, people in cognitive decline were excluded, but a glimpse into the subtle realities of this part of aging, as opposed to the deep fears attached to it by many, can be acquired from reading the chapters by Pia Kontos (Chapter Seven) and Janice Graham (Chapter Eight). If conversations and meetings with older people lose their direct gratification and become unsatisfactory or boring due to the cognitive limitations of the other older person, the latter risks becoming lonely, without “deserving” it (i.e., in spite of his or her social investments in the past). In such a situation life can seem to end unfairly, as “total loss” (van der Geest & von Faber, 2002). It is ironic that older people in the Netherlands who want to prevent this happening to them by requesting a “good death” (euthanasia) before they are “demented” are not able to acquire that favour. The law stipulates that a request for euthanasia should be voluntary and well considered, and from a patient who is competent enough to express his or her will. Older

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people suffering from dementia are said not to meet that criterion, even if they expressed their wish very clearly before they were affected by the disease (cf. Niekamp & van der Geest, 2003). We do not romanticize growing old in this chapter as an almost automatic process of gaining by losing, for people do not become wise and attractive to others merely by adding years. Growing old without being destroyed by the losses one may have to endure is an achievement that many people may fail to realize. But those who do understand the importance of this aspect of aging turn out to be winners in spite of their losses, by contesting the assumptions of what successfully aging actually means to them.

Acknowledgements The Leiden 85-plus Study on Successful Ageing was funded by the Dutch Ministry of Health, Welfare and Sports and was carried out with the help of several colleagues, in particular Rudie Westendorp, Jacobijn Gussekloo, Annetje Bootsma-van der Wiel, Eric van Exel, and Inge Mooiekind. We would also like to thank Emily Grundy, Ruly Marianti, and Elisabeth SchröderButterfill for their useful comments and suggestions on earlier drafts.

Notes 1. Older people without children are reported to have more social relationships with other family members such as brothers, sisters, nieces, and nephews than older people with children (Dykstra & Knipscheer 1995). 2. Physical functioning was measured using the Groningen Activity Restriction Scale (GARS). Social functioning was measured with the Time Spending Pattern Questionnaire. Psycho-cognitive functioning was measured with the Mini-Mental State Examination (MMSE) and the short Geriatric Depression Scale as a screening instrument for depression. Well-being was assessed by Cantrill’s Ladder, a visual analogue scale on perceived quality of life varying from 1 to 10 points and by a general question: “Are you, in general, satisfied with your present life?” Loneliness was screened by a questionnaire developed by De Jong-Gierveld & Kamphuis. The biomedical instruments, the classification, alternative criteria, and the discussion about outcomes of biomedical and anthropological findings are described in detail elsewhere (von Faber et al., 2001). 3. In the quantitative part of the study, participants were classified as successful if they had minor physical disabilities, regular social activities, absence of cognitive impairment, and absence of marked depressive feelings. Besides this they had to

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have a high mark on quality of life, satisfaction with present life, and the absence of marked feelings of loneliness. 4. At the age of 85 years, more than half of the participants of the study (n=599) suffered from one or more chronic diseases that had started before the age of 85. 5. The participants in the research wished to be called by a first name. Most of them chose their own pseudonym.

References Antonucci, T.C. 1990. “Social Supports and Social Relationships.” Pp. 205–26 in R.H. Binstock and L.K. George (Eds.), Aging and the Social Sciences. London: Academic Press. Baltes, P.B., and Baltes, M.M. 1990. “Psychological Perspectives on Successful Aging: the model of selective optimization with compensation.” Pp. 1–34 in P.B. Baltes and M.M. Baltes (Eds.), Successful Aging: perspectives from the behavioral sciences. Cambridge: Cambridge University Press. Bengtson, V.L. 2001. “Beyond the Nuclear Family: the increasing importance of multigenerational bonds.” Journal of Marriage and Family 63 (2): 1–16. Broese van Groenou, M., and Van Tilburg, T. 1996. “The Personal Network of Dutch Older Adults: a source of social contact and instrumental support.” Pp. 163–82 in H. Litwin (Ed.), The Social Networks of Older People: a cross-national analysis. Westport, CT: Praeger. Collins, P. 2001 “‘If You Got Everything, It’s Good Enough’: perspectives on successful aging in a Canadian Inuit community.” Journal of Cross-Cultural Gerontology 16: 127–55. Corbin, J.M., and Strauss, A. 1988. Unending Work and Care: managing chronic illness at home. San Francisco: Jossey-Bass. De Jong-Gierveld, J., and Kamphuis, F.H. 1985. “The Development of a Rasch-type Loneliness Scale.” Applied Psychological Measurement 9: 289–99. Delor, F., and Hubert, M. 2000. “Revisiting the Concept of Vulnerability.” Social Science and Medicine 50: 1557–70. Dykstra, P.A., and Knipscheer, C.P.M. 1995. “The Availability and Intergenerational Structure of Family Relationships.” Pp. 37–58 in C.P.M. Knipscheer, J. de JongGierveld, T.G. Van Tilburg, and P.A. Dykstra (Eds.), Living Arrangements and Social Networks of Older Adults. Amsterdam: VU University Press. Eng, D.L., and Kazanjian, D. (Eds.). 2003a. Loss: the politics of mourning. Berkeley: University of California Press. Eng, D.L., and Kazanjian, D. 2003b. Introduction: mourning remains. Pp. 1–25 in D.L. Eng and D. Kazanjian (Eds.), Loss: the politics of mourning. Berkeley: University of California Press. 43

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Farquhar, M. 1995. “Older People’s Definitions of Quality of Life.” Social Science and Medicine 41 (10): 1439–46. Garfein, A.J., and Herzog, A.R. 1995. “Robust Aging among the Young-old, Old-old, and Oldest-old.” Journal of Gerontology: Social Sciences 50: S77–87. Gussekloo, J., De Bont, L.E.A., von Faber, M., Eekhof, J.A.H., De Laat, J.A.P.M., Hulshof, J.H., Van Dongen, E., and Westendorp, R.G.J. 2003. “Auditory Rehabilitation of Older People from the General Population –– the Leiden 85-plus Study.” British Journal of General Practice 53: 536–40. Gussekloo, J., De Craen, A., and Westendorp, R.G.J. 2000. “Gezondheid en functioneren van de oudste ouderen in Nederland. De Leiden 85-plus Studie.” Medisch Contact 55 (13): 473–76. Havighurst, R.J. 1963. “Successful Aging.” Pp. 299–320 in R.H. Williams, C. Tibbits, and W. Donahue (Eds.), Processes of Aging. New York: Atherton Press. Huijsman, R., and De Klerk, M. 1997. “Succesvolle zorgverlening aan ouderen in Nederland.” Tijdschrift Sociale Gezondheidszorg 75: 406–16. Keith, J., Fry, C.L., and Ikels, C. 1990. “Community as Context for Successful Aging.” Pp. 245–61 in J. Sokolovsky (Ed.), The Cultural Context of Aging: worldwide perspectives. New York: Bergin and Garvey. Lefrançois, R., Leclerc, G., Hamel, S., and Gaulin, P. 2000. “Stressful Life Events and Psychological Distress of the Very Old: does social support have a moderating effect?” Archives of Gerontology and Geriatrics 31 (3): 243–55. Minichiello, V., Browne, J., and Kendig, H. 2000. “Perceptions and Consequences of Ageism: views of older people.” Ageing and Society 20: 253–78. Neugarten, B.L. 1979. “Time, Age and the Life Cycle.” American Journal of Psychiatry 136: 887–93. Niekamp, A-M., and van der Geest, S. 2003. “Ageism and Euthanasia in the Netherlands: questions and conjectures.” Mortality 8 (3): 296–304. Rowe, J.W., and Kahn, R.L. 1987. “Human Aging: usual and successful.” Science 237: 143–49. Rowe, J.W., and Kahn, R.L. 1997. “Successful Aging.” The Gerontologist 37 (4): 433–40. Sahlins, M.D. 1974. Stone Age Economics. London: Tavistock Publications. Schulz, R., and Heckhausen, J. 1996. “A Life Span Model of Successful Aging.” American Psychologist 51 (7): 702–14. Steverink, N., Lindenberg, S., and Ormel, J. 1998. “Towards Understanding Successful Ageing: patterned change in resources and goals.” Ageing and Society 18 (4): 441–67. Strauss, A., and Corbin, J. 1998. Basics of Qualitative Research: techniques and procedures for developing grounded theory. London: Sage. Suls, J., and Mullen, B. 1982. “From the Cradle to the Grave: comparison and self-

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evaluation across the life-span.” Pp. 97–128 in J. Suls (Ed.), Psychological Perspectives on the Self. New York: Erlbaum. Torres, S. 2001. “Understandings of Successful Ageing in the Context of Migration: the case of Iranian immigrants in Sweden.” Ageing and Society 21: 333–55. van der Geest, S., and von Faber, M. 2002. “Een slordig einde? Reciprociteit en ‘succesvol oud’ nader beschouwd.” Sociologische Gids 49 (4): 409–20. van der Veen, K.W. 1995. “Zelfbeschikking in afhankelijkheid? De ambiguïteit van ouderenzorg in Nederland.” Pp. 57–65 in S. van der Geest (Ed.), Ambivalentie/ Ambiguïteit. Antropologische notities. Amsterdam: Het Spinhuis. Vatuk, S. 1990. “To be a Burden on Others.” Pp. 64–88 in O.M. Lynch (Ed.), Divine Passions: the social construction of emotion in India. Berkeley: University of California Press. von Faber, M. 2002. Maten van Succes bij Ouderen: Gezondheid, aanpassing en sociaal welbevinden. PhD Thesis. University of Amsterdam. Rotterdam: Optima. von Faber, M., Bootsma-van der Wiel, A., Van Exel, E., Gussekloo, J., Lagaay, A., Van Dongen, E., Knook, D.L., van der Geest, S., and Westendorp, R.G.J. 2001. “Successful Aging in the Oldest Old: who can be characterized as successfully aged?” Archives of Internal Medicine 161: 2694–700.

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CHAPTER THREE

Empowering Knowledge and Practices of Namaqualand Elders

Robin Oakley

“I wore the pants in my house all these years of my life.” Lydia Cloete, a former domestic servant now aged 86, often said this, much to the delight of her friends and family as she recounted her life experiences.1 In an itinerant African community where women seldom wear pants, Lydia’s stories, both in the content and in the act of telling, alluded to new values attributed to ways that people experienced aging and the life course. Her father was a semi-subsistent peasant, whose wife’s status was high by virtue of her control over the milk and milk products in the household. As the youngest born, Lydia was informally deemed the caregiver of her parents. By the age of 60, Lydia had already worked for wages throughout western South Africa and northern Namibia and had managed to remit enough wages and/or taken time away from wage work when needed on the farm, to ensure a high quality of life for her mother, who passed away in her 90s. Her life bears the imprint of a changing South African political economy: she was drawn into the cash economy in her teens, and in her “retirement”2 at age 70 she enjoyed the regular “pay”3 of an old-age pension. She, and others in her cohort, lived through a remarkable era that was one thing when it began and quite another when it ended, but present through the entire period was the economic base of communal land tenure and local rights of citizenship to have access to land. They lived through three distinct political regimes that marked the transition from a 47

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liberal economy to a neo-liberal economy. Cross-cutting this economic shift were the political eras of the British segregationist government, the Afrikaans apartheid era, and the era of neo-liberal “rainbow” nationhood.4 Industrial capitalism girded each of these historical periods, churning wealth out of South Africa’s vast mineral deposits. The determined and weathered faces of those born at the beginning of the twentieth century bear the scars of these machinations: they grew up within an ethos of communal land tenure and were considered citizens with the fundamental right of land and the right to work it. Simultaneously, they saw the demise of their parents’ farms and were themselves the first generation to work for wages far from home, in the mineral mines or the bustling towns. The relaxing of the old agriculturally grounded patriarchal order allowed for juniors and women to experience new locally valued roles and a relative freedom from the expectations of the family that had formerly been the main productive unit. At an early age they migrated for work in the mining or service sector of regional mines or, as in the case of women, worked as domestic servants for white families. They felt the hope after the fall of apartheid and the disappointment of a nation poised for real social change converted into a nation of activists seeking biomedical antiretroviral medical solutions to ageold symptoms of poverty such as tuberculosis, which have now been transformed into HIV/AIDS diagnoses.5 Last but not least, they struggled against the ravages of the regional economic system through devising local, non–familybased forms of social reproduction. This chapter highlights some of these expressions of resistance to the individuating forces of capitalist production in the region and how people managed to reproduce a local humanism by protecting the economic context that can sustain local caregiving –– in this specific case, being flexible toward the changing roles and care of the elderly under the “new” conditions that arose in the twentieth century. The framing of aging as a series of losses, as failed body projects and other forms of disengagement characterized as part and parcel of industrial capitalist contexts (cf. Schilling, 2004; Tsuji, 1997: 350) do not seem to hold true in Steinkopf, one of seven former “Rural Coloured Areas” in Namaqualand, a semi-desert region in north-western South Africa. Remnants of the gerontocratic agrarian order, the traditionally high status of Nama women, and other relevant forms of prestige –– including the preservation of communal land tenure, elders’ knowledge of traditional tenure, and medicinal and healing knowledge –– will be examined. Namaqualand elders, rather than adapting to changing circumstances with novel behaviour, have instead successfully relied on venerable traditions to retain some important power and preserve dignity –– essentially, to exercise agency in their lives. 48

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Original ethnographic data were collected by myself between 1994–96 and 2003, and is supplemented by ethnographic data collected by Peter Carstens between 1950 and 1966, as well as archival and historical materials.

Knowledge I: The Historical Basis of Communal Land Tenure into the Neo-Liberal Era The chief aspect that ensured flexibility toward the valuation of the changing role of the elderly was that since the 1840s, Steinkopf was organized around the concept of communal land tenure and local citizenship, which guaranteed every citizen access to land and livelihood (inalienable grazing rights). This meant that everyone had a home of some sort, and while there were varying degrees of affluence, local sharing networks ensured that everyone’s basic needs were met. In short, the dual effect of communalism and citizenship allowed for the continuation of a positive local experience of aging. Steinkopf, located in the Northern Cape Province, occupies land that up until the mid- to late 1700s was occupied by the Nama. A pastoral group, the Nama are a Khoisan people, speaking a click language, who are linguistically and culturally related to the San hunter-gatherer people. The Khoisan peoples bore the early brunt of colonial intrusion, particularly after the earliest capitalist multinational company, the Dutch East India Company, set up a refreshment station. The Nama lands were usurped in the mid- to late 1700s by a group of people calling themselves Basters. The Basters had guns, spoke Cape Dutch, and were in a feisty mood after their experiences with Cape Dutch Eurocentrism and racism. By the mid-1800s, the Basters and the Nama had formed alliances with local Rhenish missionaries and together developed constitutions that protected a sense of local citizenship along with communal land use and tenure. In Steinkopf, the Baster-Missionary council developed a constitution in 1870 referred to as the “Short rules laid down for the Rhenish Mission Institution of Steinkopf, Namaqualand.” The two most important features of this constitution were the strong institution and protection of communal land-use rights and other forms of local entitlement accorded to the citizens (burgers) of Steinkopf (cf. Carstens, 1983: 147–50). There were several laws built into the constitution to protect these constitutional features. For example, in 1870 a law was passed, curbing the growth of livestock holdings of outsiders in Steinkopf, in which it was stated that “poor Burghers of Steinkopf justified to take not exceeding Sixteen Horned Cattle and Two Hundred Vee, Sheep and Goats from strange people as stated above and keep this stock on the territory of Steinkopf for to work with and live of it” (Carstens, 1983: 148). Likewise, the 1870 constitution written in conjunction with Rhenish minister Ferdinand Brecher was a manifesto opposed to individual tenure (Carstens, 1983: 150). 49

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The mineral wealth6 of Namaqualand prompted locals, under advisement from Brecher, to request protection in the form of a “ticket of occupation”7 from the British colonial government in 1847. But delays meant that Steinkopf was granted a ticket only in 1905. Boundaries were solidified in 1912 under the provisions of the Mission Stations and Communal Reserves Act 1909 [through proclamation No. 53 of 1912] (Surplus People’s Project, 1995: 52). In reference to the inevitable land losses resulting from this delay, Carstens pointed out in 1966 that “even today, the older inhabitants of Steinkopf look at their shrunken boundaries as a reminder of a period in their history when they should have questioned the White man’s word” (1966: 25). Subsequent mineral development, first copper and then diamonds, and the introduction of a head tax in 1909 created further impetus for people in Steinkopf to engage in wage labour and decreased the already waning agricultural viability of the reserve.8 The nineteenth-century community operated autonomously from the colonial government and “exercised its powers in accordance with the local customs, [and] new laws and regulations unacceptable to the majority of burghers do not appear to have been made” (Carstens, 1966: 137). Up until the mid-twentieth century, Steinkopf was a semi-subsistent peasant economy that produced enough surpluses for reinvestment. Soon after the discovery of diamonds along the north-west coast of Southern Africa in the 1920s, a local mining economy was strengthened. By the 1950s, each household in Steinkopf had to send at least one family member away for some form of migrant wage work, and the local economy became dependent upon remittances. Since many in the community continue to hold a stake in farming in order to supplement their wages and remittances, the gerontocratic ideal characteristic of agrarian production is still manifest in local households. The long-term impacts of the written constitutions were that they strengthened the local notion of citizenship and entitlement in Steinkopf. Although the constitutions and republics did not last long, the sentiments behind them have been preserved in the ideals and practices in Steinkopf into the twenty-first century (cf. Carstens, 1984: 27). Elders in Steinkopf grew up in this ethos, where shelter and livelihood were viewed as a basic right, and their historical knowledge and memory of these values continue to be a source of their value and high status. In addition to the obvious economic aspects (i.e., the experience of working outside the reserve in the regional mining industry) was the impact on local gender norms. Unlike the Bantu societies in the Nama and Baster communities, the women did not do agricultural work, instead remaining in the domestic sphere. Therefore it was quite a new thing for the young women who ventured to Kleinzee (the De Beers diamond mines), or Port Nolloth (the crayfish industry and alluvial diamond industry) to work in the households 50

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of white families (women) or in the mines (men). Many employers were from Britain, Scotland or Germany. Living in these places, then as now, was a new opportunity to get away from the scrutiny of family on the reserve and enjoy the rather metropolitan life there. Wages were important in the household economy, and these workers diligently sent remittances to their parents through the postal service. Many were also able to make additional cash informally in activities such as sewing and baking for others. Stories about wage work in these mining towns portrayed them as exciting and cosmopolitan places with people from all over the world. Kleinzee, for example, with its enormous diamond wealth, was not a mere place of employment, but a place where new relationships were created between workers from other coloured reserves, foreigners and others who worked, lived, celebrated and experienced together the creation of new and enormously powerful socio-economic space, and indeed a new set of qualitatively different social relationships. People who are now elderly and who worked away are viewed as skilled negotiators whose often harrowing tales of employment experiences are fodder for hours of enjoyable and educational stories for the young. Younger workers often consult these older, now retired migrant workers for advice on how to handle difficult social and political situations on the job. In short, the elders’ knowledge, within the regional industrial capitalist context, is still considered a source of value and worth by younger generations in Steinkopf. Key to this discussion is that the people who migrated away from Steinkopf always had a place to return home to and their citizenship rights did not lapse (cf. Weilbel-Orlando, 1998). Unlike the Bantu societies, migrant workers in Steinkopf had the luxury of returning home on weekends or at least at the end of the month to see their loved ones. Many workers also had farms, and/or livestock mixed in with the herd of other family members, and there was always work and accounting to be done to maintain the farm. These workers also had Dutch East India Company pensions, or at the very least a state pension. South Africa is often characterized as rather unique among African countries for its pension provision, but this should not be that surprising given its advanced state of industrialization. For seniors, and especially for those women who may never have had a regular income, the pension was a source of power and status, as it produced a very decent living wage for most. All seniors refer to the pensions as their “pay,” stating that it was the state’s way of compensating them for all their years of work. In other words, they did not see it as something they received for “free.” Pension days were always upbeat, as many households depended on the cash for necessities as well as those locally considered “extras” such as sugar. Most pensioners lent their pension money to young people and kept detailed accounting of these loans in carefully maintained 51

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notebooks. When asking for a loan, youth would use the highest terms of reference for the elderly person, and speak very differently. In most of the instances that I am aware of, the elder was repaid at some point in a form of generalized reciprocity, in cash or in kind, when the borrower got back on his or her feet. While pension access is obviously not a type of knowledge, the way that one manages it is. Most of the elderly attached different values to money depending upon where it came from. The money earned by selling fruit preserves for the church was considered as “God’s money,” and the bills and coins were kept separately and given directly to the Church. Even if one did not have any other money to purchase a much-needed necessity, using “God’s money” for anything other than the Church was considered taboo. Money returned from loans was put back into the pension pot, and money derived from selling items for necessities was in another pot. Pension money, when it arrived at the post office each month, was considered “pay day,” and the actual money was referred to as their “pay.” When I asked some informants to talk more about this, some people said that they felt that they had worked all their life and that the state owed them in their old age when they could no longer work. Others went further to say that because they had not been properly compensated during apartheid (as wages for “non-white” people were much less than for “whites”), they saw their pension as a form of compensation for wrongs done to them by the apartheid apparatus. Many elders had several “accounting” notebooks in which they meticulously recorded “loans,” “debts,” “household accounts,” “livestock and agriculture,” “Church work (God’s money),” and miscellaneous expenses, something that people in the younger cohorts did not do. Neither did the younger cohort talk about their money as having different kinds of moral value in the way the elderly did. This shows that the elders had a unique form of value that was part and parcel of their generational ethos and did not fit in perfectly with market notions of value.

Knowledge II: Land Claims and Historical Memory: Knowledge of Land Use and Lineage One glance at the Steinkopf section in the Karoo and Namaqualand telephone book reveals the predominance of certain surnames in the community: Cloete, Englebrecht, van Wyk, and Vries dominate. Within these last names, smaller groupings or lineages can be identified (see Carstens, 1966: 106–19). Since I was aware of the past existence and significance of geslagte (lineage) in Steinkopf, I wanted to find out its role, if any, in the contemporary area. Most people laughed when I asked this question, and the old people often said,

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“Daardie is outyd se goed!” (That is stuff from the old days!). After this someone would invariably describe the characteristics of the various types of Cloetes (such as the “Links” Cloetes), Englebrechts, van Wyks, Vrieses, Balies, Saals, and so on, noting the behavioural stereotypes associated with each (the “Links” Cloetes are known to be feisty and short-tempered, for example). But few proceeded with their analysis, shrugging and grinning when I probed for a deeper history. “That is stuff of the past and no longer important,” they asserted. But these comments about geslagte didn’t coincide with my observations, particularly during discussions about land. Since the nineteenth century, debates around reserve boundaries abounded, and in the mid- to late 1990s, local discussions about lands lost to the British and the Boeren (Afrikaans farmers) were rife. Since the 1963 Rural Coloured Areas Act No. 24, when provisions were made to convert communal land to private holdings, there was tremendous interest, particularly from wealthy farmers and outside parties, in determining the boundaries of individual holdings, even though the Act had never been successfully implemented. After the 1996 local elections, the newly elected raad (the local political council) wanted to establish formal boundaries of the buitedorpe (the outskirts of the village proper) as well as of individual holdings. It was at these times that geslagte came to life as people noted their ancestral rights to land. It quickly became clear that borders often overlapped. In many of these cases, older people were consulted to deny or confirm the kin-based claims made by people on land. Below is an excerpt from the narrative of a 76-year-old woman who was asked by the raad to confirm her paternal cousin’s rights to graze his herd of goats and sheep on her father’s farm: There were two brothers: Jan Cloete and Yappie Cloete. Yappie Cloete’s son applied for my father’s farm. My mother and father are Yappie Cloete’s godparents. Now when Yappie was still a baby, my father said that he could inherit the farm, and dad wrote it down on a paper. But then dad had a stroke and he couldn’t talk anymore and the paper was lost. So he was living like a baby for three years and eight months and he couldn’t say that “so and so must inherit this” and “so and so must inherit that” and so on. Now this was in 1945. Now in the meantime, the raad had taken back the farm since no one was there. And I used to ask my mother, “What is going on with farm?” and she would say, “Oh, no my dear, leave it alone.” And then years went by and later, Yappie’s son wanted to use the farm but then the raad said that the land had never reverted to them and no documents had been sent to Pretoria. And yet, all these years, the raad had benefited since they put people on the farm who paid them taxes. And then Jan Cloete came along, and he had bought a large

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herd of livestock and wanted to use the farm and he told the raad that my father had given it to his brother and therefore he had a right to it. After all, he is one of us, a “Links” Cloete. Only the raad came to me to ask who dad left the land to, who he wanted to have it.... Jan Cloete made about a hundred children and now he has to find a little piece of land for each of them!

This excerpt shows the lineage concerns and their relationship to citizenship and land, and how older people are consulted to confirm or deny kin-based rights to land. It also speaks to a sense that there is not enough land, a sense that is quite true. For decades the carrying capacity of the land for livestock has been down and the soil has been affected by erosion. Land has long been contested for historical reasons as well.

“Queen Victoria and King Eddy” When Queen Elizabeth II visited South Africa in 1995, a vociferous group led by elderly farmers from the Namaqualand Burgers Vereneginde (NBV, a Citizens’ Council composed mainly of women and men over the age of 60) went to Cape Town to demand an interview with the Queen about the land that “Queen Victoria and King Eddy” had granted them back in the nineteenth century, but which they had subsequently lost to the De Beers diamond mines. It has been a common practice that both some in Steinkopf and other Namaqualand coloured reserves have engaged in over the century, much like what the Afrikaners also did to protest the 25,000 deaths of women and children in British concentration camps during the Boer War. It was not too long after this, in fact, that a middle-aged man from Steinkopf, Charles Cloete, initiated a land-claims case against De Beers in which he wanted to invoke the Doctrine of Aboriginal Title (see below). All this took place after a much-publicized visit of Archbishop Desmond Tutu to Canadian First Nations Reserves, and several First Nations Leaders, along with Grand Chief Phil Fontaine, visited South Africa. Namaqualand, with its reserve system, is comparable to Canada, whose officials were consulted by South Africa about how to handle the “native problem.”9 This confluence of events heightened the significance of the elders’ historical memory of traditional land use, and although they were not successful in meeting with the Queen or any members of the monarchy on that occasion, they did remind the younger generation of Queen Victoria’s broken promise and of the enduring sense that they deserve recognition and compensation for this transgression. Their act went beyond merely paying lip service to historical memory to demanding that memories of traditional land use and tenure be actuated in the contemporary moment.

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The Doctrine of Aboriginal Title The Doctrine of Aboriginal Title is a legal argument that has been used primarily by indigenous peoples in North America and Australia. The doctrine conveys the idea that even where Aboriginal peoples hold no formal title to lands they inhabit, the land is considered theirs even after annexation by the colonial government. On several occasions, it has been noted that the argument for the doctrine is strong in some instances in Namaqualand. Carstens, for example, has indicated that “If land claims were permitted in South Africa, as they are in Canada, members of the Baster peoples ... would surely be among the first to send their deputations to Pretoria” (1983: 138). Others have noted that “Namaqualanders can trace a continuous history of undisturbed possession to a substantial part of their traditional areas back to the beginning of the 19th century and beyond” (Surplus People’s Project, 1995: 24). It has thus become common-sense knowledge in Steinkopf that the present-day boundaries of their community encompass a significantly smaller area than that which was demarcated by Ferdinand Brecher and annexed and hypothetically “protected” for them by the British colonial government in the mid-nineteenth century. One burger, J.V., aged 83, described the original boundaries of the land designated to the Steinkopf mission, and how it was lost: The land of Kleinzee belongs to Steinkopf. They have to give it back. We will fight until they give it back. God knows who are the rightful owners. Port Nolloth belongs to Steinkopf. Alexander Bay belongs to Steinkopf. Concordia belongs to Steinkopf. O’okiep, Springbok, Melkbos Skuur, is also Steinkopf ’s land. Steinkopf was the head. Then they [whites] found the copper and our old raad didn’t know what they were doing and gave it to them. The superintendent from Concordia worked here, and the train tracks had to go through here up to Port Nolloth to transport the copper. We all knew we had lost because no matter what nation they come from, the white men always stick together.10

This elder, also a member of the feisty NBV, highlights the widely held perception that white people acquired lands dishonestly and at the expense of the local people who were entwined in an unequal power relationship with whites. After 1847, Namaqualand mission stations were protected by the British and the same government later favoured white trekboere (the Dutch settlers who migrated away from the Cape and crossed the Drakensberg Mountains to escape British rule) by granting them larger tracts of land as they reached the Orange River by the 1870s. In 1876, Brecher noted that the mission had lost “... Springbokfontein, O’okiep, Modderfontein and Nababeep [which had been] secretly bought by white people from our people . . .” 55

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(Carstens, 1961: 446). Cognizant of historical land-use and boundary issues, Charles Cloete became involved in a dispute over four farms that De Beers Consolidated Mines had put on the market in June 1993. The farms –– Klein Duin, Oograbies Wes, Witberg’s Kloof, and Grace Puts –– were believed to be part of the original lands given to Steinkopf by Queen Victoria when the colonial boundaries were extended to the Orange River. Rather than vying to purchase these farms, which he regarded as the property of Steinkopf in the first place, Cloete opted to pursue the land through the assertion of Aboriginal title. In the following excerpt from his affidavit, written in August 1994,11 Cloete outlines his understanding of the basis for Aboriginal title by underscoring certain missionary and colonial communications affirming the original boundaries of Steinkopf: I was born in the Steinkopf reserve in 1927, and I have resided there for a period of over 67 years. During this time I have been intimately involved in and made a study of the several land claims and disputes of the Steinkopf people in respect of the land constituting Steinkopf reserve, as well as adjacent to the reserve.... Largely as a result of the mission established by the London Missionary Society, written records exist of the correspondence between the local community and the colonial authorities ... not only do these records make it clear that the proprietary rights of the indigenous people were to be honoured and protected, but also serve as clear evidence of the extent of the land occupied by such indigenous people. These records show that as at the date of annexation, the greater Steinkopf area included a substantial part of the land lying to the west of the Steinkopf reserve, including all four farms which form the subject of the present application. In this regard, I refer to the well-documented land claim made in 1843 by Reverend Brecher on behalf of the Steinkopf community, which was formulated in the following words: ‘The boundary stretches from the Buffels River to the Orange River, a tract of land being 60 mile broad and 350 miles long’. In this regard, it should be noted that the Reverend Brecher was pressing the claims not only of the Steinkopf community, but also of Pella and Concordia communities when asserting the rights of the indigenous people to the land in question. It has at all times been accepted between the communities concerned that the land to the west of the Steinkopf reserve, including the four farms, was land which was traditionally occupied by the forbears of the present day Steinkopf community. Accordingly it is respectfully submitted that the Steinkopf community had a permanent and exclusive occupation of the farms in question as at the date of the annexation of the territory.

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The affidavit parallels Brecher’s description of British annexation (Carstens, 1966: 23): ... when in 1846, the Government intended to extend the boundary, the natives were requested by the Civil Commissioner and Resident Magistrate, Mr. Ryneveld of Clanwilliam, whether they would like to become British subjects or not. I advised them to give their consent to this request on account that the British Government was a good Christian Government which would do them no harm but protect them against anyone who might do them wrong. So the Captains of Steinkopf gave their consent to the proposition of the government, and my Captain at Steinkopf said: [English translation provided by Carstens in note 10].... “What the great Master wishes to do I don’t know; I and my people, submit ourselves to the Queen on these conditions, that her Majesty’s Government shall protect us and our land, which we have occupied from olden days, from Boers and others who are alien to us, so that we may live peacefully and honestly.”

Cloete and his collaborators were forced to back down by a regional NGO heavily sponsored by foreign NGO capital, and the De Beers claim to the land was upheld in court in 1995. Had it occurred, it would have been the first time that Aboriginal title had been invoked in South Africa, a context in which the majority of the population could claim to be indigenous (cf. Sharp, 1996: 98). But they had much support from younger farmers, and even people who had no stake in farming at all, who felt that the elders’ knowledge of traditional land tenure could be a powerful tool to wield in future battles against the state and private sector. For some, this act is just the beginning of what could be a florescence of such claims in Africa (Henrikson, 2004) and the era of increased valuation of elders’ knowledge.

Knowledge III: Being Nama and Community Care The final type of knowledge that elderly people in Steinkopf can draw on is that of their “Namaness.” During the United Nations Decade of Aboriginal Peoples (1994–2004), there was in Namaqualand, as elsewhere in the world, a surge in people’s expressions of their Aboriginal links. There were always aspects of Nama material culture in Steinkopf, such as Nama roundhouses, the manner in which women wore their head scarves and adorned themselves with beadwork, and Nama medicines. In the 1960s and again in the 1990s, however, there were more intense public expressions of Namaness. In the 1960s the local Dutch Reformed minister legitimated Nama expressions among the community, which was on par with the apartheid state’s larger effort to transform South Africa’s racial system into an ethnic system (cf. 57

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Oakley, 2003, 2006). This minister, in fact, learned to speak Nama and regularly visited the distant farming hamlets to talk with and, as he said to me, to “learn the culture and language of the Nama, a true God-fearing people.” By 1970, he had assembled a team of middle-aged Nama people into a church choir and advocated that younger people learn to speak the language. It was at this point, with the congregation going out among the community and seeing first hand the effects that migrant wage work had had on some families, that the idea to develop an old age home emerged. Specifically, they encountered numerous elderly individuals living all alone on farms with little food, water, and, according to now elderly members of the church council, low levels of hygiene. The younger caregivers were away on migrant wage work in the regional mines. The community lobbied the state for funding but for a decade was refused, with the state insisting that non-whites had their built-in social security net in the form of “tradition” (Oakley, 1998). In the first years, then, the community self-financed the home, and also sought funding from Sweden and the Netherlands. It was only in the late 1970s that the community succeeded in securing funding from the state, when it became more apparent that migrant wage work made it difficult for families to fulfil their traditional forms of social reproduction. The home became a significant and positive locus of care and, more importantly, a new form of non-familial social reproduction. In this, the Nama connection became highlighted as that part of their tradition, which was important due to the high premium the Nama placed on the status of the elderly, as well as other valued characteristics such as language, medicine, and a “third gender” role, as discussed below. The first people to become “residents” of the old age home, in fact, were an elderly Nama couple who at first refused to go because they didn’t want to leave their farm. When members of the church council told them (on several occasions) that they could build and live in their Nama roundhouses on the church grounds, they finally acquiesced. As more roundhouses appeared on the church grounds, the church’s legitimacy and, simultaneously, the Nama lifeway, were enhanced. Nama medicines have been much heralded in Steinkopf to treat things that biomedicine fails to –– a failure that is perceived to be increasing. Like the distant culture to which these medicines hearken, the medicines themselves are hard to procure, requiring day-long trips into the veld (untamed lands far from the settled areas). As this excerpt from Oom Lukas, an elderly man who was brought up from birth by his parents to speak Nama, describes, The Nama medicine works wonders but it is very hard to come by. /nu/nu and klipswit [both are types of wild flowering herbs] and the daisies, all these can be 58

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found in the mountains. And the /nu/nu lives in a very soft ground and thrive after it rains and the new rock hard buds come out, that is where you get the best /nu/nu from. And the daisies medicine grow from out of the rocky soil. You must soak the blossoms in water and drink it down. It is very good for liver problems and jaundice. But these are so rare and hard to find. You must go to the veld. Doctors from Cape Town were interested in our medicines and came to me to talk about them. A researcher from Pretoria also came to me and other Nama people in Steinkopf to talk about our medicines and ways of healing.

Other Nama elders, especially women, were heralded for their metaphysical powers to heal and tell people’s fortunes. Nama women traditionally had high status due to their ownership of milk and milk products (Carstens, 1996) and believed that women were born with a mystical ability. There were at least seven such people in Steinkopf known to me first hand, and allusions to others were made through second-hand accounts. All were between the ages of 60 and 80. Many were consulted by people of all ages on a weekly basis for advice about how to handle all manner of social, physical, and moral ills. Some of these women were married, but most were not, occupying the so-called third gender category characteristic of the Nama. In Steinkopf, several people in this category are considered neither male nor female. They do what is considered both men’s and women’s work, and in some cases cross-dress. All are the last born in the family, and all are known as healers and are active members in the Dutch Reformed Church. All speak Nama, and two live in a traditional Nama roundhouse. One of these, the only male of the seven, actually sold his concrete house in the 1980s to relatives and erected his Nama roundhouses, consisting of three (a living house, a cookhouse, and one for storage). Locally, these people are highly valued, though not in what can be considered a public forum. That is to say, all the consultations are done in the private domestic sphere, with the exception of the Nama choir and the public Nama Bible readings. Nama is considered the first language and first lifeway, and considered “close to home and close to heart.” Since the 1960s many young people have gone out of their way to learn Nama from the elders. Therefore then, and today, Namaness and knowledge about things Nama are locally valued characteristics and an important form of cultural capital for the Steinkopf elderly in an increasingly modernized setting (cf. Weilbel-Orlando, 1988).

Final Remarks In this chapter I have attempted to demonstrate the various ways that people in Steinkopf have retained a strong communal spirit and, in spite of regional 59

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economic changes, have attempted to maintain a humanistic approach to local reproduction. I have also shown that the elderly people still have a strong sense of rightful entitlement, in part based on the remnants of the agrarian economy, their historical memory of their local written constitutions protecting communal land tenure, and increasingly due to the uses of their traditional knowledge to engage in modern land claims. Some other elders have also found a voice, and a publicly valued status, in their links to their Nama ancestors or through effectively wielding their social pension funds. Finally, I have suggested that an old age home ought not to be a priori viewed as a sign of the deterioration of humanism. In this case, rather, it was an affirmation of humanism and an effort to simultaneously resist the industrial state’s primordialist claims toward “non-white” communities, as well as to retain the local notion of community. All of this evidence points away from the inevitable decline and low status often attributed to aging in the context of industrial capitalism and instead points to a need for concrete social funding and, indeed, the conditions that make basic human necessities such as livelihood and land a reality.

Notes 1. All interviews were conducted by the author in 1994–96 and again in 2003, primarily in Afrikaans, English, or a mixture of both, the latter of which is common in Namaqualand. Most elderly informants used Nama words as well. 2. People retire only from the formal workforce. As a rule, the elderly want to keep working and continue to do so in various ways such as selling preserves, homegrown produce, handiwork, etc. 3. Pension day is always referred to as “pay day.” 4. This was a common term used after the fall of apartheid in 1994 to refer to the new inclusive South Africa where everyone, regardless of race, was considered a citizen. 5. In fieldwork at the Steinkopf clinic I observed that white doctors seldom touched their patients when they came on their weekly visits. If a patient coughed, regardless of age, they were understood to have TB. If the patient was young and coughing, they were often diagnosed with TB as a symptom of HIV/AIDS, in the absence of a blood test. In other words, physicians seemed to have what Wailoo (2001) refers to as a “diagnostic attachment” toward their non-white patients in regard to TB and, more recently, HIV/AIDS. This is in need of further ethnographic investigation. One of my interests is to track down how statistics are kept and reported, as TB has always been the primary cause of death among working-age adults in industrial-era South Africa. My hypothesis is that if we analyse statistics 60

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6.

7.

8.

9.

10. 11.

over the twentieth century, the death rate will not be that different, and the socalled HIV/AIDS pandemic is overinflated and based on imprecise disease differentiation. This shows the relevance of participant observation to see what is really happening on the ground and, more significantly, reveals the politics of a country that was poised for social revolution and seeking a socialized economy, only to be converted into seeking cheap pharma-bandaids for HIV/AIDS. TB, a preventable disease of poverty, stress, and poor sanitation, can easily be halted if people are provided with decent jobs, homes with proper sanitation, and access to nutritious foods. In 1869, the Cape Copper Company completed a railway from Port Nolloth to O’okiep which extended through to Steinkopf (Marais, 1939: 81). There is no longer a railway; however, its past existence and the flurry of business and passenger transport constitute a significant local oral history among older people. The British colonial government issued tickets of occupation to both acknowledge and offer a modicum of theoretical “protection” to the residents who requested such a certificate. Although such an area was legally considered the property of the Crown, it was important to have a ticket of occupation to prevent the loss of land to other groups or individuals. The imposition of the head tax, while important, can only partially account for the reasons behind work migration. It should also be remembered that the problem of overgrazing and soil erosion made agriculture increasingly less productive. Finally, the desire to acquire certain commodities, goods, and services would have also been an important factor in labour migration. The Tamarack documentary We Have Such Things at Home (1997) chronicles this remarkable event in detail. The director errs, however, in focusing on eastern South Africa; the western portion, and in particular the Namaqualand Reserves after the Glen Grey Act, offers a much more historically accurate link between Canadian and South African reserve systems. He meant that the British and the Afrikaners put their ethnic differences aside in the name of the common “white” good. Among many oral and written sources, an important component of Cloete’s affidavit was derived from Carstens’ (1966) ethnography.

References Carstens, P. 1996 (November). “Mothers, Daughters and Grandmothers in Khoi Society.” Paper presented at the African Studies Association 39th Annual Meeting, San Francisco. Carstens, P. 1983. “Opting out of Colonial Rule: The Brown Voortrekkers of South Africa and Their Constitutions, Part One.” African Studies Journal 42(2): 19–30. 61

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Carstens, P. 1966. The Social Structure of a Cape Coloured Reserve: a study of racial integration and segregation in South Africa. Cape Town: Oxford University Press; repr. Westport, CT: Greenwood Press, 1976. Carstens, P. 1961. The Community of Steinkopf: an ethnographic study of social changes in Namaqualand. Ph.D. Thesis. University of Cape Town. Henriksen, G. 2004. “Consultancy and Advocacy as Radical Anthropology.” Pp. 67–79 in R. Bastin and B. Morris (Eds.), Expert Knowledge: First World peoples, consultancy and anthropology. Herndon, VA: Berghahn Books. Marais, J. 1987. O’okiep Copper Company Ltd. 1937–1987. O’okiep: O’okiep Copper Company. Oakley, R. 2006. “Collective Identity through Industrial Capitalism in Steinkopf, a Communal Coloured Reserve, ca. 1926–1996.” Journal of Southern African Studies 32(3): 489–503. Oakley, R. 2003 (December). “The Role of the Volkkerke in the Development of Ethnic Identity Namaqualand, South Africa.” Itinerario: Journal of European Overseas History 3/4: 189–204. Oakley, R. 1998. “Local Effects of New Social Welfare Policy on Ageing in South Africa.” Southern African Journal of Gerontology 7(1): 15–20. Schilling, C. 2004. The Body and Social Theory. 2nd ed. London: Sage. Sharp, J. 1996. “Ethnogenesis and Ethnic Mobilisation: A Comparative Perspective on a South African Dilemma.” Pp. 85–103 in Edwin N. Wilmson and Patrick McAllister (Eds.), The Politics of Difference: ethnic premises in a world of power. Chicago: University of Chicago Press. Surplus People’s Project. 1995. Land Claims in Namaqualand. Cape Town: Surplus People’s Project. Tsuji, Y. 1997. “An Organisation for the Elderly by the Elderly: a senior center in the United States.” Pp. 350–63 in J. Sokolovsky (Ed.), The Cultural Context of Aging: worldwide perspectives. Westport, CT: Bergin and Garvey. Wailoo, Keith. 2001. Dying in the City of the Blues: sickle cell anemia and the politics of race and health. Chapel Hill: University of North Carolina Press. Weilbel-Orlando. J. 1988. “Indian Ethnicity as a Resource for Aging: you can go home again.” Journal of Cross Cultural Gerontology 3: 323–48. We Have Such Things at Home. 1997. Tamarack Productions. .

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CHAPTER FOUR

La Buona Vecchiaia: Aging and Well-Being among Italian Canadians

Sam Migliore and Margaret Dorazio-Migliore

Introduction In the spring of 2005, Zia Rosina, an 83-year-old widow, experienced a major health setback.1 She was unable to get out of bed one morning. A severe case of osteoporosis had left her with damage to three discs in her spinal column, as well as severe pain in her right hip and knee. Zia Rosina, however, was determined to remain in her own home. She struggled with months of physiotherapy, purchased a cane and a walker to move about the house, and accepted homecare assistance for one or two days per week. Her son, daughter-in-law, and niece helped out with the purchase of groceries and various household chores. Then, one day, Zia Rosina found herself in a difficult situation. She wanted to attend the Mass in honour of the fifteenth anniversary of her husband’s death; however, due to work-related commitments, family members were not in a position to take her to the service. Rather than miss it, Zia Rosina called a taxi and made her own way to the church. After the Mass, she walked with a cane to a nearby supermarket to purchase groceries. She then walked, pushing a grocery cart, eight blocks to her home. According to Zia Rosina, “God did her a great grazia” (“favour” or “act of grace”) –– although in pain, she was able to attend the church service and recover enough to be able to do things on her own. Two years later, she is still managing to move about and care for many of her needs. There is much to learn from Zia Rosina, and others like her, which disturbs some of the central associations of aging with loss. 63

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The gerontological literature often views aging in terms of a linear model leading to “inevitable loss” –– the loss of physical and mental capabilities, and, ultimately, the loss of life (see Chapter One in this volume; see also Ahmed et al., 2006; Crews, 1993; Fried et al., 2006; Goodpaster et al., 2006; Neuropathology Group of the MRC CFAS, 2001; Robert, 2006; Somel et al., 2006). This notion of “loss,” albeit in modified form, is also central in much of the socialscientific literature on aging.2 Many studies show that people, as they grow older, can encounter a wide variety of social circumstances –– such as the death of a spouse, the loss of social support, age-related discrimination affecting one’s social and self-image, and/or a decline in socioeconomic standing –– that may have serious consequences for their quality of life (see Bonnesen & Burgess, 2004; Corner & Bond, 2004; Hazan, 2002; Simms, 2004; Tomaka, Thompson & Palacios, 2006). Although it is important to identify and address the negative effects people may experience due to a decline in their physical, mental or social situation, it is also important to avoid generating a negative representation of aging itself. An exaggerated emphasis on “loss” runs the risk of masking the rich diversity, ambiguity, and complexity surrounding the experience of aging (Stephenson, 2009; see also Counts & Counts, 1996; Lock, 1993; Whitaker, 2005). This, in turn, helps construct and maintain a representation of “older people” as “Other” even within their own local communities (Hazan, 2002). In our opening example, Zia Rosina has experienced the death of a husband and, more recently, the loss of physical mobility. She also continues to experience a great deal of pain. At the same time, however, she has struggled successfully to regain some of her mobility, and she has found ways to accomplish some of her goals. To view aging in terms of “inevitable loss” is to miss the “ups” and “downs” people encounter in their everyday life experiences, and to ignore their subjective understandings of these experiences. This gives the impression that people are either passive or unable to influence a process that has serious implications for their quality of life as they grow older. Essentially, by ignoring the many adjustments people make to their circumstances, their agency is erased, and along with it any hope of understanding what really happens to us as we grow old. In this chapter we address three interrelated issues. First, we discuss some of the meanings Italian Canadians (mainly from central and southern Italy, including Sicily) attribute to la vecchiaia (“old age”), with particular attention to the distinction between la buona vecchiaia (the “good old age”) and la mala vecchiaia (the “bad old age”). Second, we identify some of the implications these meanings may have for the quality of life of older Italian Canadians. Third, we examine some of the ways people, individually or as part of a group, actively seek to promote a sense of well-being in later life. As part of this dis64

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cussion, we address the Italian concept of arrangiarsi. Literally, arrangiarsi refers to how people attempt “to make do” or “get by” in specific circumstances, particularly difficult ones. The meanings associated with this concept, however, are much more complex, and we will address these complexities later in the paper through specific case histories from both southern Ontario and the lower mainland of British Columbia.

Background The two of us have considerable experience conducting research among Italian Canadians, dating back to the early 1980s (e.g., Dorazio-Migliore, 1999; Dorazio-Migliore, Migliore & Anderson, 2005; Migliore, 1983, 1997, 2001; Migliore & DiPierro, 1999). Much of this work has focused on issues related to illness narratives, caregiver narratives, and the language of distress –– i.e., the various verbal and nonverbal idioms people use to communicate their pain and suffering to significant others in a culturally recognizable and appropriate way (Migliore, 1997; see also Nichter, 1981; Parsons, 1984; Parsons & Wakeley, 1991). This paper makes use of the knowledge we have gained over the years, as well as new research. We currently are involved in a research project, along with Constance and John deRoche (of Cape Breton University), that examines the interrelationships among culture, well-being, and a sense of place among Italian Canadians in three locations: industrial Cape Breton, Nova Scotia; southern Ontario; and the lower mainland of British Columbia. We chose these sites for a variety of reasons. First, we all have strong connections to Italian society and culture, including various friendship and kinship relations within one or more of these three communities. In this respect, our work represents auto-ethnography or native anthropology; we are conducting a set of ethnographic studies among our own people (see Abu-Lughod, 1993; deRoche & Dorazio-Migliore, 1999; Jones, 1970; Migliore, 1993; Ryang, 1997). Second, we chose these locations to build on our previous research within the three communities. Third, since Canada has a relatively large population of middle-aged and elderly Italian immigrants who arrived here in the 1950s and early 1960s, their conceptions and experiences of distress, aging, and well-being should provide a basis for formulating policies to assist this particular population. In this chapter we describe some of our findings based on participant observation and informal interviews with 18 individuals in two of the three locations, southern Ontario and British Columbia. Although we have spoken with people of different ages and backgrounds, most of the individuals taking part in the study fit into the over-55 age range. The primary difference between the two groups is that the individuals interviewed in southern 65

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Ontario most often came to Canada as immigrants from Sicily, while those interviewed in the lower mainland of British Columbia are predominantly children or grandchildren of immigrants from central and southern Italy.

Culture, Ambiguity, and La Vecchiaia Italian Canadians are a diverse group or, more accurately, a diverse set of groups within Canadian society. This diversity occurs due to a wide range of factors, including the fact that individuals may 1) be of Italian background, but born in Canada, Italy or some third country (such as Argentina); 2) be linked to different regions of Italy; 3) have moved and adjusted to life in different regions of Canada; 4) have different educational and socioeconomic backgrounds; 5) have different English, French, or Italian (including dialect) language skills; and 6) have varying attachments to Italy, or a different sense of what it means to be Italian in Canada. The situation becomes even more complicated once we add differences related to age and gender. This diversity, then, makes it difficult to speak of one overarching “Italian Canadian” culture. For this paper, we regard culture as a concept that must accommodate notions of diversity, variability, and ambiguity. We suggest that [C]ulture involves processes and practices constantly occurring within powerladen social contexts and locations to create fluid, contested, negotiable, ambiguous meanings.... [This] concept of culture includes the interpretive and linguistic processes involved in giving meaning to the world, the various interpretations so created and the dynamic political contexts and cultural fields within which language and symbols, interpretation and meaning-making take place. We include contexts and fields because, rather than simply being a neutral backdrop, politically charged contexts (racialization and gender oppression, dislocation and immigration, stereotyping and positionality) change the meaning of processes, activities and cultural productions. (Dorazio-Migliore, Migliore & Anderson, 2005: 344–45)

This perspective on culture allows us to discuss Italian-Canadian notions of aging and la buona vecchiaia in terms of both general patterns that reflect shared ideas within a community (or set of communities), and the variable meanings that individuals attach to these concepts depending on context. We argue that the meaning of la vecchiaia or “old age” is not contained in the phrase itself, but rather in how people use their cultural knowledge at particular times and places (see Migliore, 1997, 2001). Individuals who immigrated to Canada from Italy as adults, for example, sometimes make use of proverbs and related phrases to communicate complex ideas in a simple way (Migliore, 1993, 1997). Some of these phrases pres66

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ent “old age” in negative terms. We witnessed an example of this during an informal conversation with Zio Nino, a man in his early 70s. Zio Nino stated, “la vecchiaia fa schierzi bruti” (“old age plays ugly or nasty tricks on people”) in response to difficulty in remembering something he wanted to say to us. Used in this way, the phrase can be interpreted as simply a jest making light of his temporary memory lapse. At the same time, however, the statement carries the implication that, as one ages, one can expect to experience effects that are undesired and beyond one’s control. The example above is relatively benign in its depiction of the aging process, especially in the context within which Zio Nino made his statement. Others, however, have taken the discussion further to suggest that la vecchiaia itself is a carogna. Literally, the term carogna refers to carrion or a carcass, and, depending on the context, it can be used to refer to someone disparagingly as a “swine” or a “slut.” This phrase depicts “old age” not only as something negative, but also as something unclean and, metaphorically, linked to sickness and death. In certain respects, this depiction of la vecchiaia appears to be consistent with the ideas presented in much of the gerontology literature linking “old age” to notions of “inevitable loss.” Among Italian Canadians, however, the phrases and meanings people associate with la vecchiaia tend to be ambiguous, vague, and variable. A proverb we have heard on a number of occasions helps illustrate this point: La gallina vecchia fa il buon brodo (“An old hen makes good broth or soup”). This proverb can be used to signify that the aging process is not necessarily something negative. As people grow older, they gain knowledge and experience that can be of great use in various situations. Elders have something of value to offer the younger generations. We asked Zia Rosina what she thought of the phrase la vecchiaia is a carogna. She acknowledged that she had heard the phrase used disparagingly in both Italy and Canada, and then added, Oh yes. [laughing] People see a woman who can’t walk, has a hard life, and at that moment [possibly feeling sorry for her, or maybe to show disrespect] they might say, as a joke, “oh, la vecchiaia is a carogna ...” because there is nothing that can be done –– she can’t dance, can’t walk.... But, the woman, who may be 90, 95 years old, might respond, “la vecchiaia is a carogna as you say, but it is a vergogna [shame] for someone not to reach it.”... See, she is a daring old woman. She [is pointing out that she] has reached 90 years of age, [and asks implicitly] “will you?”

Although Zia Rosina recognizes that various health problems may occur in conjunction with la vecchiaia, she transforms a negative depiction of “old age” 67

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into something positive –– something that not everyone is able to achieve. La vecchiaia is an accomplishment that one can be proud of. Zia Rosina’s statement illustrates that the meanings people associate with la vecchiaia are not only ambiguous and variable, but also contestable. People can manipulate the ambiguity surrounding concepts such as la vecchiaia, as part of a language of argument, to contest the representations of others and/or promote their own points of view (see Migliore, 1997). We have also noticed that certain individuals over 60 are very much aware of the negative connotations inherent in the word “old,” and dislike using the term in reference to themselves. Paola, a 60-year-old mother of two, for example, stated, “I hate to use the word ... old ... [it] bites or sucks, as the kids say, because you’re considered . . . well almost invisible.” A small number of the individuals we have communicated with have gone as far as to drop the phrase la vecchiaia and replace it with the notion of la terza età (the “third age”). La terza età refers simply to another phase in one’s life –– a phase that can be rewarding, happy, and active. These individuals, in our view, are attempting to distance themselves from the negative implications people sometimes associate with la vecchiaia by eliminating the phrase itself. In contrast, commercials shown on Italian-language television programs attempt, at times, to take advantage of some of the negative ideas people associate with “old age.” Zia Rosina described one of these commercials to us: “In the commercial, an older woman is seen buying well-made, expensive clothing. A friend asks her why she is doing this. The woman responds, ‘I don’t ever want to grow old. Even if I am 90, I want to dance with my husband.’ In other words, ‘no one wants to have an old age’ [laughs].” For Zia Rosina the commercial is humorous, far removed from her everyday life reality. In a world of contested and ambiguous meanings, however, television commercials serve as a direct attempt to manipulate cultural meanings to promote consumption as a way of avoiding the semblance of aging.

La Buona Vecchiaia Although we recognize the ambiguous and variable nature of concepts such as la vecchiaia, certain general patterns have, nonetheless, emerged from the data. In discussions of the aging process, people typically distinguish between a buona vecchiaia (“good old age”) and a mala vecchiaia (“bad old age”) and identify a wide range of factors that may affect their quality of life, in both positive and negative ways, as they grow older. Some of the more common, often intertwined factors include health, family, mental health, financial security, being able to live in one’s own home, and, in some cases, religion.

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Health and Well-Being Italian Canadians regard physical and mental health as important aspects of a “good old age.” Zia Lucia, a 75-year-old widow, began her discussion of a buona vecchiaia with a comment on the importance of financial security in one’s senior years (see below), and then quickly turned her attention to health and sickness. Stated simply, she contends that “a buona vecchiaia is when someone is healthy . . . doesn’t need many medicines. . . . A mala vecchiaia is when . . . someone is sick.” Zia Yolanda, an 83-year-old resident of British Columbia, agrees with this statement but takes the discussion one step further: [Health is] having all your faculties, all your bones and teeth and everything else.... [I consider myself] fairly healthy, you know, for my age. I try to do something every day. I take a few vitamin pills, I keep good sleeping hours, eat healthy ... maybe a little bit too much at times, but other than that.... I [also] take cholesterol ... and high blood pressure pills ... and that’s it.

Italian Canadians recognize that a person can take positive steps, at any age, to promote good health. In addition, as Zia Yolanda’s statement implies, people acknowledge that the health-care system can serve a vital role in helping people maintain a better quality of life. In general, however, people suggest that a mala vecchiaia is more likely to occur in cases where a person must undergo highly intrusive treatments, and she or he experiences a great deal of pain and suffering. Although Italian Canadians link a “good old age” with health, ideas about health tend to be presented within a larger context. According to Paola, health is ... everything to me.... If you’re well, everything else seems to fall into place, but if you’re not well even the nicest things have a pall over them. So I just feel that being well, being healthy is at this stage of my life absolutely everything.... Health is bodily health ... well-being is, I think, a sense of peace.... Bodily health really helps ... but sometimes you can cope if you have a sense of well-being, also friends, family, etc. I think that’s a difference ... one is bodily health ... the other is more like mental health ... more of a feeling of being ok.... [Stare bene (being well) covers both health and well-being.] I think one really influences the other ... but I think you can have one without the other. But you have to work at it.

For Paola, and many other Italian Canadians, then, health is an important component of a buona vecchiaia. A “good old age,” however, involves more than physical health; it involves a sense of stare bene (being well). Well-being, in turn, involves peace of mind –– the type of peace of mind that derives from 69

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various sources, including physical health, social and economic stability, and, in some cases, spiritual considerations. Family, and Financial Security In popular culture, and sometimes in scholarly literature, the “Italian family” takes on a quasi-mythic quality represented by strong, extended kinship ties, harmonious relations, a tradition of caring for elders at home and, particularly for women, a natural and limitless ability to nurture and care for others (Dorazio-Migliore, Migliore & Anderson, 2005). Although this is a positive representation of the Italian family, it is nonetheless a stereotype that does not match the experience of all Italian or Italian-Canadian families. As an ideal, however, some of the ideas associated with this stereotype can be found in people’s conceptions of a buona vecchiaia. Zia Rosina, as indicated earlier, is clearly determined to live in her own home, “with the help of God,” for as long as possible. This desire, in part, is due to her wish for a degree of independence. At the same time, Zia Rosina stresses that she does not want to be a burden on her family. As long as she is able to remain in her own home, Zia Rosina reasons that she will not be a drain on her children’s time and resources. She is attached to her children and grandchildren, and she wishes she could do more for them. During one of our interviews, she had this to say about what it means to have a “good old age”: La buona vecchiaia is based on the type of life you have had. A person has never had to go without anything.... She has had the happiness of having had children ... children who respect her. When the children are married, they have a good married life. Then a person can say that she has had a buona vecchiaia. Because, when there is the vecchiaia, a person is not able to do everything ... but they have the happiness in their heart from their children and other relatives. Instead, if a person sees herself abbandonata [abandoned], and gets discouraged ... then she will have a mala vecchiaia [“bad old age”]. The daughter has abandoned her, the son has abandoned her, she can’t do anything, she feels lost, she feels discouraged, and it cannot be said that she has a good old age.

For many Italian Canadians, a buona vecchiaia is linked, to a great extent, to positive, supportive, and respectful relations between close family members. A mala vecchiaia, in contrast, is associated with the absence of family support or strained relations with loved ones. Zia Rosina elaborated on this aspect of a mala vecchiaia by reciting a short saying she recalled from her pre-emigration days in Sicily:

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One father can raise one hundred children But one hundred children can’t support one father.

We heard the same statement on several occasions during our research with members of a Sicilian community in a large urban centre in southern Ontario. The statement, apparently, is based on a true story of a widower who, through his hard work and determination, was able to raise eight male children successfully on his own. He fed and clothed his children, sent them to school for an education, and helped them in their efforts to marry and establish their own households. In time, the father became sick and frail. According to the story, none of the sons paid the man a visit, let alone offered him any support. The sons were too busy, and too concerned with their own immediate family situations. When the father recovered from his sickness, he started to walk around town stating, for everyone to hear, “One father can raise one hundred children....” Each time someone told us this story, they went on to provide additional tales about neighbours or friends who had experienced similar problems with their children. They also went out of their way to let us know that, thankfully, their own children were caring and supportive. The mala vecchiaia, in this context, is associated with a lack of respect for a parent who is worthy of respect. In a sense, the story provides a moral commentary on what people should avoid in their dealings with aging parents. At the same time, however, we suggest the story constitutes a cautionary tale for parents themselves. The story serves as an acknowledgement that, although a loving, caring family provides a basis for a buona vecchiaia, not all families are the same. Aging parents must be prepared to look out for their own interests. Zia Lucia, for example, expressed this sentiment as part of her discussion of a “good old age.” She stated that a buona vecchiaia occurs “when someone has a pension.... With a pension ... the person has serenity ... they don’t need anything from anyone.” Case Study 1: Zia Ermalinda –– A Pleasant Surprise The preceding discussion indicates that, among Italian Canadians, having both family support and financial security goes a long way toward providing a strong basis for a buona vecchiaia. The following case will serve to illustrate some of these points. Our description of the events involved in this case is based on conversations we had with several members of Zia Ermalinda’s family, including her 83-year-old daughter, as well as our own knowledge of the circumstances they described to us. Ermalinda (Grannie or Nonna to her grandchildren, and Ma to her children) died in her 87th year back in 1969. She had lived an eventful life. Born in a small 71

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Abruzzesi village in 1882, she grew up struggling, like the rest of her family, and all the local families, until she married at age 26 and left for Canada at age 33. Times were hard for the whole area, with little work and few opportunities. Tony, her husband-to-be, was from a nearby town. In 1906, he left Italy for Argentina to find work. Working on Las Pampas as a ranch hand or slaughterhouse worker, he stayed there for five years. When Tony returned to Italy, in about 1910, he and Ermalinda got married. They had not previously been engaged, and neither was the other’s first choice. But because of the harshness of the times –– poverty, sickness, unemployment, travel, and war –– they had each lost their original choices. In 1912, their son was born. Soon afterwards, Tony departed for Canada, again to find work. It would be seven years before Ermalinda and Tony would see each other again. During this time, Tony built a house in Vancouver, and Ermalinda waited and waited in Italy with their young son. Finally she joined her husband in 1919. In Canada, Ermalinda and Tony grew closer. They had two more children, a girl and another boy. There were lots of Italian families in Vancouver’s East End and Ermalinda was relatively happy. Then she was the victim of a robbery: hit over the head with the butt of a pistol, robbed of a small amount of money, and “thrown into the bushes” a few blocks from her home. Years later she also developed some type of illness, perhaps depression, which confined her to bed on many days. Ermalinda and Tony also grew older. Both were in their mid-70s when Tony died rather suddenly. The family now turned to Ermalinda. They worried that this would be the last straw –– the final blow that pushed her over the edge. She would surely go crazy and sink into a lethal depression, and certainly be incapable of carrying on, but this did not happen. In fact, she rallied and became a new person. Suddenly she had money and a measure of independence. She took two trips to visit Italy (neither she nor Tony had previously “gone back”) and lived with her children, four months of the year with each. She had lots of interaction with her grandchildren and their friends. And in her late 70s and 80s she blossomed. She became active, animated, communicative, and funny. Because this case description involves composite narrative involving retrospective information about a particular individual, it is difficult to discuss Zia Ermalinda’s personal thoughts and feelings. The narrative, however, does serve as an important source of information about how family members view Zia Ermalinda’s experience of la vecchiaia. With this in mind, we can say that Zia Ermalinda experienced a number of hardships during her lifetime. Despite these hardships, however, she was able to overcome the loss of family, country and, to a certain extent, culture that occurred with emigration to Canada; the loss of her husband; and serious health problems. In her later 72

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years, Zia Ermalinda “shone like a bright star much to everyone’s amazement and delight.” Imbedded in the narrative is the notion that Zia Ermalinda experienced a buona vecchiaia –– an “old age” characterized by financial security, a measure of respect, a loving relationship with her children and grandchildren, and return visits to her family in Italy. The problems and losses Zia Ermalinda experienced seem to have occurred earlier, rather than later in life. “No Place like Home” Various studies indicate that notions of “place” and “home” play a significant role in the well-being of aging adults (see Becker, 2003; Cutchin, 2005; Milligan, Gattrell & Bingley, 2004). Among the Italian Canadians we spoke to –– in both southern Ontario and the lower mainland of British Columbia –– there is a strong desire to remain in one’s own home for as long as possible. The home represents not only a physical location, but also a place where a person feels both familiar and comfortable with her or his surroundings, is able to maintain close relations with friends and long-time neighbours, and has invested a great deal of physical, emotional, and cognitive energy over a long period of time. Given these meanings, it is not surprising to find that many Italian Canadians, at least ideally, tend to associate life at home with a buona vecchiaia. Depending on one’s specific circumstances, however, remaining at home may not be a viable option. In these cases, people may experience a tension between wanting to live with family and being determined not to burden their children. The children, in turn, may experience their own tensions –– between wanting to help loved ones, and the social and material circumstances of their own situation. These tensions can lead, among other things, to feelings of anger, guilt or inadequacy (see Dorazio-Migliore, Migliore & Anderson, 2005).3 For Zia Ermalinda, the decision to spend a portion of her time with each of her children served as a practical and, although not ideal, positive solution. For others, out of choice or necessity, the solution has been to enter into a “home” or assisted-living complex. In fact, in anticipation of this eventuality, Italian-Canadian communities in some large urban centres have established assisted-living residences –– such as Villa Carital in Vancouver and Villa Colombo in Toronto –– that cater to Italian-speaking residents (see Harney, 1998). Although these residences have provided a welcome alternative for some individuals, there is still a real need for more culturally appropriate services for the large, aging immigrant population. In addition, for the immigrant generation, living in a home can raise ambivalent or hostile feelings, whether the residence is or is not part of an Italian-speaking complex. Zia Linda, a Sicilian-Canadian woman in her late 60s, for example, associates living in an assisted-living complex with a mala vecchiaia: 73

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Well, I hope God gives me a buona vecchiaia, because I deserve it. All of my life I have taken care of, first ... my husband, who was sick, then ... my mother. Now we will see who will take care of me. I hope God will ... remember me for all I have done in my life.... A mala vecchiaia. Oh, I would rather die than go through that. I don’t want to live long if I have to suffer. If I am like my mom [in her 90s, good memory, able to walk] then I would be ok. But, if I have to be sick, or go to the “home,” I would rather die. I am not afraid of dying.... Everyday I say, God I am here, anytime you want me I’m ready.... I don’t steal, I don’t do anything wrong. I am not afraid to go to heaven. If I am going to end up in the “home,” it is better that I go to heaven.

Zia Linda’s statement makes it clear that she does not want (or deserve) to spend her later years in a home. She is less clear about what should happen. Ideally, her family should take care of her just as she has diligently taken care of other family members. Her statement is left open to interpretation, however, to avoid voicing anything that might be regarded as pressure or a negative comment on her family. At a superficial level, the discussion above lends credence to the notion that the aging process is linked to “inevitable loss.” As people reach an older age, they may become frail, experience financial or social disruptions, and, as a result, have to leave their homes to live with family or, in some cases, with strangers in an assisted-care facility. This interpretation, however, would miss the complexities that surround a person’s real-life experiences, and her or his role in managing that experience. The following case will serve as illustration. Case Study 2: Zio Vincenzo –– Arrangiarsi, Transforming a “Home” into a Home Zio Vincenzo died quietly just a few years ago at the age of 90. He spent the last few months of his life in a retirement facility. In our view, this period in his life is best understood in terms of the Italian concept of arrangiarsi.4 At a general level, as mentioned earlier, arrangiarsi refers to how people attempt “to make do” or “get by” in specific circumstances. The concept, however, carries the implication that people are active and deliberate in the process of adjusting or adapting to particular situations. To suggest that someone is capable of arrangiarsi in specific circumstances is to indicate that she or he is resourceful, innovative, clever, and adept at improvisation. We have heard many Italian immigrants speak with pride of how they managed to adapt to a new sociocultural environment, sometimes under difficult conditions, to succeed in making a life for themselves and their children in Canada (see also Perin, 1989; Perin & Sturino, 1989; Iacovetta, 1992). Zio Vincenzo was born in Sicily in 1912 and immigrated to Canada in the 74

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early 1950s. In contrast to many Italian immigrants of the period, Zio Vincenzo established himself in Canada as a prominent photographer. He located his studio in the heart of one of the Italian communities within a large urban centre. Soon his photographs began to appear in the homes of friends, family, and various community members. As his reputation grew, Zio Vincenzo began to provide his services to people outside of his immediate Italian community. In his later years, Zio Vincenzo experienced health problems. He suffered a stroke that made it difficult to continue his work in photography, but he retained the studio and spent much of his time at that location. He particularly enjoyed the fact that he could see people walking by, and that friends and paesani (individuals from his home town) would stop to chat. Zio Vincenzo also enjoyed visiting the local caffè bar and club. As his health deteriorated, though, it became more and more difficult for Zio Vincenzo to maintain his own home. With the help of his son, he moved into a care facility. Zio Vincenzo, however, left the residence in less than a week’s time. The facility was located a great distance from his studio, and he could not bear to live so far from his friends and neighbourhood. A short time later, Zio Vincenzo entered a newly constructed care facility within walking distance of his studio. Initially, he walked back and forth to the studio with the help of a walker. Later, he relied on his son and paesani to transport him to the old neighbourhood. As his son said, “I often drove my father to his previous living area to have an espresso, to enjoy his old surroundings, and see his friends. These occasions made him extremely happy.” The care facility, however, was not quite right. To improve his situation, Zio Vincenzo worked with his son and staff at the facility to transform the “home” into something that resembled his own home/studio. Zio Vincenzo had his son hang some of his cherished, framed photographs both in his room and in other areas of the care facility. He arranged to be moved from his assigned room to a room closer to the front entrance, so he could see people moving about outside. Zio Vincenzo also took great pleasure in discovering that one staff member was of Sicilian background, and took advantage of this situation to converse in his native language as often as possible. In addition, his son brought some of his photographic equipment to the facility, so that Zio Vincenzo could photograph the residents and activities at the home. Unfortunately, his health problems prevented him from following through on this photographic activity. In a matter of months, Zio Vincenzo was unable to move about on his own. He no longer visited the old neighbourhood, and few people, besides his son and daughter, came to visit. “This condition,” according to his son, “depressed 75

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him significantly.” Each day, however, the staff would help place him near the entrance to the facility –– in part to be in a position to keep an eye on him, and in part to satisfy his wish to be located in a place where there was movement and activity. This is how he spent his final days. Then one day, as recounted by a friend, “Clio [the muse of history in Greek mythology], not Death, came and took Vincenzo by the hand, together walking into history.” In the last few months of life, then, Zio Vincenzo experienced failing health, a change of residence, an inability to carry out an activity he loved dearly, fewer and fewer visits with old friends, and a severe case of depression. There is no denying that he experienced major and multiple losses during this period. Yet, right up to the final weeks of life, he engaged in a process of arrangarsi, finding clever ways to adapt or transform his surroundings and activities into something that better fit his notions of home and a buona vecchiaia. Religion A large majority of Italian Canadians, particularly among the immigrant generation, are Roman Catholics (at least nominally). For some individuals, religion is an important and ever-present aspect of life, while, for others, it is not something central in their everyday life experience. Certain participants in our study, such as Zia Rosina, made passing references to God, the Madonna, or one of the saints in their discussions of a buona vecchiaia. In this section, however, we will concentrate on a group of women, mostly 65 or older, who participate in a weekly prayer group –– the Gruppo di Preghiera. These women consider the prayer group to be an important source of both spiritual and social support. Case Study 3: Gruppo di Preghiera –– An Ethic of Well-Being Many years ago, in southern Ontario, the Sisters of the Nursery School of Mother Mary organized a prayer group for Italian immigrant women. The group eventually disbanded, but some of the women continued to meet occasionally in private homes to pray and say the rosary. The current Gruppo di Preghiera was formed in 1988, when Zia Rita began to hold the prayer meetings at her home. Today, the group consists of approximately 35 women (some in their mid- to late 80s). The meetings take place every Tuesday afternoon in Zia Rita’s basement recreation room, where she has a large statue of the Madonna, as well as many photos, paintings, and statuettes of various religious figures. The group is devoted to the Blessed Virgin Mary. According to Brenda, the daughter of one of the original group members (who has since died):

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I used to take my mother there. [She] told me that ... the Sisters started this prayer group. They all said the rosary together, and then they had coffee and cake –– more of a get together, as well as a prayer group. And, to give . . . elderly women who looked after their husbands and families a time-out for themselves.... Then the Sisters got really busy ... and [Zia Rita] decided to have it at her place in the afternoon. And that gave them a time to be together and just enjoy ... what they liked to do, like saying the rosary, enjoying the old hymns ... and songs that they used to sing in their various regions of Italy. They just enjoyed the afternoon with Rita. And, they looked forward to it. Every Tuesday my mother went, and she looked forward to it. Nothing came in her way to miss this little outing.... That was number one priority for Tuesday afternoons.

Although group members devote much of their time to prayer, they also engage in social activities. The Tuesday sessions provide participants with an opportunity to socialize, obtain news about one another and their respective families, support each other in times of need, and work together to accomplish common goals. In 2003, for example, group members contributed funds to prepare an altar cloth for donation to a particular church in Italy. Participants look forward to attending the prayer sessions, in part because they enjoy each other’s company. At the same time, however, these sessions give them the opportunity to address their own spiritual needs and to provide a service for others. Zia Catarina, a group member in her late 60s, participates in the prayer sessions for the following reasons: I go because it is good for the soul. You feel lighter when you come out.... We pray together ... and we became friends.... I say the prayers for myself, for my whole family.... We pray for our people that passed away, for the people that are sick and in the hospital, for the people who are separated, for the people who need prayer but don’t pray, we say the prayers for them.

Zia Rita also addressed these issues: We pray for all the people that have a great need for our prayers. In reality, many people don’t have faith, but prayer gives strength. And, with prayer, we can move ahead. It gives us help to increase our faith, and to be more Christian.... Prayer is even stronger than medicine. Praying for those that are sick, if one prays with true faith, can sometimes surprise doctors. True miracles can happen. Sometimes medicine does not make as much progress as does prayer.... At the moment, we are praying for [a group member’s] son [who is gravely ill with cancer]. We pray that he will be saved.... I, myself, am saying a novena to Santa Rita.... 77

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So, it is very important to pray, to have a great deal of faith ... in God. One must never feel discouraged, because with discouragement comes many bad things.... Without faith, without prayer, we are finished. There is nothing. The world is in ruin. So we pray a great deal for the world, for all these wars, for all these drugs.... We are children of God, and God wants us to always be faithful, and with faith we will arrive closer to him.... We might forget about God, but God does not forget us.

Zia Catarina and Zia Rita believe that prayer is important for both physical and spiritual well-being. Through prayer, they express their faith, seek spiritual assistance for themselves, and ask God, sometimes through the intercession of the Madonna or one of the saints, to assist those in physical and spiritual need. In a sense, they are providing a service to their immediate families, their community, and others around the world. Providing this service allows them to maintain a positive self-image. They may be in their senior years, but there is power in prayer; they can still accomplish a great deal for others. The Gruppo di Preghiera, then, serves many purposes. We suggest that, at least in some respects, it constitutes a therapeutic landscape. According to Gesler (1996: 96), the concept of a therapeutic landscape refers to how the “physical and built environments, social conditions, and human perceptions combine to produce an atmosphere which is conducive to healing.” In more recent years, this concept has been modified, and re-modified, to include a discussion of the role of both physical and figurative space in various aspects of health and well-being (see Gastaldo, Andrews & Khanlou, 2004). Group sessions take place in a physical location, Zia Rita’s basement recreation room, where there are numerous cultural and religious symbols, and where people engage the spiritual through prayer. At the same time, however, the group itself serves as a figurative space from which people can interact with one another, pray for their loved ones, maintain a link with those who have died, and provide a service to others. In our view, these women have constructed a Gruppo di Preghiera that helps to promote, and provide a vehicle for the expression of, a sense of well-being among participants. They have accomplished this, in part, by cultivating a sense of belonging among group members, and by providing each other with a space or place that stimulates the types of social and spiritual interactions that they associate with a buona vecchiaia.5

Conclusion Aging can and does coincide with frailty, sickness, and eventually death. In addition, over time, older adults may experience various forms of social and cultural loss. We do not dispute that these processes occur in people’s lives, nor do we dispute that they are important concerns among Italian Canadians. 78

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Following Stephenson (Chapter One) and von Faber and van der Geest (Chapter Two), however, we suggest that these types of physical and sociocultural losses can, and do, occur at any age. A focus on “loss” provides a very narrow and negative view of aging and its relationship to quality-of-life issues. More specifically, it fails to address the subtle nuances and complexities surrounding people’s everyday life experiences, and their subjective understanding of these experiences. One of the dangers of discussing aging in terms of “inevitable loss” is that it generates an image of older adults as only victims who are passively affected by forces beyond their control. As we have shown, individuals such as Zia Rosina and Zio Vincenzo have experienced a series of ups and downs at various points in their lives, but both have attempted, sometimes successfully, to manage these and to adapt to the situations they find themselves in. Italian Canadians (and others, like the Dutch and Namaqualand elders of the previous two chapters) are active participants in the aging process and, in many respects, are prepared to take steps in an attempt to improve their circumstances –– physically, mentally, socially, and spiritually. Although “loss” certainly occurs in life, people can also experience feelings of joy, happiness, pride, or simply a degree of satisfaction in what they have accomplished, at virtually any age. We believe that the dialectic nature of the relationships among “loss,” agency, and satisfaction deserve greater attention in the gerontology literature and that a good way to begin is to actually listen to what our elders tell us rather than putting words in their mouths to rationalize our treatment of them. Furthermore, the precise meaning of an “old age” may vary from person to person, but Italian Canadians also tend to distinguish between a “good old age” (buona vecchiaia) and a “bad old age” (mala vecchiaia). A variety of factors, in turn, can affect whether a person experiences her or his vecchiaia as buona or mala. These factors, among others, include the state of one’s health, family relations and social support, place of residence, financial security, and religion. Understanding some of the meanings people associate with a buona vecchiaia is the first step toward developing health and social policies aimed at improving the situation of elderly Italian Canadians. Based on our preliminary findings, we also suggest the following. First, it must be recognized that older adults often see themselves as valuable family members who have provided, and continue to provide, important services to others. These individuals must be given not only the opportunity, but also the space and means, to continue to participate in various personal and social activities that cultivate this positive self-image. Second, because there is variability among Italian Canadians in terms of both experience and circumstance, it is essential to listen to what specific individuals 79

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(and their families) have to say about their personal experiences of la vecchiaia. We also need to hear our own stereotypes, recognizing them for what they are. At one time, it was considered the duty of adult children (particularly female offspring) to care for aging parents in Italy. Although attitudes and expectations may change over time, the results of a 1999 Eurobarometer survey still show that “only 2 percent of Italians think elderly parents should be cared for in a retirement home” (see Krause, 2005: 56, n. 5). A similar study has not been conducted among Italian Canadians. Zia Linda’s suggestion that she would rather “go to heaven” than enter a “home” seems to be consistent with the results of the Italian survey. The stereotype of the Italian family as a cohesive unit that “takes care of its own,” however, is untenable in the Canadian context. More and more older adults acknowledge that it would be a burden for their children to take on this responsibility, and so they are taking action to remain in their own homes, move into an assisted-living or care facility, or arrive at an alternative solution that they and their children find acceptable. As part of this discussion, we would like to emphasize the dynamic nature of the meanings people attach to central concepts such as “loss,” “old age,” and la buona vecchiaia. A concluding statement made by Gloria, a 63-year-old study participant/nurse/caregiver, mother and grandmother, identifies changing ideas she has witnessed first hand throughout her lifetime. Gloria spent several years looking after a parent, as did her mother. Now her 90-year-old mother resides in her brother’s basement suite with a 24-hour live-in female caregiver from a developing country. Gloria picks her up every Sunday and brings her to her home, located in a city some distance from her mother’s residence. Gloria says, I think [Italian Canadians] are becoming more aware of the need for ... senior residences, because ... in most families, two people have to work in order to keep up house payments . . . raise family . . . and I think maybe they’re realizing that their kids can’t look after them totally.... They will be there for them, as any good child should be, but they can’t take on the burden of having them with them ... like our parents did.... Like my mom was a block away from my grandparents, and was there all the time for them –– back and forth, back and forth, back and forth. And, yes, I carried the tradition by looking after my father-in-law [who lived with her and her family for 7 years], but I think we’ve come around so that maybe even the elderly Italians now know that they can’t really depend on their kids to totally look after them. I think [some other ethnic groups] are doing it. Like it’s what is expected of them, but I don’t think that’s so much true of Italians any more. And the way our lives are, Italian people are realizing that: I don’t really want to live with my kids. I’d rather be somewhere else as long as I can be. 80

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Finally, it is necessary to find ways to support individuals in their decisions to remain at home, live with family members, or enter a facility. In the case of care facilities, there is a need for residences that either cater to Italian Canadians, or provide programs that assist people in the process of transforming the “home” into a home.

Acknowledgements The research for this study was made possible through both a Social Science and Humanities Research Council of Canada operating grant, and additional funding from Kwantlen Polytechnic University. We also wish to thank Calogero Milazzo, Natasha Damiano, and Adam Hicks for their assistance at various stages of the research project, as well as the many individuals who participated in the study.

Notes 1. To protect the identities of study participants, we make use of pseudonyms to refer to specific individuals and, in places, we have changed some of the details people described to us. 2. Recently, a special issue titled “Older People” appeared in the journal Illness, Crisis, & Loss (see Thompson, 2004; Holman & Meyer, 2004). 3. These tensions and feelings have been played out, in highly exaggerated form, in some of the early episodes of the popular HBO television series The Sopranos. Tony Soprano places his mother in an expensive care facility when she begins to experience problems taking care of her own needs. In the process, he experiences feelings of anger, guilt, and shame due, in part, to the reactions of his mother and other friends and family members. 4. Although the concept of arrangiarsi is prevalent throughout Italy, it is particularly salient among Sicilians. In fact, the notion is imbedded in various Sicilian folktales and stories. One of these stories touches on the long history of foreign invasion, conquest, and exploitation that has taken place on the island. In the story, the leader of a conquering horde is not satisfied to take control of the island; he insists on abusing and humiliating the “Sicilians.” To accomplish this, he has his people prepare an enormous pot of pasta, then sit two Sicilian peasants across from one another with the pot between them. The peasants are given huge forks to eat the pasta, with the instruction that they must hold the fork from the handle or risk death. With such large forks it is impossible for a person to hold the item by the handle and still reach one’s mouth to eat the pasta. The Sicilian peasants, however, are quick to adapt to the situation. Rather than attempt to bring the pasta to their 81

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own mouths, they move the forks across the pot to feed each other. Although the conquerors were able to take over the island, the Sicilian peasants did not starve, and they were able to retain their pride. 5. For a discussion of other group activities that have an impact on the physical and/or mental well-being of Italians, see Miklavcic (2006) and Whitaker (2005).

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Gastaldo, D., Andrews, G.J., and Khanlou, N. 2004. “Therapeutic Landscapes of the Mind: theorizing some intersections between health geography, health promotion and immigration studies.” Critical Public Health 14 (2): 157–76. Gesler, W.M. 1996. “Lourdes: healing a place of pilgrimage.” Health and Place 2: 95–105. Goodpaster, B.H., Park, S.W., Harris, T.B., Kritchevsky, S.B., Nevitt, M., Schwartz, A.V., Simonsick, E.M., Tylavsky, F.A., Visser, M., and Newman, A.B. 2006. “The Loss of Skeletal Muscle Strength, Mass, and Quality in Older Adults: the health, aging and body composition study.” Journals of Gerontology, Series A: Biological Sciences and Medical Sciences 61A (10): 1059–64. Harney, N. DeM. 1998. Eh, paesan! Being Italian in Toronto. Toronto: University of Toronto Press. Hazan, H. 2002. “The Home over the Hill: towards a modern cosmology of institutionalization.” Journal of Aging Studies 16 (4): 323–44. Holman, C., and Meyer, J. 2004. “The Complexity of Loss in Continuing Care Institutions for Older People: a review of the literature.” Special issue: Older People. Illness, Crisis & Loss 12 (1): 38–51. Iacovetta, F. 1992. Such Hardworking People: Italian immigrants in postwar Toronto. Montreal and Kingston: McGill-Queen’s University Press. Jones, D.J. 1970. “Towards a Native Anthropology.” Human Organization 29: 251–59. Krause, E.L. 2005. A Crisis of Births: population politics and family-making in Italy. Belmont, CA: Wadsworth/Thomson Learning. Lock, M. 1993. Encounters with Aging: mythologies of menopause in Japan and North America. Berkeley: University of California Press. Migliore, S. 2001. “From Illness Narratives to Social Commentary: a Pirandellian approach to ‘nerves.’” Medical Anthropology Quarterly 15 (1): 100–25. Migliore, S. 1997. Mal’uocchiu: ambiguity, evil eye, and the language of distress. Toronto: University of Toronto Press. Migliore, S. 1993. “‘Nerves’: the role of metaphor in the cultural framing of experience.” Journal of Contemporary Ethnography 22: 331–60. Migliore, S. 1983. “Evil Eye or Delusions: on the ‘consistency’ of folk models.” Medical Anthropology Quarterly 14 (2): 4–9. Migliore, S., and DiPierro, A.E. (Eds.). 1999. Italian Lives, Cape Breton Memories. Sydney, NS: University College of Cape Breton Press. Miklavcic, A. 2006. “Border Games: card playing among the elderly in the Julian region.” Semiotica 160 (1/4): 265–77. Milligan, C, Gatrell, A., and Bingley, A. 2004. “‘Cultivating Health’: therapeutic landscapes and older people in northern England.” Social Science & Medicine 58: 1781–93. Neuropathology Group of the Medical Research Council Cognitive Function and Ageing Study (MRC CFAS). 2001. “Pathological Correlates of Late-onset Dementia 83

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in a Multicentre, Community-based Population in England and Wales.” Lancet 357 (9251): 169–75. Nichter, M. 1981. “Idioms of Distress: alternatives in the expression of psycho-social distress: a case study from South India.” Culture, Medicine and Psychiatry 5: 379–408. Parsons, C.D.F. 1984. “Idioms of Distress: kinship and sickness among the people of the kingdom of Tonga.” Culture, Medicine and Psychiatry 8: 71–93. Parsons, C.D.F., and Wakeley, P. 1991. “Idioms of Distress: somatic responses to distress in everyday life.” Culture, Medicine and Psychiatry 15: 111–32. Perin, R. 1989. “Introduction: the immigrant –– actor or outcast.” Pp. 9–35 in R. Perin and F. Sturino (Eds.), Arrangiarsi: the Italian immigration experience in Canada. Montreal: Guernica. Perin, R., and Sturino, F. (Eds.). 1989. Arrangiarsi: the Italian immigration experience in Canada. Montreal: Guernica. Robert, L. 2006. “An Original Approach to Aging: an appreciation of Fritz Verzár’s contribution in the light of the last 50 years of gerontological facts and thinking.” Gerontology 52 (5): 268–74. Ryang, S. 1997. “Native Anthropology and Other Problems.” Dialectical Anthropology 22: 23–49. Simms, M. 2004. “A Theory of Age Exclusion through Closure: ‘Chronological age’ to ‘clinical need.’” Journal of Aging Studies 18: 445–65. Somel, M., Khaitovich, P., Bahn, S., Pääbo, S., and Lachmann, M. 2006. “Gene Expression Becomes Heterogeneous with Age.” Current Biology 16 (10): R359–R360. Stephenson, P.H. 2009. “Lessons from Abroad: aging, agency and intentional communities.” Pp. 101–118 (Chapter 5) in D. Cloutier-Fisher, L. Foster, and D. Hultsch (Eds.), Health and Aging in British Columbia: vulnerability and resilience. Victoria, BC: Western Geographical Press. Thompson, N. 2004. “Introduction.” Special issue: Older People. Illness, Crisis & Loss 12 (1): 5–9. Tomaka, J., Thompson, S., and Palacios, R. 2006. “The Relation of Social Isolation, Loneliness, and Social Support to Disease Outcomes among the Elderly.” Journal of Aging and Health 18 (3): 359–84. Whitaker, E.D. 2005. “The Bicycle Makes the Eyes Smile: exercise, aging, and psychophysical well-being in older Italian cyclists.” Medical Anthropology 24: 1–43.

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CHAPTER FIVE

Drunks, Bums, and Deadbeats? A Biographical Perspective on Gender, Aging, and the Inequalities of Men

Cherry Russell

Disadvantage in old age has been conceptualized as predominantly a “women’s issue,” and older women have been the subject of much scholarly attention over several decades. This preoccupation reflects the fact that “old age is a territory more travelled by women” (Markson, 1983: 2) and that women are accordingly more exposed than men to risks of poverty, widowhood and institutionalization at the end of their lives. Within this “competitive suffering” approach to the gendering of late-life inequality (Russell, 2007), older women are constructed as “among the most powerless of persons, vulnerable to all the indignities of age, poor health, the lower social status accorded females, and uselessness” (Hess & Waring, 1983: 227). When older men are considered, emphasis is placed on the “relative comfort” (Thompson, 1994) of their lives in comparison to the disadvantages faced by older women. This construction of late life well-being in terms of disadvantaged older women with special needs, and contented or dead older men with no needs either way, has achieved considerable rhetorical power. Within the overarching paradigm of aging as loss and decline, it suggests that women are the “biggest losers.” But this discourse obscures clear evidence that many older women are highly 87

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resilient, while some older men lead impoverished and insecure lives. It fails to address important sociological questions about economic and social inequalities among older women and older men, and not simply between them. Recently a small but growing body of research has begun to challenge “the idealized view of older men as a privileged gerontocracy” (Applegate, 1997: 4). Thompson (1994) and others have criticized the “invisibility” of older men in social research. Calls emerged for the sociology of aging to be fully rather than partially gendered, and for an explicit focus on the category of older men (Hearn, 1995). Studies of older men whose lives have not followed the conventional pathway of middle-class career, marriage, and leisured retirement (Russell et al., 2001) have begun to yield valuable insights into inequalities among older men themselves, showing that in both the developed and developing world, late-life vulnerability is not unique to women (Arber, Davidson & Ginn, 2003). Of particular importance are differences in class and partnership status. Low-income, single men living in publicly funded or rental housing are among the most disadvantaged and vulnerable segments of the older population. Being male, on a low income, and never or previously married, and living alone and in insecure housing are factors associated with an elevated risk of poor physical and mental health outcomes in later life, including premature mortality (Mathers, 1994). Studies of such high-risk groups of older men, notably those living in single rooms or on the streets of inner urban areas, have consistently documented high levels of serious illness and disability, including psychiatric disorders and alcohol problems (Russell et al., 2001). Beyond broad-brush, snapshot statistics, however, we know remarkably little about how and why some men fail so spectacularly in the “successful aging” stakes.

The Social Identities of Single Older Men There are two main ways in which the social identities of single older men have been constructed. The first of these occurs in mainstream gerontological and policy literature. This is the figure of the somewhat pathetic and powerless widower, whose deficiencies reflect his lack of social and domestic skills and whose needs are accordingly addressed through the provision of delivered meals and housekeeping services. Life-long single status, other than through widowhood, has been attributed in the gerontological literature to a variety of factors. In characterizing the causes of “failure to partner” among older Australians, for instance, Rowland (1998) refers to the never-married person, as containing “an over representation of high achieving women and low achieving men” (26). Others (e.g., Gubrium, cited in Rubinstein, 1987) have proposed that the never-married elderly may represent a special “social type” 88

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of life-long isolates. Sexual orientation has occasionally been raised as a possible contributing factor (e.g., Braito & Anderson, 1983). For the most part, however, the image of the poor, unpartnered older man has been constructed in the research and policy literature concerned with “deviant” minorities. This is the image of the street-dwelling derelict, whose undesirable presence in city parks and doorways elicits community disgust and rejection. In the limited Australian literature about impoverished innercity men, a range of attributions is typically made about elements of their personal identities. They are portrayed as socially incompetent, lacking in confidence and self-esteem, passive and withdrawn, and unable to act as agents for change: with little ability to manage in the wider world, they are found by agencies of society to be “fit subjects for evangelism, punishment, therapy and social rehabilitation” (Jordan, 1994). As Blasi (1990: 212) has argued, the single unemployed male is generally located at the bottom of society’s “hierarchies of scorn” toward the poor. Historically, the figure of the dishevelled older man sleeping off an alcoholic “bender” on a park bench has been virtually synonymous with the phenomenon of homelessness and with the social identity of the single men who constitute the majority of homeless persons. In the research literature, as Snow and Anderson (1993: 1336–37) have remarked of homeless persons in general: However they come to be situated at the lowest reaches of a status system ... they tend to be viewed and discussed primarily in terms of the characterological problems they are thought to have (e.g., cultural deprivation, genetic inferiority, and mental depravity), the problems they are thought to pose for the larger community (e.g., crime, contamination, demoralization, and welfare), or the problems associated with their material survival (e.g., food, shelter, and clothing).

In other words, while the disadvantages faced by some women in later life are attributed to gendered structures of inequality, an “individual deficit” model largely underpins explanations for their “underachieving” male counterparts. Why should it be that aging as a gendered experience reflects the differential structuring of access to valued resources and a set of culturally derived meanings and expectations only for women? One of the major impediments to better understanding the gendering of disadvantage over the life course is the paucity of studies that have adopted a dynamic or longitudinal perspective. Such a perspective requires simultaneous attention to the biographical detail of individual lives and to the wider historical and social context within which they are located.

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The Ageing Men’s Health Project The Ageing Men’s Health Project was a three-year ethnographic investigation of the health, housing, and service use of low-income, non-married, non-homeowning men aged 50 or older living alone in inner-city Sydney, Australia. One aim of the project was to elucidate the life pathways through which a minority of men enter old age with multiple financial, social, and health vulnerabilities. The study site was the Local Government Area of South Sydney, a cluster of suburbs on the fringe of the Sydney CBD (Central Business District) that contains a substantial concentration of men in the target group. Despite increasing gentrification, parts of the area retain their historical association with poverty characteristic of the inner areas of large cities everywhere. It affords a range of habitats for low-income single persons, including private rental accommodation in lodging houses, and cheap hotels, public housing, agedcare facilities, and homeless shelters. Data collection involved some 1,200 hours of participant observation and in-depth life-history interviews with 67 men aged 50–89 years (average 67.6 years). The interviews were semi-structured, using open-ended questioning around the broad topic areas of work, health, housing, family and social networks, and use of supportive services. Where permission was given, interviews were tape-recorded and transcribed. Case summaries organized as “plot lines” around key life transitions were developed for each interview. These were searched for similarities and differences. A number of striking commonalities emerged across the sample as a whole. Some differences, corresponding to age-cohort location, were also apparent. The life histories of the oldest-old cohort, for instance, shared common biographical elements such as experiencing the Great Depression and World War II as an adult (with many on active service), while the youngest included some Vietnam War veterans and those on Disability Support pensions because of a psychiatric illness. In this discussion, data from the entire sample will be presented, but the interpretive focus is on the middle cohort of men. Comparative analysis across this cohort revealed five dominant storylines. In the presentation that follows, an exemplar case is contextualized in relation to overall patterns and themes in the data. As Somers and Gibson have argued, [one] challenge of conceptual narrativity is to develop a vocabulary that will allow us to locate actors’ social narratives in temporal and spatial configurations of relationships and cultural practices (institutions and discourses). We need concepts that will enable us to plot over time and space the ontological narratives of historical actors, the public and cultural narratives that inform their lives, as well as the relevant range of other social forces –– from politics to demographics –– that configure together to shape history and social action. (1994: 69) 90

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Such analysis begins with recognizing that gender does not “act alone” as a structural and cultural determinant of inequality. Survey data on patterns of late-life disadvantage show a complex association among gender, class and partnership status (Arber 2004). My discussion contextualizes the men’s stories in relation to the key “variables” of class and marital status. These accounts begin to reveal a complex set of interactions between the two and the interrelationship of both with the men’s housing histories. However if we are to understand the mechanisms that link these structures to the biographical detail of individual lives, other concepts are required. Central to understanding how class and marital status actually “play out” in the lives of men is a focus on what Hagestad refers to as a “meso” level of primary groups –– communities, work organisations, friendship groups and families. It is at this intermediate group level, she proposes, “where we may find linkages between society and individual, history and biography ... since it is these environments that give specific meaning to new conditions” (1990: 162). Finally, I attend to those elements of the larger matrix of relations –– what Somers and Gibson (1994: 69–70) refer to as the “relational setting” or “pattern of relationships among institutions, public narratives, and social practices” that shape individual lives. Class Across the sample as a whole, it was clear that a shared location in the class structure was not merely characteristic of the men’s present circumstances. The vast majority were born into working-class families, and four in five had themselves been employed in unskilled or semi-skilled blue-collar occupations. Most had been engaged in jobs that were transient, seasonal or otherwise discontinuous, and reported that the termination of their working lives had not been by choice; at least one in five had, like Lance (all names are pseudonyms), been made redundant. Lance also shared his failure to purchase a home with three-quarters of the participants: a history of moving through a succession of employer-provided accommodation and low-rent rooms was a common pattern. While only a dozen men were lodgers at the time of interview, more than half (35) reported having lived in privately rented single rooms at some point in their lives. As other research (e.g. Jordan, 1994; Snow & Anderson, 1993) has shown, such housing histories are characteristic of a particular lifestyle followed by certain men in most of the Western world which, in the literature, has come to be referred to as a “continuum of homelessness.” Geographic and employment stability represented a minority experience in the sample. While nearly half the men had been born in metropolitan Australia, only a few had actually been raised in the inner city of Sydney, or 91

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reported long-term continuous employment in one job. Jerome was one of the exceptions. In other ways, his story is similar to the other men’s: leaving school at or before the minimum age to enter employment, and moving out of the family home as a teenager was a typical scenario. Like Jerome, one third of the men reported illness or injury as the reason for stopping work. An early introduction to alcohol, through a male family member or workmates, was also reported fairly often. In addition, Jerome’s reluctance to move away from the inner city was characteristic and not confined to the minority born there (Russell, 2005). Like Toby, a significant number of men had spent all or most of their working lives in some form of “masculine occupational community” such as the armed services or those that formed around mining, shipping, rail transport, on the wharves, and in most forms of agriculture and pastoral work (Connell et al., 1998). As other men’s accounts made clear, such employment entailed more than the means for livelihood; it embodied a way of life with material, social, and cultural implications beyond merely the earning of a wage, simultaneously providing shelter, domesticity, and affiliation. Heavy consumption of alcohol, often in the form of post-work “binges,” was a central expression of such a male lifeworld, as it was more generally for men within Australian (especially working-class) culture. One in five men reported that they regularly consumed large amounts of alcohol. A number of others, though they were not currently drinkers, reported histories of heavy drinking. Case Study 1: Lance Lance was born in the United Kingdom in 1930. He came to Australia as an assisted migrant when he was 18 (“’47 was a bad time for living in London”), initially living in Brisbane with the aunt who had sponsored him here and working as a painter and decorator. After two years his aunt died and then he “travelled around a bit” to other cities and states. During this time he had different jobs, “a couple of factory jobs, mainly painting. There was a fair amount of work around at that time.” He even tried cutting [sugar] cane for a while: “In those days you had to cut cane with your hands, no machinery. Now it’s all been replaced with machinery. It was very good, I enjoyed that. It didn’t last long though.” Overall he explained how he had “worked solid” all his life: “I always found a job in those days, there was miles of work in the country. The country was screaming out for men in the bush. They had miles and miles of money in the bush in those days, not like today”). While he was working he lived “any place at all,” including staying with friends, in boarding houses and hotels (“I stayed in some weird places, stayed in a few filthy places”). In 1990, at age 60, he was “cut off ” (i.e., made redundant) and started receiving unem92

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ployment benefits. He explained how he went about “looking for work” to satisfy the eligibility criteria for unemployment benefit: “I used to just look up the phone book and write anything on the unemployment form. Who’s going to give a man of my age a job anyway? It was a stack of lies. I couldn’t get a job at 60.” He lived in private rental and put his name on the waiting list for public housing. After six years he was offered his current bedsit (one-room) unit in a high-rise block (“got myself a little room, little tomb, little cell. I suppose it’s what they think is suited to older people”). Case Study 2: Jerome Jerome is 60 years old and has never partnered (“haven’t found Mrs. Right yet”). He grew up in the area where he still lives and during the interview described the changes that have taken place as the locality has become gentrified. His account made particular mention of the ways in which his social world has changed: “Half the time up the top road there you don’t know anyone. It’s changed. I used to know a lot of people around here.” Jerome and his brother and sister were adopted by his stepfather and experienced “a very hard childhood” with little money. At 15 Jerome started work in a timber factory in the area, leaving home to live in a boarding house run by a school friend’s mother. He moved to a room in a private hotel for a time, and then to his current lodging-house room which he has occupied for more than a decade. He worked for the same firm for 24 years until “the place folded up,” and then found similar work elsewhere until illness forced him to “retire” in his 50s. He found not working “terrible” and has lost touch with former workmates (“I went a couple of times to meet them for lunch, but then they’d go back to work and I’d have to go home and it got depressing, you know”). He went on to a Disability Support pension and finds little to do with his days because the “pension doesn’t give you that much.” He is on the waiting list for public housing but wants to stay in the area: “I don’t want to move anywhere else.” He used to be “a very heavy drinker,” having been introduced to alcohol at age 8 by his stepfather (“I got drunk up at [the local park] with my old man, he was playing cricket”). He says that drinking was never really a problem in his life (“I used to get up and go to work”) but no longer drinks “because I’m not allowed to, the doctors go crook on me.” Case Study 3: Toby Seventy-year-old Toby was interviewed in his room in the aged-care facility where he has lived for the past two years. Toby spent his entire working life at sea, 14 years in the navy followed by a further 30 years in the merchant service: “I reckon,” he says, “I had the greatest job in the world.” Along the way he married 93

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and divorced twice and fathered 15 children “scattered all over Australia” from his marriages and “a few de facto relationships.” He has pictures on his wall of various ships and large photos of the children of his most recent marriage, two teenage girls, who visit him every month or two. He says he’s “pretty much lost touch” with the rest of his family with the exception of his eldest son. Toby was recommended for placement in the aged-care facility by a hospital social worker. He had been living at an inner-city crisis hostel for 18 months before being hospitalized for surgery on his leg. However when he phoned the hostel to tell them he was being discharged, “they said no, they didn’t want me. I was a troublemaker so they refused to take me [back].” Although he didn’t say as much, it is likely his “troublemaking” may have had something to do with his drinking. As Toby explained, “I fall over occasionally but I’m so used to it now it doesn’t bother me and it’s usually after I’ve been drinking heavily anyway.” Every fortnight when he gets his pension he goes out to a club and gets “stuck into the Scotch.” Toby’s stay in crisis accommodation followed a period in which he had looked after his young daughters on his own. About seven years ago, he told us, “their mother walked out and left us” (it was not clear where they were living at this time) and Toby successfully applied for Department of Housing accommodation as a sole parent: “when we were living there I did everything myself. I did the cooking and everything else, took the children to school and picked them up in the afternoons and everything like that.” Eventually his wife was awarded custody and the children went to live with her. At the end of the interview Toby began to cry as he told anecdotes about his daughters’ accomplishments and talked about how proud he was of them. Marital Status Just under half of the men were never married, approximately one-third separated or divorced, and the remainder (fewer than one in five) were widowed. In comparison, for all Australian men aged 50 years and over, widowhood is the most frequent reason for being unpartnered in old age. Among the 32 per cent of older Australian men who are single, nearly half (43 per cent) are widowers, while 29 per cent have never married and 28 per cent are divorced or separated (ABS, 1999). The never married were not more likely to report having acquired an illness or disability early in life; indeed, none of the never married did so. Nor were never married men more likely to report a mental illness or drinking problem. Two never-married men identified as homosexual; one had been involved in two long-standing relationships (which had ended through separation and death, respectively), while the other did not report any close personal relationships other than with his mother (see Porter, Russell & Sullivan, 2004). 94

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The main way in which the never married differed from others was in relation to their housing histories. Of the one-quarter of men who at some stage had owned or been purchasing a home, almost all had partners and children at the time. Marital breakdown resulted in a change of housing circumstances for 17 of the divorced or separated (including de facto) men. The never married were also more likely to have remained living in the parental home into their twenties and thirties. Two never-married men, but no man who had ever had a partner, still lived with a parent in their forties. For most of the never-married men, however, marriage as a life option had simply been situationally unavailable to them because of the work they did. Some said they had not earned enough to support a family, while those engaged in “masculine occupational communities” identified both the irregularity of their incomes and the absence of opportunities to establish relationships with women. Divorce/separation was the second most common reason for being unpartnered. Of the divorced/separated men, five failed to elaborate on the marriage relationship, the reasons for its termination, or how they felt about their exwives. Of the 24 men who did offer an interpretation of the circumstances, the dominant storyline was one in which it had been the wife’s decision to leave. Many (though not all) expressed varying degrees of anger and bitterness and linked these feelings to different kinds of losses that they attributed to the breakup, notably the loss of money, housing, children, and emotional support. Edward was one of 13 interviewees who were widowed. In other respects Edward’s history is familiar: a pattern of unskilled, transient, and truncated work accompanied by housing mobility within and between various forms of low-cost accommodation, including lodging and boarding houses, cheap private hotels, job-related accommodation, and, in some cases, emergency shelters and “sleeping rough.” Overall, 40 participants reported having been in crisis accommodation at least once. While it might have been expected that excessive alcohol consumption would be strongly associated with the use of emergency shelters, this was not clearly the case. Reasons for transition to crisis accommodation (where information was known) were just as likely to include (as in Edward’s case) job loss, illness/injury or divorce/separation, sometimes (but not always) accompanied by excessive drinking. While Edward’s country origins placed him among a minority of the men (onequarter of the men were born in rural Australia), his pattern of recruitment into and affiliation with the inner-city subculture was a recurring theme across most of the participants’ accounts (Russell et al., 2001). As Braito and Anderson (1983: 196) have remarked, “For theory development and application, the need for investigating the implications of marital 95

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status, rather than controlling it, becomes important.” Marriage is the most significant factor associated with home ownership in Australia and the crucial mediating variable in housing stability (Baxter & McDonald, 2005). The likelihood of being married is in turn strongly related to occupation and income. The importance of housing in old age has been emphasized by many writers. Particularly in Australia, “home ownership serves to accumulate economic advantage early in life and to convert it into financial security in old age” (Kendig, 1984: 8). Older home owners are substantially better off financially than non-home owners. They spend, for instance, on average only 5 per cent of their income on housing (Giles, 1993) whereas private renters often pay 50 per cent and the fortunate few who access public housing pay 25 per cent (Wulff & Evans, 1998). Thus older non-home owning men are likely to be at high risk of poverty. Rates of home ownership among older Australians are high, with approximately 70 per cent of Australians aged 65 years and over owning their own homes. Among the men in the study, by contrast, home ownership at any time during their lives was infrequent. Only one quarter had at some stage owned or been purchasing a home. By the time they had reached their 40s, fewer than one in five were owners or buyers, and only one in eight were owners or buyers in their 50s. By contrast, more than half of all Australians aged in their mid-40s to mid-50s own homes outright and one third are purchasers, while at ages 65–74, nearly four out of five are outright owners (Kendig & Gardner, 1997). Among interviewees in this study, those who were home owners at any stage are more likely to have had partners and children at the time, and relinquishing home ownership was associated with the breakdown of the relationship. They subsequently went into private rental or crisis accommodation. Case Study 4: David David, aged 65, grew up in a country town as the youngest of nine children. His father was a vet who “worked for vegetables and things like that in them days” [i.e. during the Depression]. His father died when David was 21, and David moved to a regional city with his mother, having saved up to buy her a house by rearing potty calves. She died seven years later, David having meanwhile married. When he was 30 his wife left him for another man, taking their two young daughters (and all of the furniture) with her. Devastated by the loss of his family, David suffered an emotional breakdown and began drinking heavily. He sold the house he had shared with his wife (“I just wanted to run away”) and embarked on a transient lifestyle of casual jobs, living either in work-related accommodation or staying with relatives. Every job he took, he remarked, exposed him to drinking and drinkers (for instance stock-station 96

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work and managing a hotel). He ended up in Sydney where he remarried (both he and his second wife, he said, were alcoholics at the time) and acquired a stepdaughter. They were granted a Department of Housing flat but a family tragedy accelerated his wife’s drinking and she eventually left him. David remained in the flat but later applied for various transfers, finally settling in an inner-city high-rise block. In poor health, he stopped drinking some time ago with help from friends who were recovering alcoholics. He is very proud of his apartment and of the fact that despite his chronic alcoholism (which frequently led to blackouts) he had never slept rough: “I always had my bed and my nice little place.” Case Study 5: Edward Edward was born in 1931 in rural New South Wales where his family had a farm: “It wasn’t much, we didn’t have much.” One of four children, he recalls how during the Depression “times were tough but my Mum and Dad did well by us, always food on the table even if it was only bread and dripping.” He left school at 14, despite being “an intelligent boy –– top grades in all my subjects,” and became an electrical fitter. At 17 he moved to Sydney looking for “adventure,” leaving his two brothers working the farm following a work accident that left his father “pretty useless.” He moved into a boarding house and found a job at a factory, soon meeting and marrying (at 21) a “lovely” girl whose father owned the local bakery. They lived in a flat over the shop which her father used to rent out (“he gave it to us cheap, we didn’t have much money”). His wife was unable to have children and when Edward was in his late 30s (at this point in the story Edward started to cry) she became ill and died. “I’ll never forget her,” he said. “I knew I’d never marry again.” After that Edward went “back home” to the farm. His father had died, his brothers had married and “there wasn’t really anywhere for me to stay. I didn’t fit in anymore.” So he travelled, doing farm work, not wanting to come back to the city but ending up back in Sydney in the early 1980s. Here he found himself with nowhere to stay and no work. He was getting older and there were “lots of young blokes who could work harder than me.” His father-in-law had died and he didn’t know anyone –– “everything had changed.” He ended up sleeping in a park, was arrested and “thrown in the clink –– for nothing, I didn’t do anything. I’d been a hard worker all my life.” In jail he met other men who told him about places to stay, and he spent a few nights at one of the large night shelters (“bloody awful”). The social worker found him a kitchen job in a hospital (“it was only casual work but it was enough. I was getting on [he was in his early 50s] so I had to be happy with what I got”). He moved into a lodging house and continued working at the hospital for nine years, then “I retired –– 97

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getting old, arthritis, couldn’t get around like I used to.” Six years ago he moved to a room in a private hotel that was closer to the city: “At [suburb where lodging house was located] there’s nothing much around, nothing to do during the day.” He pays $140 a week for his room, which “doesn’t leave much when you’re on the pension” but had not applied for public housing, saying, “That’s not for blokes like me, that’s for families with young kids and women who lost their husbands in the war.” He has a cheap lunch every day at a dropin centre: “Get out of my room for a couple of hours. I’ve got lots of mates here, we have a yarn.” Market Forces and Gendered Public Policies Untangling the complex web of influences on the life pathways of disadvantaged older men requires attention to the role of the wider social, economic, and political context. This cohort of men entered the labour market during the postwar economic boom when jobs were plentiful and labour was in short supply, particularly in those industries that were heavily dependent on unskilled manual labour. In such a market their lack of education and training was no obstacle; on the contrary, as so many of them commented, there were plenty of jobs for the young, strong, and mobile. At the time, the cities that the men remained in or “cycled” through provided accommodation appropriate to their needs. In 1947, for instance, boarding and rooming houses accommodated more than a quarter of the inner-city suburban residents. However, this type of housing stock was beginning to dwindle, as postwar public policy sought to drive population growth and the development of a stable industrial workforce. The housing construction boom of the 1950s and 1960s was directed to providing family dwellings on the “quarter-acre block,” urban planning focussed on new suburbs, and financial policy was directed toward assisting young families with entering home ownership (Kendig & Gardner, 1997). Bank lending for home purchase required evidence of a stable income and actively discriminated against single persons. Programs designed to compensate certain groups for market failure, such as public-housing tenancy, were also geared to families. While public housing was also accessible to low-income single women, until 1984 single men on low incomes (of any age) were not eligible. This is reflected in the study sample in the fact that those men who had, like David, accessed public housing earlier in life had done so as part of a family unit. Indeed, some of the interviewees (like Edward) still believed that they were ineligible for public housing (“That’s not for blokes like me, that’s for families”). Women’s entitlement to welfare of this kind was, of course, underpinned by gendered assumptions and normative patriarchal family structures (male “breadwinners” and female 98

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“dependants”). Similar assumptions explain the establishment of differential ages of pension eligibility for men and women (65 and 60 respectively). For the men in this study, such policies contributed a further source of vulnerability.

Conclusion A biographical perspective illustrates how individual life transitions are embedded in, and need to be interpreted in relation to, their relationships to meso-level primary groups (notably those associated with work and family) and to particular historical formations and wider social processes of change. The latter include their intersection and interaction with market forces, particularly the employment and housing markets, and with gendered public policies and programs. The men’s biographical experiences can be seen to have been shaped within the class structure of Australian society and more specifically by the characteristics of the actual work they performed in particular locations and periods of history. The nature of the work in turn exposed men simultaneously to resources (such as on-site accommodation and meals and a ready-tohand social world of similarly situated men) and vulnerabilities (for instance, work-related injury, a masculine lifestyle, and culture of “mateship” based around heavy drinking) that offered few incentives or supports for securing a permanent home. Thus many of the men had entered middle age highly vulnerable to the effects of economic and social change. While the men who are the subjects of this research are very much a minority of the older Australian population, current trends suggest that future cohorts of older people are likely to include more like them: men who lack adequate income and housing wealth, are in poor health, and are effectively outside an informal system of caregiving. Birrell and Rapson (1998), for instance, have documented major declines in partnering rates among Australian men and women over the decade 1986 to 1996. For men aged under 40, the cause of declining partnering rates is more a product of “failure to partner” than marital breakup. Overall, the likelihood of being in a partnership is strongly related to occupational status and income, with those at the lower levels less likely to be partnered. Men who are not in full-time work are more likely to be unpartnered than other men. The authors conclude that the process of economic change over recent decades, particularly the deterioration of the male labour market, is primarily responsible for the lack of success of unemployed or under-employed men in the marriage market. Given that the most significant factor associated with home ownership is marriage (Baxter & McDonald, 2005), there are significant implications for policy development when such intense vulnerabilities occur among those who are most bereft of financial 99

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and informal social resources. In relation to key aspects of their life chances, some men more closely resemble their female, rather than (married) male, counterparts insofar as they “are found disproportionately among the poverty population, the homeless, the ill, and those in public institutions” (Hess & Waring, 1983: 227). One important consideration that flows from such findings is that the social world is arguably the primary mediator of “successful” responses to the challenges of being an older person. For both men and women, though in different ways, better understanding the causes and consequences of late-life vulnerability requires attention to structured social relationships and cultural meanings of class and gender. Such a perspective suggests that a political economy of well-being, rather than a paradigm of aging as biomedical loss, is the more fruitful model to guide research and policy.

Acknowledgement The research on which this paper is based was funded by the National Health & Medical Research Council of Australia.

References ABS (Australian Bureau of Statistics). 1999. Australian Social Trends 1999. Canberra: The Bureau. Applegate, J.S. 1997. “Theorizing Older Men.” Pp. 1–15 in J.I. Kosberg and L.W. Kaye (Eds.), Elderly Men: Social Problems and Professional Changes. New York: Springer. Arber, S. 2004. “Gender, Marital Status, and Ageing: linking material, health, and social resources.” Journal of Ageing Studies 18 (1): 91–108. Arber, S., Davidson, K., and Ginn, J. 2003. “Changing Approaches to Gender and Later Life.” Pp. 1–14 in S. Arber, K. Davidson, and J. Ginn (Eds.), Gender and Ageing: changing roles and relationships. Maidenhead: Open University Press. Baxter, J., and McDonald, P. 2005. “Why is the Rate of Home Ownership Falling in Australia?” AHURI Research & Policy Bulletin 52 (March). Melbourne: Australian Housing and Research Institute. Birrell, B., and Rapson, V. 1998. A Not So Perfect Match: The Growing Male/Female Divide 1986–1996. Centre for Population and Urban Research, Monash University. Blasi, G.L. 1990. “Social Policy and Social Science Research on Homelessness.” Journal of Social Issues 46 (4): 207–19. Braito, R., and Anderson, D. 1983. “The Ever-single Older Woman.” Pp. 195–225 in E. W. Markson (Ed.), Older Women: issues and prospects. Lexington, MA: Lexington Books. 100

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Connell, R.W., Schofield, T., Walker, L., Wood, J., Butland, D.L., Fisher, J., and Bowyer, J. 1998. Men’s Health: a research agenda and background report, submitted to the Commonwealth Department of Health and Aged Care. Canberra: Department of Health and Aged Care. Giles, P. 1993. “Ageing in Australia 1982–1992: a decade of action.” Australian Journal on Ageing 12 (1): 4–12. Hagestad, G.O. 1990. “Social Perspectives on the Life Course. Pp. 155–68 in R.H. Binstock and L.K. George (Eds.), Handbook of Aging and the Social Sciences. 4th ed. San Diego, CA: Academic Press. Hearn, J. 1995. “Imaging the Aging of Men.” Pp. 97–115 in M. Featherstone and A. Wernick (Eds.), Images of Aging: cultural representations of later life. London: Routledge. Hess, B.B., and Waring, J. 1983. “Family relationships of older women: A women’s issue.” Pp. 227–51 in E.W. Markson (Ed.), Older Women: issues and prospects. Lexington, MA: Lexington Books. Jordan, A. 1994. Going Bad: homeless men in an Australian city. Melbourne: Council to Homeless Persons. Kendig, H. 1984. “The Cumulation of Inequality: housing costs and income support in old age.” Australian Journal on Ageing 3 (1): 8–14. Kendig, H., and Gardner, L. 1997. “Unravelling Housing Policy for Older People.” Pp. 174–93 in A. Borowski, S. Encel, and E. Ozanne (Eds.), Ageing and Social Policy in Australia. Melbourne: Cambridge University Press. Markson, E.W. 1983. “Introduction.” Pp. 1–5 in E.W. Markson (Ed.), Older Women: Issues and Prospects. Lexington, MA: Lexington Books. Mathers, C. 1994. Health Differentials among Older Australians. Canberra: Australian Government Publishing Service. Porter, M., Russell, C., and Sullivan, G. 2004. “Gay, Old and Poor: service delivery to aging gay men in inner city Sydney, Australia.” Journal of Gay and Lesbian Social Services 16 (2), 43–57. Rowland, D.T. 1998. “Consequences of Childlessness in Later Life.” Australasian Journal on Ageing 17 (1): 24–28. Rubinstein, R.L. 1987. “Never Married Elderly as a Social Type: re-evaluating some images.” The Gerontologist 27 (1): 108–13. Russell, C. 2007. “Gender and the New Longevity.” Pp. 99–110 in A. Borowski, S. Encel, and E. Ozanne (Eds.), Longevity and Social Change: Australia in the 21st century. Sydney: UNSW Press. Russell, C. 2005. “Views of Home in Later Life: the perspectives of disadvantaged inner city men.” Pp. 237–49 in G.D. Rowles and H. Chaudhury (Eds.), Coming Home: international perspectives on place, time and identity in old age. New York: Springer. 101

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Russell, C., Touchard, D., Kendig, H., and Quine, S. 2001. “Foodways of Disadvantaged Men Growing Old in the Inner City: policy issues from ethnographic research.” Pp. 191–215 in S. Gauthier, D.N. Weisstub, and D.C. Thomasma (Eds.), Aging: culture, health, and social change. International Library of Ethics, Law, and the New Medicine, vol. 10. Dordrecht: Kluwer Academic Publishers. Snow, D.A., and Anderson, L. 1993. Down on Their Luck: a study of homeless street people. Berkeley: University of California Press. Somers, M.R., and Gibson, G.D. 1994. “Reclaiming the Epistemological ‘Other’: narrative and the social construction of identity.” Pp. 37–99 in C. Calhoun (Ed.), Social Theory and the Politics of Identity. Oxford: Blackwell. Thompson, E.H. 1994. “Older Men as Invisible Men in Contemporary Society.” Pp. 1–21 in E.H. Thompson (Ed.), Older Men’s Lives. Thousand Oaks, CA: Sage. Wulff, M., and Evans, S. 1998. “The spatial impacts of Commonwealth Rent Assistance on Australia’s low income households.” Paper presented at the Australian Population Association, 9th Conference, University of Queensland, Brisbane, Australia, Sept. 29–Oct. 2.

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CHAPTER SIX

Dignity and Loss: Implications for Seniors’ Health in Hospitalization Narratives

Christina Holmes and Peter H. Stephenson

Introduction How seniors experience hospitalization in many developed countries has become an area of concern for hospital staff and administrations, as well as for seniors, their families, and advocacy groups. Contemporary hospitals are usually very large, busy institutions with staffing problems that range from chronic shortages of cleaning and custodial staff, to generational change (large numbers of retiring nurses), to small numbers of overworked resident physicians. These forces can place any patient at risk of experiencing unmet treatment needs. However, if they are old and vulnerable and require additional time to heal as well as more intense treatment for multiple illnesses, the risk to patients increases. In an attempt to deal with this widely acknowledged and challenging problem, the “Elder Friendly Hospital Initiative” was created by regional health authorities in the province of British Columbia to gain information about the experiences of seniors undergoing acute care throughout southern Vancouver Island. The goal was to improve service to hospitalized seniors (Parke & Brand, 2004; Parke & Stevenson, 1999). The “Listening Project,” which we report on here, was framed as a qualitative study within the wider program of evaluation and differed from the rest of the initiative because it privileged the narrative voices of the elderly themselves, rather than 103

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those of health-care workers or families. The study was conducted in Greater Victoria, which among cities has the highest concentration of people over 65 in Canada. The Elder Friendly Hospital Initiative was conducted between 1999 and 2000 to ameliorate both physiological and psychosocial complications that elderly persons are widely known to experience during acute care (Creditor, 1993; Foreman, 1992; Hamilton & Lyon, 1995; Jacelon, 1999; Palmer, 1995; Tappen & Beckerman, 1993). Among the greatest health risks to seniors are surgery and hospital-acquired (nosocomial) infections (Duffy, 2002) especially common after surgery. The scenario of increased vulnerability to infection is also related to the central component of the paradigm of loss that is addressed throughout this book. This is because, in its most basic form, the discourse around aging and hospitalization implies that most people increasingly visit hospitals as they age, and that many, perhaps even most, will eventually live in institutional settings (a “nursing home” or “long-term care facility”) receiving custodial health care. This transition between increasing levels of care is framed by a discourse of increasing loss, with a greater probability of death at every step along an inevitable path of declining health. Much evidence actually supports a very different sequence in which many seniors remain in their own homes but are at dramatically increased risk if they enter hospitals, where the main causes of death are from so-called complications associated with infection, unnecessary treatments including high-risk surgeries, medication errors including adverse drug reactions, and even malnutrition (Aminzadeh & Dalziel, 2002; Canadian Institute of Health Information, 2000; Creditor, 1993; Dudek, 2000; Inouye, 2000). Significantly, then, elevated mortality rates among the elderly are associated with hospitalization. Seniors are at especially high risk of nosocomial infection, mainly because they enter hospitals more often than other groups for diagnostic procedures, surgeries involving “device” implantation, or for maintenance regimes (dialysis, etc.). A survey of international studies about the prevention of hospital-acquired infections advises that the incidence can be lowered by the continuous presence of hospital infection-control nurses, the standardized assessment and analysis of infection rates with the targeted adoption of evidence-based hygienic requirements (commonly known as “surveillance”), and an adequate number of skilled staff in nursing and health care (Panknin, 2005). Nosocomial infections comprise the great majority of “complications” for all patients in hospitals and they are general indicators for the quality of health care and nursing. We suggest in this chapter that observations made by elderly patients about the understaffed and often unhygienic circumstances of the hospital environment are also valid indicators of impending or existing problems in a hospital system. When one asks a senior, who has 104

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cared for a home her entire life, what she thinks of the major university research hospital where she has been admitted, and she rises from her bed, in pain, and says, “It’s a swamp!,” we should pay attention. Although seniors may observe and experience the staffing problems in hospitals as increased infection levels, they do not often complain about them directly –– not wishing to be seen as a “troublesome” older person is a way of trying to maintain minimum care for oneself. Yet this only compounds the problems they experience. Among all hospitalized patients, intensive care unit (ICU) patients –– who are frequently elderly –– are at greatest risk for both endemic and epidemic nosocomial infections. Acquisition of infection is a major determinant of mortality in ICUs and prolongs the length of ICU stay, especially for the elderly, which in turn increases the likelihood of death occurring in an ICU. Infectious agents include: Pseudomonas aeruginosa, Enterobacter cloacae, Staphylococcus aureus, enterococci, and Candida spp. These are more likely to be resistant to antimicrobial agents than are isolates from elsewhere in hospitals (Martin, 1993). Recent attention, particularly in Canada, has turned to Clostridium difficile (C. difficile), which has become a common infection with increasingly resistant forms that cause enteric (intestinal) disease that can prove fatal. C. difficile is now the most frequent bacterial enteric pathogen in the developed world. The organism has been the recognized agent of 20–25 per cent of all cases of antibiotic-associated diarrhea since its discovery in 1978. Like other pathogens associated with the digestive tract, it causes a wide range of symptoms, ranging from relatively trivial diarrhea at one end of the spectrum, to life-threatening pseudomembranous colitis at the other (Bartlett, 2007). During one year, C. difficile is estimated to have been responsible for between 409 and 2,000 deaths in the province of Quebec alone (Eggertson, 2005) when a particularly virulent strain of what appears to be an antibiotic-resistant type appeared there (Dial et al., 2004). Because C. difficile–associated disease (CDAD) is transmitted via personal contact or environmentally, the role of patients and health-care workers who are symptom-free but colonized with C. difficile in their intestinal tract makes them the most likely agents in hospitalacquired infections, along with inadequately cleaned hospital wards, equipment, bedding, toilets, etc. (Kuijpers & Surawics, 2006).

The Listening Project The central research goal of the Listening Project was to understand the hospitalization experience from the point of view of seniors, rather than their caregivers, by listening to seniors narrate stories of recent hospital stays. Despite a growing body of work on older adults in hospital, there is very little 105

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research examining health-care preferences and observations about hospitals from the perspective of an older adult (Santo-Novak, 1997). We discovered virtually no other work using an open-ended, qualitative, “ethnographic” methodology to allow older patients a wide range of expression. We elicited narratives of hospitalization from a structured sample of 20 men and women over the age of 65 who had been hospitalized for acute care in the region during the previous two years. Since the study was “open-ended,” we were not looking for specific information, and when we achieved “saturation” in our interviews on certain themes that the subjects (not the researchers) introduced, we concluded those to be valid. Each person was interviewed twice and was given a transcript of the first interview prior to the second meeting. This process increases validity and reliability in qualitative research. The return visits often became important social events for more isolated people, and sometimes only small details were added but many points were emphatically confirmed. A previous study done in Victoria using a similar methodology revealed a strong potential for bias due to the gender of the interviewer (Stephenson et al., 1999), so special care was taken to have an equal number of both men and women interviewed by both male and female researchers in equal numbers. Understaffing was among the most commonly observed themes to emerge, so we view it as among the most serious of issues –– with all the risks that such diminished care obviously entails for health. This supports the main point: contrary to the notion that old people get sick and then enter hospitals and die in a spiralling sequence of losses, they are far more likely to enter the hospital for either acute-care treatment or maintenance procedures and then become far more ill while there, and then possibly die of “complications” beyond their ability to cope and for which the hospital environment itself is responsible. Along with understaffing, difficulties with the physical environment of the hospital and encounters with ageism were also common themes. Comments on interactions with staff comprised the largest portion of hospitalization narratives. These narratives give strong indications about what participants valued or found lacking in their care. The three main themes and their dynamic properties were as follows. First, contact with staff was important and greatly affected participants’ views of their experience –– both negatively and positively. Recurrent negative themes included seniors’ concerns that they would be construed as “fussy” or “demanding” (or other ageist stereotypes) if they asked for assistance. These were understood to compromise seniors’ abilities to communicate problems associated with their care, which might put them at further risk –– a dirty bathroom, soiled sheets, discomfort or pain, inability to sleep, and noise, for example. Positive experiences stemmed from 106

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congenial acts such as being treated with respect, being listened to (as opposed to being neglected or “brushed off ”), and small acts of consideration. Second, narratives of “defining moments” were often triggered by a physical need and how it was met (or not). For example, the height of the bed and side rails affected the ease with which individuals could get from bed to bathroom and gave rise to long waits for staff assistance. In situations like this where many patients can experience difficulty, seniors are often completely immobilized and unable to cope. Occasionally needs were anticipated, but too often they precipitated a long struggle for action, culminating in a soiled bed, agonizing untreated pain, and discomfort. Third, most of the interviews included a description of very busy and harassed nurses in an understaffed environment. The seniors noted the structural constraints that affected their hospitalization, and then they lowered their expectations concerning interpersonal interaction and the meeting of their health-care needs accordingly –– often at subsequent risk to their own health and safety. Patient experiences allow us to provide a general picture of what seniors considered to be good, adequate, and poor care. Interestingly, the smallest of the three major institutions where people had been hospitalized was the only one where positive experiences with staff were reported with any regularity. Experiences in the two larger hospitals were predominantly negative. Studies of seniors’ care from the perspective of health-care providers, as opposed to seniors, reveal some overlapping findings (Rantz, Davis & Tapp, 1995; Santo-Novak, 1997; Hudson & Sexton, 1996; Davies, Ellis & Laker, 2000; Creditor, 1993; Palmer, 1995; Laitinen, 1996). These studies all describe difficulties with communication, navigating bed rails and bathrooms, medication issues, and conflicts between hospital routine and patient comfort. However, patients often value quite different expressions of care than those provided by hospital staff (Hudson & Sexton, 1996). The people we interviewed expressed their desire for greater interpersonal interactions with staff rather than the completion of specific nursing tasks or technical problems that strongly preoccupy health-care workers. Their concern was over agency not efficiency. The order of the findings reflects the order in which narratives were usually constructed –– all events were chronological and fell into sequence easily. Descriptions of going to hospital made up a small portion of hospital reminiscences, since people were either admitted for planned procedures, or the pain and shock of their emergency entrance made the entrance to the hospital difficult to remember. The largest component of the narratives focussed on staff care while in the hospital –– especially the perceived inadequate number of staff. Descriptions of leaving hospital were often marked by great concern over whether patients were actually well enough to leave. Lack of physician–staff communication often made 107

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the departure process very stressful. In keeping with the ethnographic/patient focus of the study, discussion of the themes is interspersed with some illustrative quotations from the interviews. These are italicized for easy identification of the seniors’ voices, but fictitious names are used. Going to Hospital Half of the individuals were admitted for scheduled procedures; half entered through the emergency department. Travel to the hospital was awkward when either subjects or their spouses could no longer drive. This was mentioned as an annoyance and expense but was not an insurmountable problem. The major admissions issue arose when people with scheduled procedures were denied access to private or semi-private rooms. Many seniors had extended insurance plans that included private rooms but were simply unable to obtain one due to overcrowding and bed closures. Procedures for assigning rooms appeared very unclear, and there was frustration over this –– which is largely an issue of privacy, an important value for many seniors. Among those who entered via emergency services, half travelled via ambulance and with one exception (the ambulance got lost) were pleased with the level of paramedic care. The remaining people were driven by family members, took a taxi or even rode the bus to the emergency ward. While some had only hazy memories of their admission most who entered through emergency commented on exceptionally long waits: ... when I had my heart attack, I thought I was never going to get a bed and get out of emergency. Once you get out of emergency, things go pretty smooth. That seems to be the hold-up. (George)

Being in Hospital Staff Identification Seniors often had difficulty discerning the different roles of staff. Current dress standards in hospitals do not differentiate RNs (registered nurses) from LPNs (Licensed Practical Nurses) and other workers. The inability to read the fine print on name tags or to see RN pins without spectacles impeded the recollection of names and positions –– people struggled not to appear forgetful or rude: There was a nighttime nurse, I don’t remember her name ... my glasses were off all the time and I couldn’t read their names and they never told me what their names were. I did not like having to call, “Nurse.” (Molly)

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This has some important implications for treatment and safety issues. Not being able to identify the roles of the individuals to whom elderly patients were speaking lent confusion to their hospital experience and predisposed others to think of them as confused: Some of those people that came in, I mean, half of the time, I didn’t know whether to talk to them as a nurse or whether she was going to clean my floor or something.... I think there was only about two that dressed properly, in nurse’s uniform. I think if they all sort of dressed in nurses’ outfits, it gives you confidence. If a person is dressed as a nurse, okay, she’s a nurse. And then you feel a bit more confident about what they’re doing. (Matilda)

Asking an individual for something that he or she is not qualified to provide can delay treatment. Participants commented that it was difficult to identify a particular staff member or discuss a need (e.g., to ask about pain medication or the whereabouts of belongings) without knowing whether they would ever see them again. Good Care: Physical Comfort, Routine, and Agency Participants characterized the best care as not having to repeat requests for assistance. They were able to sustain agency in interactions with staff to ensure their needs were met. We follow Singer and Baer (1995), whose definition of agency includes the ability to change the course of events through one’s own intervention. Patients described “good” staff as those who were able to interact with patients as people, without treating them like a nuisance. Excellent care was described as having assistance without having to ask, or having staff respond promptly or within a reasonable amount of time when asked for help. Here we see interaction tinged with mutual respect and the ability of seniors to negotiate for their needs without appearing to be demanding. Betty’s experience is an example of a case where the participant was able to negotiate with staff (in this case for a more familiar routine). She specifically mentioned several times that the staff did not let her feel any pain and were careful to make her as comfortable as possible and encourage her increasingly independent movement after a hip injury: The last two weeks that I was in there, there was a young male nurse who used to come in and attend to us, there were two [of us] in there, the other was this great big lady who had broken her leg too. And I’m a reader. So, about things, we made a little arrangement: Put me to bed at 8 o’clock. 8 o’clock? I go to bed at 1 or 2 in the morning for heaven sakes. I stay up. I go to bed at 8 o’clock? And he says, “Well, 109

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okay.” I suggested that he attend to all the rest of his patients and go and get himself a cup of coffee and then come and help me. He got me a great big, huge soft easy chair to sit in in the daytime once they’d got me out of bed and that would be after the first two weeks I guess. And they had a good light for me. They had a gift shop over there that had books and they could bring me books and magazines to read and so on. But this young man and I had a little thing going and he would come when he’d finished everybody else and had a cup of coffee. Then, it was time to go to bed. But he was so good. They would help me into the chair and then I could get out of the chair with the walker. I could get around and drag this leg along. The nurses and the doctors were just excellent. And I got more attention than I expected when I was mobile. They’d let me stand up and wash myself at the basin. But I don’t suppose I stood there for one single day that they weren’t peeking around the corner to make sure I was still on my feet. (Judy)

Adequate Care: Busy Staff vs. Seniors’ Needs Care that we characterize as adequate was often labelled by subjects as “fine,” “O.K.” or “so-so.” Adequate care could quickly descend into neglect. It was here that the quality of care, including staff interactions and physical comfort, appeared to be weighed against the widespread perception of understaffing. Adequate care meant that patients felt staff were very busy but performed reasonably well, given limitations. In this case, the patients often did not require a great deal of help but frequently observed that other individuals clearly required more. Many people empathized with the work level of the care staff. For example: They were overworked, no question about it. They were having difficulty trying to cope with everything and one had to feel sorry for them. (Derek) Well, I feel that I had all the help I needed. But a lot of people that would require more help they didn’t have enough time to get it. (Guinevere) You know, they don’t have time for a lot of chit-chat, if it isn’t necessary. (Margaret)

The following narrative illustrates a case where comfort became a problem due to the type of bed used. However, special staff attention intervened in order to fill that gap and provide adequate care. Needs were met through good relations with staff members, despite perceived understaffing, and the patient obviously enjoyed interacting with staff.

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And the best [part of the hospital experience], well, you know something, there were several of them, both the nurses and what do you call it, the little aides, I mean, they were really, really good. I really enjoyed them. I enjoy young people. There were two aides and four or five young nurses that I really enjoyed. I’ll tell you one thing that’s not very good anymore, is your darn bed, the way you don’t get the sheets and other things that you used to get a long time ago. That part of nursing has gone down, I’ll tell you. You don’t get the personal care that you used to get a long time ago. Well, your bed would be made up and be halfway comfortable, but now they just don’t seem to. Because some of the beds, the sheets come right off and you’re laying on this darned plastic. And that’s not very comfortable. And actually, it was one of the nurses from one of the other rooms and a little aide came in and cleaned my bed and they went out and got a sort of a little thin mattress and made it up. They made it so it was at least comfortable. Where one time, comfort seemed to be very important to care, whereas now that’s not as important. (Virginia)

Virginia continued that despite good relations with staff in general, her experience was tempered by ageism. She noted that staff could be impatient and not recognize the need for older people to be given more time in interactions. She felt there was a need to be able to “stick up for oneself ” when staff members were brusque. Although she felt this did not affect her care, as she was able to be assertive, she noted this was not the case for all seniors in hospital: The one thing I’ll say about a lot of the nurses and whatnot, they don’t realize that old people’s reflexes and whatnot are not as quick as younger people. And there’s a few of them too, that talk down to older people. Well, you don’t move as quick. They expect you to go as fast as a younger person. It might take me twice as long to get out of a chair as it would a younger person, you know. Well, they’d be impatient and you could tell if you [didn’t] get it right off the bat, well, yeah, impatient would be a good word. Not me so much, but there was another woman that was treated ... cause I still can stick up for myself. You come in contact with people that can’t. I mean some of them are really good. They were understaffed you know, but there’s the odd ones that made it rough for old people. I know even my girls [her daughters] have a hard time. I’ve had to remind them a few times, “Hey, I can’t do that anymore.” I can understand how you can [forget]. (Virginia)

Inadequate Care and Unmet Needs: Difficult Patients or Staff Difficulties? Many seniors felt a lack of assistance keenly, and their narratives make this very clear. They felt that it took considerable effort to get any assistance at a

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time when, due to illness, they were least able to make such an effort. Difficult interactions with staff, which appear to be exacerbated by stereotypes of seniors as “demanding,” meant that older patients were denied agency or any sense of autonomy and attempts to improve their own situations were actively thwarted. A physical ailment or lack of ability, coupled with staff who have difficulty recognizing a need, can create considerable frustration, a sense of helplessness, and often additional pain. Pain, in particular, contributes to a perception of inadequate care, and the theme of pain control as elemental to good care ran through many interviews. After breaking his wrist and experiencing considerable pain, Bill had difficulty getting adequate pain medication and was asked to perform tasks (such as tying up his hospital gown) that he was unable to do. He also mentions understaffing, as he was in hospital during work action (a labour slowdown) on the part of nurses. He felt his discomfort was not well attended to, and worsened the experience for him, and he then had trouble getting other needs met. He considered nurses to be providing proper care once he perceived that they were doing something to ameliorate his condition through pain control: So okay, they put me in the emergency and that’s not a very good place to lay but they didn’t have any beds so they put me in this emergency bed and by this time I was getting quite a bit of pain. So they gave me some Tylenol and I said, “This is not doing any good. Can you give me something else?” Well they said, “No. All I can give you is an aspirin.” “Well,” I says, “That’s not very good. You’ve got to give me something else.” So, about an hour later, I guess she had found a doctor again and [he’d] said it was okay for me to have some morphine. So then after that, she said, “Don’t wait too long.” She was very good. She said, “Don’t wait too long, because if you wait too long, then it’s too late to take it and it won’t do as much good.” So she was very helpful that way. So every so many hours I would get a shot. Oh that’s another thing, when I [came] in there, when you sign in, “Okay this is your bed. Strip and put this thing on.” Now, how the hell are you going to do that when you’ve got a broken arm? And so you finally get this thing on and there is no way in hell you can tie this thing with a broken arm behind you. But they’re not offering to help you. And then, can you believe this?, you’ve got a broken arm so you’re lying down and it’s very difficult to keep your arm [up], so, I needed something to put underneath so I asked for a pillow. “We don’t have pillows.” So she finally comes with four or five blankets. She says, “This is the best I can do.” I mean, what the hell is the matter with them? You know you can’t just hold it up in the air. You had to ask. Everything you had to do you had to ask. It’s getting to be terrible. (Bill)

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Molly’s experience with a delay in medication for back spasms illustrates the same themes. Delays before receiving pain medication were hard to bear. Confusion over staff identification exacerbated the situation for her. Molly continued that she felt the entire situation might have been avoided if she could have changed her position in bed more frequently to prevent the back spasms, either with a self-adjusting bed or through staff assistance: I was getting muscle spasms and Dr. X said, “Instant, as soon as you get a muscle spasm, someone should take you out of that.” But I couldn’t have it at bedside, I had to get a nurse to get it and I thought it was a nurse there who was taking my blood pressure. She says, “Oh, I’ll get the nurse to give you the medicine.” Now it might have been two different people. I got the [medication] two hours later. I was in spasm for two hours. I was in extreme pain and discomfort and that two-hour wait for it did not indicate Doctor’s instructions that say “Stop. Immediate.” (Molly).

Fiona’s experience, before moving into the rehabilitation ward, shows similar difficulty having her needs met. Her difficulties over several days included sleeplessness (due to other patients in the room who were suffering from dementia). She had difficulty communicating with staff, perceived a lack of control over her environment, and later experienced nausea. She describes waking the first night after surgery, cold and afraid in the dark from the disorienting noise of others in her room shouting. The second night, this occurred again, and she had a difficult time with staff getting this changed. Eventually her roommates were moved into the hallway for the night, and the remaining nights she herself was moved into the hallway. She experienced a hospital environment that interfered with her recovery by creating sleeplessness. Her efforts to negotiate an alternative arrangement that could meet her needs were met with hostility from staff: On the second night, when bedtime came and we were settled down for the night and I went to sleep and then all this racket started up again. All this shouting and clapping and yelling for the nurse and so forth. I rang the bell and an orderly came, or an aide came. And I said to her, I can’t stand this. And she said, what do you mean? She was antagonistic, what is this that you can’t stand? I said the noise, the yelling, and the shouting, surely you’ve heard it? And she said, what yelling and shouting? And I said, it was like this last night, my son told them at the nurses’ station and they understood. I said, they’ve been going on now for hours. And she looked at her watch and she said, it’s still only midnight. And I said, well, you know, time means nothing to me. I didn’t know if I’d been asleep for one hour or six hours. All I know is that I’m wakening in the dark and there are these noises and 113

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this yelling and shouting and so forth. So she said, very shortly she said, I’ll get the nurse. So, she went off and came back with, I presume it was the nurse. Well, she [the nurse] was very business like and so forth, and she said to me, we’ll move them out of the room and with that she proceeded to move these two out into the hallway. As I said, when she said, what yelling and shouting, I thought, is it me? Am I hallucinating here? Or what is going on?(Fiona)

Fiona further commented that she found her experience in acute care very difficult, particularly as she felt she was not acting in a manner true to her character. She reported low spirits and difficulty recovering: It was just a depressing, a depressing experience at a time when your stamina and your psyche is at an all time low, anyway. It was just a very depressing experience. I wouldn’t, I wouldn’t be hesitant to go in again, you know, but I would be armed with the experience I have had. And I would deal with it differently, you know, I think I would insist a little more than I did before. Maybe I wouldn’t, I don’t know. Maybe I was so drugged I lost the will to insist on anything. Well, one becomes very submissive and I’m not a submissive person. But I’d been getting, as I said, no sleep. The food was appalling, but I had an intravenous, so I probably didn’t suffer anything in that regard. But certainly, I had no feeling whatsoever that I was recovering. None. None. None. It wasn’t until the Friday, when I’m still being sick and they say to me, we’re transferring you to rehab today that I began to feel a level of hope. (Fiona)

Robert is another person who experienced difficulty getting assistance. Waiting in the emergency room and understaffing increased his discomfort and made him question how easy it would be for him to get well. His complaint of waiting for staff assistance getting to the toilet was made by several others, some of whom mentioned difficulty getting out of bed due to high beds and/or bed rails: Well, let’s see. I had an angioplasty whatever it is, so then, I remember after having that I was put in a ward overnight. And there were comings and goings. People were being flown in. And I tried to ask for help because I had an overactive bladder at that time and nobody would come. And I had the intravenous stuck in my arm for everything else. I was in sheer torture for about two hours and understaffing I guess was the main reaction there. And then the long waiting list in the emergency, trying to get something done. And there’s quite a difference between the nurses and the aides. Some of them are very callous and couldn’t care less what your problems are. In the emergency ward, 114

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there was only one nurse who had some empathy and actually did the proper procedures. Again due to understaffing and cost saving I would imagine. It sure makes you concerned if you’re going to die in the process. I mean, you’re just stacked up like a piece of cordwood, very impersonal and to a certain extent, uncaring. Again I’m not blaming anyone. That’s just the system. (Robert)

Another difficulty that contributed to lack of care was that seniors were sometimes unable to reach food trays and water left for them. Visitors were often very helpful here, but if none were at hand, seniors would have to get the attention of staff to move food closer to them. My biggest problem was when I had my prostate surgery, I couldn’t reach my food. Because somebody didn’t put the tray over so I could reach it. A very simple thing and it doesn’t cost any money. Just move the table. It doesn’t cost any extra money to have a glass of water sitting there, or a jug of water. It’s just very, very simple things. (Mike)

Leaving Hospital Most seniors interviewed expressed mixed feelings about leaving the hospital. While many were happy to be going home, others were anxious, concerned about not feeling well enough to leave. A common theme was the uncertainty of departure. Many individuals were not informed until the last minute about when they were going home or had received conflicting advice from different care professionals (e.g., the doctor vs. the nurse, or the specialist vs. their general practitioner). The uncertainty about their release from hospital often made arrangements for someone to drive them home difficult, as well as being emotionally trying: The following morning [after surgery], the nurse came with a tray to change the dressing. She said, “You’re going home.” I said, “No, no. He told me I would be in 2 or 3 days.” “No, no,” she said, “You’re going home.” They had actually phoned my daughter-inlaw to make some arrangements for someone to come. However she left the tray there and went for a coffee break. When the surgeon came in he said to me, “What’s that tray doing here?” I said, “It’s to change my dressing before I go home.” “Oh no, no,” he says, “I don’t want that dressing changed until tomorrow.” He said, “I’ll make a note that you’ll go home tentatively tomorrow. You’re not to go home if you don’t feel like going home.” So when the nurse came back she was quite surprised that he’d said he didn’t want the dressing changed and that I couldn’t go, which was, you know, it was just as well that he came in before the dressing was changed. (Jennifer)

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Some people felt rushed out of hospital, particularly when they still felt very sick. One mentioned that she felt a younger person would not have been rushed out so quickly. Others felt powerless to insist on staying in the hospital. Joyce represents one of the worst cases of this. She had a long wait in emergency before having her kidneys flushed out and felt very unwell. It was late at night and she wanted to stay in hospital to recover before she went home, but had a difficult time negotiating this with the staff: They kept saying, “You have to go home. We haven’t got no bed.” Christ, there’s all kinds of beds. The rooms are all made up, you know. This is night time now. I said, “Can’t I stay for the night? I can go home in the morning.” “Oh no, you’ve got to go now.” And you’re laying there half dead and full of pain. And [they] shove you down the hall. Then all of a sudden, they pushed me into a room but they said, “You’ve got to be out of this room by 6 o’clock.” Well, God, I said, “Well, gee, it’s almost getting on to 3 and 4 then.” And then before I knew it, there’s a nurse beside me yelling to me, “You’ve got to get up now. You’ve got to get out of here.” And not very nice either. Nasty to be honest, really nasty. And oh God, I was so full of pain. And I got dressed the best I could. And I went down. They took me down in a wheelchair. And it was still dark out. It hadn’t lightened up yet even. It was not even 7 o’clock in the morning yet. I called a taxi and he brought me home and I got into bed and you know I stayed in bed all day. I was so tired. (Joyce)

Concern about not feeling well enough to go home permeated seniors’ discussions of recovery at home. Recovery is a difficult period requiring an adjustment to a different level of mobility and independence as well as recovery from illness or surgery. In addition to transport to and from the hospital and assistance with food and other small items in the hospital, recovery was where a support system of friends and family became extremely important. Family members were critically important in helping out, but were constrained by work and other commitments: And to come home alone. Like, my son brought me home. And he said, “Mum, you’ll be alright?” I said, “Yeah, I have to be alright.” Because they have to go to work. I mean, they can’t stay home with you. (Rosemary)

Those who lived on their own worried about their recovery and some who were married were concerned about the strain that nursing them at home placed on an elderly spouse. As with concerns about understaffing while in the hospital, structural constraints about how long one could stay in hospital were

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recognized as making recovery potentially more difficult, but were considered to be outside an individual’s realm of control. DENNIS –– However, it wasn’t a major problem. I mean it was just a personal choice, that it would have been nice to have spent another couple days in the hospital. INTERVIEWER –– Did you voice that? DENNIS –– No. I didn’t voice that because I knew that who would there be to voice it to? –– my family and worry them? Tell the nursing staff and the doctor who were going to be faced with either in the doctor’s case telling me, “We have other patients waiting for your bed.” And nursing staff who really can’t control the situation. Start telling them and they’ll say, “Well, we can’t do anything about it. This is the policy.” Just to amplify that point, when I came back, I sat in that chair for three weeks. I couldn’t lay down. Because when I laid down on the bed, it pulled on the chest and pulled on the incision and on top of that, I would wake up and fidget and then sleep again and wake up again. And I think that it was hardly fair on my wife [to] have her worrying about my state at that time. Two days more in the hospital might have relieved it a bit. (Dennis)

Several people suggested that an intermediate convalescence level of care –– either more support from family in the home or at a specific institution –– could help those unable to receive care from family or home support services. It could also free up acute-care beds. Discussion: Low-Tech Solutions by Listening to Patient Needs The seniors’ hospital narratives that we have excerpted here reveal insights into structural barriers to their care and the wider social context in providing care. Two kinds of context are of special interest. First, there is the experience of going to and leaving hospital that is mentioned in the seniors’ narrative accounts. This information is almost never found in survey studies about hospitalization. An abiding concern over how to live when one returns home is part of the way in which patients experience acute care; it does not begin and end with the hospital. Additionally, the broad context of communication is important for understanding and improving staff–patient interaction and, ultimately, healing. The importance and positive effects of caring relationships cannot be taken for granted (Graham & Bassett, 2006). They take place within the structure of work practice, the physical environment, patients’ physical needs, ageist attitudes, and struggles by older patients to maintain agency and a sense of autonomy. Interpersonal interaction of staff and patients was especially important to the quality of care as perceived by older adults in our study.

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Care perceived as being very good took place in a context that allowed an older adult agency in their interactions with staff. Agency refers not merely to the wish to achieve particular ends, but also to the “capacity of doing those things in the first place” (Singer & Baer, 1995: 341). Ageism and the stereotype of seniors as “fussy” or “demanding” greatly diminish the agency of an older adult, paradoxically often reproducing the same behaviour regarded as problematic in the first place. While many seniors we spoke to felt the need to “stick up for themselves” while hospitalized, they also did not want to be perceived as “difficult” patients and consequently were silenced. Ageism dissolves personal agency by ignoring seniors’ own need-based communication with staff. This can have a profoundly negative impact on patient recovery, making the discourse of loss a kind of self-fulfilling prophecy. It is now well understood that positive and negative social interactions influence both the level of recovery achieved (completeness) and the time recovery takes, from both injuries and illnesses such as wounds, stroke, and cardiac arrest, as well as from surgery. This is because psychological distress greatly exacerbates neuronal death following stroke and cardiac arrest, and delays wound healing, via a common mechanism involving stress-induced increases in corticosterone (Devries et al., 2007). Agency isn’t just about being polite –– longer healing times result in greater morbidity and mortality, as well as making the working conditions of staff ever more difficult. Ageism has been found to bias treatment in the clinical setting (Tappen & Beckerman, 1993) and older adult patients have been observed being infantalized and rushed in acute care (Davies, Ellis & Laker, 2000). Rantz, Davis and Tapp (1995) mention staff frustration with the slower reaction times of older adults. Our study reveals that many older adults do experience such interaction and frustration as ageist and detrimental to their recovery. While ageism as a problem is recognized in the literature, the sense of anger and frustration expressed by study participants and revealed in some of the quotes we have included in this chapter is often missing from other studies that focus on caregivers. The stories of Bill, Fiona, Molly, and a great many others we have not cited here demonstrate the disturbing and painful consequences to the elderly patient of such issues. On one level, these are stories of personal struggles for dignity in interpersonal interaction where individuals have substantial physical needs but are powerless to care for themselves. In these situations, seniors mentioned feeling devalued (for example, some participants mentioned they felt a younger person would have received more attention) or even dehumanized (such as the description of being “stacked up like cordwood”). The melding of physical tasks or the physical environment into the percep118

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tion of nursing care in seniors’ experiences is explicit in these narratives. When the experiences of patients are relived in their telling, differences from other staff-oriented studies emerge. These are to be expected, since caregivers and patients have different constraints and concerns within their mutual interaction. High beds with rails make moving from bed difficult; food trays being too far away to reach –– these are technological problems with health implications that can be easily resolved by listening to the needs of the patient. Thus, what were termed technical problems by staff became staff-related problems to the elderly patient. This has methodological implications, as quality-ofcare surveys generally do not recognize the interaction of the physical environment of the hospital with patients’ perceptions of staff care. Differences between patient and caregiver interpretations of activities centre on discussions of what staff commonly refer to as “toileting.” Rantz, Davis and Tapp (1995) note that this is a task that needs to be performed regularly by caregivers (not patients!), and for best results they suggest that it should be done according to the accustomed routines of patients. Hudson and Sexton (1996) note that patients rank “toileting” activity much higher than do nursing staff. Hamilton and Lyon (1995) claim that some nurses prioritize technical tasks over basic care needs such as “toileting.” A statement about “regular toileting” as an abstract concept or task performed by a health-care provider bears very little resemblance to Robert’s description of being in “sheer torture for about two hours” while waiting for assistance to relieve his bladder. The discussion of the nursing task in an isolated context masks the degree of human need, not to mention the patient’s embarrassment, represented by this situation. The euphemism “toileting” itself obscures the reality of the situation by transforming a crucial and private bodily function of the patient into the job of a care attendant. Finally, interviews with older adult patients point to the importance of the structure of the hospital as a workplace. A background of change, cutbacks, retirements, and shift work is sometimes mentioned in other studies (Rantz, Davis & Tapp, 1995), as is the perception of nurses that they have insufficient time to provide quality nursing care (Tappen & Beckerman, 1993; Williams, 1998). But how do such structural constraints affect older adults in hospital? The seniors that we spoke to consistently mentioned understaffing, job action, a shortage of beds, and other issues that affected their care. It was the single most unifying theme in all the interviews: I noticed a lot of them [the staff] were working under stress and were rather cranky. In fact, one nurse I recall being very cranky and not doing her job at all the way she should have been. I sensed a level of tension all the time amongst the 119

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nurses.... The thing is, I have a problem. I find I can’t blame the nurses. I find I blame the system. I find that it’s structured wrong. (Molly)

Franklin (1999) and Stein (2001) have noted a widespread move toward greater efficiency by changing the nature of work practice and public institutions in Canada, in particular, and in other locations more generally. In the context of the hospital, Bowker & Star (1999) have commented on the potential for the classification of work structure to impinge on the kind of care that nurses can give: When discretion and the tacit knowledge that is part of every occupation meet the medical bureaucracy, which would account for every pill and every moment of health care workers’ time, contradictions ensue. This is especially true of the “softer” areas of care. (29–30)

In an environment requiring increased efficiency, so-called soft areas of care, such as adequate communication and respect, are difficult to measure and include in schedules or surveys. Flexibility to meet the needs of individual patients also becomes more difficult. In the case of older adults, where each individual may have a unique constellation of conditions and require slightly different treatment, the efficient path of treatment is likely to leave many needs unmet, thus ensuring greater suffering and likely higher mortality as well. Workplace efficiencies are simply not commensurate with patient-specific care, and in the instance of older persons it is undoubtedly sometimes lethal. More work is needed that recognizes and explores how structural constraints, such as those recognized by the seniors themselves, are affecting their care and their suffering, and in all likelihood their greater risk of death while in acute-care hospitals.

Acknowledgements We wish to acknowledge the support of the Capital Health Region and the University of Victoria, Faculty of Social Science for funding. We also thank all of the study research assistants, Rory Coughlan for design consultation, Ken Howes for interviewing, Maureen Stephenson for technical assistance, Kristin Ackerson for critical feedback, and many individuals on staff at the Capital Health Region, including Belinda Parke, who initiated and facilitated the study.

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References Aminzadeh, F., and Dalziel, W. 2002. “Older Adults in the Emergency Department: a systematic review of patterns of use, adverse outcomes, and effectiveness of interventions.” Annals of Emergency Medicine 39 (3): 238–47. Bartlett J.G. 2007 (May–June). “Clostridium difficile: old and new observations.” Clinical Gastroenterology 41 (Supplement 1): S24–S29. Bowker, G.C., and Star, S.L. 1999. Sorting Things Out: classification and its consequences. Cambridge, MA: MIT Press. Canadian Institute of Health Information (CIHI). 2000. Canada’s Elderly Primary Users of Hospitals. Ottawa: CIHI. Creditor, M.C. 1993. “Hazards of Hospitalization of the Elderly.” Annals of Internal Medicine 118: 219–33. Davies, S., Ellis, L., and Laker, S. 2000. “Promoting Autonomy and Independence for Older People within Nursing Practice: an observational study.” Journal of Clinical Nursing 9: 127–36. Dial, S., Alrasadi, K., Manoukian, C., Huang, A., and Menzies, D. 2004. “Risk of Clostridium difficile diarrhea among hospital inpatients prescribed proton pump inhibitors: cohort and case-control studies.” Canadian Medical Association Journal 171: 1. DeVries, A.C., Craft, T.K.S., Glasper, E.R., Neigh, G.N., and Alexander, J.K. 2007. Social influences on stress responses and health. Psychoneuroendocrinology 32(6): 587–603. Dudek, S.G. 2000. “Malnutrition in Hospitals: who’s assessing what patients eat?” American Journal of Nursing 100 (4): 36–43. Duffy, J.R. 2002. “Nosocomial Infections: important acute care nursing-sensitive outcomes indicators.” Clinical Issues: American Academy of Clinical Nursing 13(3): 358–66. Eggertson, L. 2005. “Quebec’s official numbers: 409 C. difficile deaths.” Canadian Medical Association Journal 173: 11. Foreman, M.D. 1992. “Adverse Psychological Responses of the Elderly to Critical Illness.” AACN Clinical Issues in Critical Care Nursing 3: 64–72. Franklin, U.M. 1999. The Real World of Technology. 2nd ed. Toronto: House of Anansi Press. Graham, J., and Bassett, R. 2006. “Reciprocal Relations: the recognition and co-construction of caring with Alzheimer’s disease.” Journal of Aging Studies 20 (4): 335–49. Hamilton, L., and Lyon, P.S. 1995. “A Nursing-Driven Program to Preserve and Restore Functional Ability in Hospitalized Elderly Patients.” Journal of Nursing Administration 25: 30–37. Hudson, K.A., and Sexton, D.L. 1996. “Perceptions about Nursing Care: comparing elders’ and nurses’ priorities.” Journal of Gerontological Nursing 22: 41–46.

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Inouye, S.K. 2000. “Prevention of Delirium in Hospitalized Older Patients: risk factors and targeted intervention strategies.” Annals of Medicine 32 (4): 257–63. Jacelon, C.S. 1999. “Preventing Cascade Iatrogenesis in Hospitalized Elders: an important role for nurses.” Journal of Gerontological Nursing 25: 27–33. Kuipers, E., and Surawicz, C. 2006. “Clostridium difficile infection.” The Lancet 371. 9623: 1486–88. Laitinen, H. 1996. “Patients’ Experience of Confusion in the Intensive Care Unit following Cardiac Surgery.” Intensive and Critical Care Nursing 12: 79–83. Martin, M.A. 1993. “Nosocomial Infections in Intensive Care Units: an overview of their epidemiology, outcome, and prevention.” New Horizons 1 (2): 162–71. Palmer, R.M. 1995. “Acute Hospital Care of the Elderly: minimizing the risk of functional decline.” Cleveland Clinic Journal of Medicine 62: 117–28. Panknin, H.T. 2005. “How to Prevent Nosocomial Infections? An international overview.” Original article in German. Pflege Z 58 (6): 2–8. Parke, B., and Brand, P. 2004. “An Elder Friendly Hospital: translating a dream into reality.” Canadian Journal of Nursing Leadership 17 (1): 62–76. Parke, B., and Stevenson, L. 1999. “Creating an Elder Friendly Hospital: one organization’s experience.” Healthcare Management Forum 12 (3): 45–48. Rantz, M., Davis, N.K., and Tapp, R.A. 1995. “Assessing Elderly Acute Care Services: improving quality amid chaos.” Journal of Nursing Care Quality 9: 1–9. Santo-Novak, D.A. 1997. “Older Adults’ Descriptions of Their Role Expectations of Nursing.” Journal of Gerontological Nursing 23: 32–40. Singer, M., and Baer, H. 1995. Critical Medical Anthropology. Amityville, NY: Baywood. Stein, J.G. 2001. The Cult of Efficiency. Toronto: House of Anansi Press. Stephenson, P.H., Wolfe, N.K., Couthlan, R., and Koehn, S.D. 1999. “Methodological Discourse on Gender, Independence, and Frailty: applied dimensions of identity construction in old age.” Journal of Aging Studies 13: 391–401. Tappen, R.M., and Beckerman, A. 1993. “A Vulnerable Population: multiproblem older adults in acute care.” Journal of Gerontological Nursing 19: 38–42. Williams, A.M. 1998. “The Delivery of Quality Nursing Care: a grounded theory study from the nurse’s perspective.” Journal of Advanced Nursing 27: 808–16.

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CHAPTER SEVEN

Embodied Selfhood: Ethnographic Reflections, Performing Ethnography, and Humanizing Dementia Care

Pia C. Kontos

Anna1 dressed simply, for the most part wearing jogging suits. She had a different coloured jogging suit for each day of the week. Besides her plain wedding band, the only jewellery that she wore was a large Star of David on a gold chain bought decades ago with her husband in Israel. It was costume jewellery, parts of which had turned a faded green from years of wear. Nonetheless, not a day passed without Anna adorning herself with the beloved necklace. Anna was barely five feet tall. She was a sturdy woman with broad hips that accentuated her thin, severely bowed legs. As weak as Anna appeared, she would spend six hours a day pushing her walker up and down the long “U” shaped corridor of her locked Unit. Anna paced from her room to the locked exit that led out to the elevators, back and forth, in a relentless effort to reach the outside world. Having finished her breakfast, Anna stood up and made her way towards the hallway, no doubt to see if by chance the door to the exit had been left open. In doing so, she noticed another resident seated alone at a table and stopped abruptly. The woman had oxygen tubing protruding from her nose which was attached to a portable tank hanging on the back of her wheelchair. She was withdrawn and remote, as if she had faded away leaving behind only a vague form. Her breakfast 125

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had been served but, unable to feed herself, she was waiting for assistance. Her private sitter had gone to the kitchen momentarily. Anna’s preoccupation with the exit doors was suddenly on hold. Looking at the woman’s untouched breakfast, Anna eagerly pushed her walker up to the table and pleaded, “You have to eat!” Her tone expressed a genuine maternal worry. Releasing her hands from her walker, Anna leaned her right forearm on the table for support. She began to peel a boiled egg from the woman’s plate. This was no small effort given her crouched posture that afforded little leverage. Anna placed the peeled boiled egg on a napkin in front of the woman and said, “You must be hungry. Eat!” The woman looked up at Anna and a faint smile appeared beneath the deep creases of her face. The woman took hold of the egg, and continuing to gaze into Anna’s eyes, her head fell forward gently, then back, blinking her eyes slowly. Anna nodded in approval and smiled proudly. Still leaning on the table, Anna removed the foil lid of a small plastic cup of orange juice. She then leaned on her forearm to push herself upright. Standing upright but grasping the table for support with her free hand, Anna lifted the plastic cup and said with joy “L’Chiam!,” the traditional Jewish toast to health and life. With this gesture Anna declared the moment celebratory. Placing the cup back down on the table Anna resumed her original mission. She pushed her walker out of the dining room and headed towards the locked exit.

Anna’s attention, support, and caring, and the other residents’ response to Anna’s gestures may seem unexceptional. However, when the context of the ethnographic field is considered –– it is an Alzheimer’s support unit –– the significance of the narrative is far from mundane. This is because much of the literature on Alzheimer’s promotes the view that individuals with dementia experience a steady erosion of selfhood to the point at which no person remains (Fontana & Smith, 1989). Davis (2004: 375) echoes these sentiments in maintaining that “what is so devastating about the relentless nature of dementia is the very splintering of the sedimented layers of Being . . . until there is nothing left.” The sufferer of Alzheimer’s disease is said to be one “whose mind has been dissolved and humanity stolen, leaving only a body from which the person has been removed” (Keane, 1994: 152; emphasis added). Thus, while Alzheimer’s and its kindred dementias are usually described and analyzed in terms of the cognitive dysfunction they produce, there is also an assumed existential loss of self (Herskovitz, 1995; Ronch, 1996). The presumed existential erosion of selfhood with Alzheimer’s disease is to a large extent the consequence of a certain philosophical inheritance.2 The root of this inheritance can be traced to the positivistic philosophy of Descartes, the primary features of which are the separation of mind and body, 126

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the subordination of body to mind, and the associated dominance of cognitive rationalization. As Taylor notes, there is for Descartes an ontological cleft between the mind and a mechanistic universe of matter, the latter being “most emphatically not a medium of thought or meaning, which is expressively dead” (1989: 148). The threat to the self in Alzheimer’s arises from the loss of what are deemed to be the guarantors of personhood: cognition, rationality, and memory. These core features of personhood can be further traced to English empirical philosophy (Locke 1700/1975).3 Locke’s concept of “person,” arising from practices of law, property, and trade, is the first major treatment of the modern self: Person, as I take it, is the name for this self.... It is a Forensick [sic] Term appropriating Actions and their Merit; and so belongs only to intelligent Agents capable of a Law, and Happiness and Misery. This personality extends it self [sic] beyond present Existence to what is past, only by consciousness, whereby it becomes concerned and accountable, owns and imputes to it self past Actions, just upon the same ground, and for the same reason, that it does the present. (346; emphasis in original)

The Lockean representation of self is framed by cognition, with consciousness playing a cardinal role. Consciousness, according to Locke, is so indispensable to self that he goes so far as to suggest that, “without consciousness, there is no Person” (1700/1975: 344). If the very notion of dementia implies the destruction of selfhood, then what should we make of the connection between Anna and the other resident in the above ethnographic fieldnote, a connection that demonstrates genuine caring, coherence, and even spontaneity? In increasing numbers, social scientists and health-science scholars are challenging the loss of self that is so widely associated with the cognitive deficiencies lying at the core of dementia (Ballenger, 2006; Hughes, Louw & Sabat, 2006; Kitwood, 1997; Post, 1995; Sabat & Harré, 1992). However, the body itself has not been incorporated into the increasing dialogue between diverse representations of the nature of the self and explorations of the experience of having Alzheimer’s disease (Kontos, 2005; 2003). In this chapter I articulate a new challenge to the presumed loss of selfhood in Alzheimer’s disease, one that captures the ways in which selfhood is embodied and reproduced non-discursively through our corporeal actions. Drawing upon data from my ethnographic exploration of selfhood among a group of cognitively impaired residents of an Alzheimer’s support unit (Kontos, 2004), I argue that selfhood is embodied. Embodied selfhood is a perspective I developed that emphasizes the corporeal nature of our being that exists below the level of consciousness and language, beyond the reach of 127

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introspective scrutiny, and is enacted at a pre-reflective level. This is not to suggest that the pre-reflective body exhausts selfhood; however, and this is the crucial point, even in the absence of cognitive impairment, the pre-reflective body would still continue to be fundamental to selfhood. My concept of embodied selfhood takes its theoretical bearings from Merleau-Ponty’s phenomenological understanding of non-representational intentionality and the primordial body (1962), and Bourdieu’s concept of habitus, which links bodily dispositions to socio-culturally specific conditions of primary socialization (1977, 1990).4 Introducing a crucial new dimension of selfhood to the Alzheimer’s disease discourse is not merely a theoretical exercise; it has important practical implications. An assumed loss of personhood in advanced dementia can negatively influence the care provided to persons with dementia in that it can lead to their treatment as objects rather than as persons worthy of dignity and respect. Thus the quest to broaden our understanding of personhood beyond the narrow confines of consciousness is ultimately in the interest of humanizing our interactions with persons with dementia, and their care. In the final section of this chapter I refer briefly to current research on the implications of embodied selfhood for person-centred dementia care (Kontos & Naglie, 2007a; 2009), research that involves the use of drama as an innovative method for translating this theoretical perspective to front-line dementia care practitioners (Kontos & Naglie, 2006; 2007b).

The Ethnographic Setting Chai Village5 is an Orthodox Jewish long-term care facility that accommodates 472 residents and is located in an urban region of Ontario. The majority of the residents suffer from Alzheimer’s dementia, and a few have vascular dementia. Approximately 80 residents reside on each floor, their average age is 88 years, and the great majority (82 per cent) are women. The study was conducted on one of the floors that provides support for residents suffering from Alzheimer’s dementia. Of the 79 residents on the floor, 13 participated in the study (3 men and 10 women). All were Jewish of East European descent, and their cognitive impairment ranged from moderate to severe.6 Participant observation was conducted over eight months for approximately eight hours per day, three days per week. Detailed and descriptive fieldnotes were recorded during the observation sessions whenever possible and elaborated afterwards. Observation sessions occurred during scheduled program activities, Jewish holiday celebrations, and meal times, and when participants engaged in unscheduled activities such as walking in the hallways or sitting in the living room. All these activities provided a field of experiential 128

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possibilities to observe and explore the ways in which individuals with Alzheimer’s disease inhabit their lifeworld. The following section presents selections of my ethnographic data organized by thematic categories: expressions of preference, creativity, social etiquette, gestural communication, and caring, all of which capture the richness and complexity of selfhood as observed in relationships and communication, social norms and customs, and bodily dispositions, capacities, and practices. Expressions of Preference Time and again, residents of Chai Village express preferences ranging from their seating arrangements, to removing themselves in order to avoid unpleasant situations. Many residents have their “usual” chair in the living-room. Dody, for example, likes to sit in an armchair by a window that looks out onto the parking lot, while Anna, Goodie, Edna, and Florence all like to sit facing the entrance to the living room in order to watch the comings and goings. If their usual spot is occupied by somebody else, the resident waits patiently, ready to claim the chair the moment it becomes free. Dora, who likes to sit by the window that looks out onto the courtyard, was determined to find a way to stay there despite the blinding glare of the sunshine: Dora was seated in her wheelchair at the window in the living room. The bright sun was shining through the window directly into her eyes. She looked to the other side of the window and then around her, as if to see whether anyone was nearby. She then began the trek to the other side. Her arthritic fingers slowly moved the wheels of her chair and her breathing became a bit more laboured as she backed the chair up into a pleasant shaded corner of the room. She resumed her quiet gaze out the window.

Residents are particularly assertive when it comes to meals. They have strong preferences that dictate not just what they eat but how and when they eat it. Some residents, for example, drink only coffee or tea, while others drink coffee in the morning and tea in the afternoon. There is even more variation in how residents drink their coffee or tea. Edna puts spoonfuls of sugar in her coffee and drinks it black. Anna only drinks coffee at breakfast, with milk and sugar, but not before having a cup of hot water first; at lunch and dinner she drinks tea with lemon juice and a teaspoon of sugar. Cereal and eggs are two foods that present the greatest variability in terms of how they are preferred. For example, Dora likes hot oatmeal with milk and sugar, Anna eats her hot oatmeal with salt, and Molly will eat only Cream of Wheat with salt and milk. If Jacob and Florence are served hot cereal they will refuse to eat it, accepting only cold cereal such as Rice Krispies or Corn Flakes. 129

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Eggs are prepared either soft- or hard-boiled. Dody will only eat hers soft-boiled, while Florence, Anna, and Edna will refuse the egg if it is not hard-boiled. After peeling her egg, Anna always digs out the yolk, eating only the white of the egg. Edna will heavily salt her egg, while Ethel prefers pepper on hers. Residents will sometimes find themselves in a situation that is either unpleasant or uncomfortable. Though one might anticipate that with cognitive impairment there would be little, if any, reaction to unpleasantness or discomfort, my study participants remove themselves from the situation: Goodie coughed and was gasping for breath. She called out for a nurse and then said, “I’m not feeling good.” She coughed again and then cupped her bib in her hands and vomited. Frances looked at her and said, “I’ve got to get out. I’ve got to get out.” She stood up and as she hurriedly pushed her walker out of the dining room she repeated, “Out, out, out.” Frances hadn’t yet finished her breakfast. Edna and Ethel were seated on the sofa together in the lounge and Abe was seated in the armchair just next to the sofa. Abe began singing a Yiddish song emphasizing the end of each phrase by singing the last word very loudly. Edna looked at Abe and angrily said, “You can’t do that wherever you want. Go to your room.” Abe looked at her and said, “I sing because I like.” Edna replied, “You can’t do whatever you want. You’ll go to jail.” Perhaps only knowing one verse of the song, Abe repeated the verse but now singing it even louder while looking directly at Edna. Edna stood up and, facing Ethel and me, she said, “I can’t sit here with this imbecile” and promptly left the lounge. Abe yelled “Good” very loudly as Edna left and then he continued to sing the same verse of the Yiddish song over and over.

These examples demonstrate that cognitive impairment does not render individuals oblivious to their environment. They do, however, reveal even more than just an awareness of surroundings: Frances and Edna assert themselves by expressing a strong will with their departures. Creativity There is a rich diversity of social activities at Chai Village. Among the regular weekly events is the creative arts program, a popular activity among the residents that offers ceramics, silk scarf painting, drawing, knitting, crocheting, weaving and beading. While the majority of my study participants frequent the creative arts program, Ethel’s ability to weave in the absence of any cognitive awareness of that ability on her part is a prime example of creativity that persists despite cognitive impairment. As described in the following scene,

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once the canvas is placed in her hand, the needle becomes a familiar instrument that she proceeds to use with proficiency: Sitting next to Edna I admired the pink sweater she was wearing. She looked radiant. As I complimented her about the sweater she looked down at it, perhaps a reminder as to what she was wearing, and announced, “I make all my sweaters.” When she looked up at me she exuded a great sense of pride as she smiled and lifted her chest in confidence. Ethel, who was sitting across from us, was listening to our conversation. Eager to include her I asked if she still needle points. Ethel has numerous colourful canvases that decorate the walls of her room, all by her own hand. Leaning forward in her chair she said “What?” in a high pitch, “I did that before?” Her knit brows and lowered eyelids signalled her confusion. Edna looked at Ethel in utter disbelief and said, “You don’t remember if you worked with your hands?” wildly gesturing a weaving movement. Sinking back into her chair, Ethel shook her head and with a hint of melancholy she said, “I don’t remember.” She then fell into an embarrassed silence as she lowered her head. Several days later I accompanied Ethel to the creative arts program as she was on a list of residents who participate in this activity. The coordinator of the program greeted Ethel with familiarity confirming that she had in fact participated there before. She showed Ethel to the table and brought her a canvas that had already been woven with several rows of yarn. Attached to the top of the canvas was a piece of masking tape with Ethel’s name. Ethel looked at the program coordinator with concern and said, “I don’t know how.” In a kind and understanding voice the program coordinator reassured Ethel by saying, “You don’t have to know but we like you to try.” In great distress Ethel, holding her hands out with her palms facing upwards replied, “I cannot.” As if part of their routine exchange, the program coordinator began weaving a row in demonstration. Ethel watched as though she were observing something foreign. Before reaching the end of the row she encouraged Ethel to take the needle and continue. Then, as if the needle placed between Ethel’s fingers triggered a forgotten ability, she began to weave. The program coordinator seemed pleased and moved on to assist another resident. I stood and watched Ethel with amazement. Holding the canvas in one hand she passed the needle through with the other and in two swift movements the stitch was completed and she began the sequence once again. The rhythm with which she was weaving demonstrated a proficiency that was in striking contrast to her previous proclaimed inability. She very quickly completed the row and without hesitation Ethel took a fresh piece of yarn in her hand, licked one end, and, pinching it between her thumb and index finger, she attempted to thread the needle. The yarn splintered and she was unable to push it through. She licked it once again and

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pinching the end several times she succeeded in passing it through the eye of the needle. She looked up at once, and as our eyes met, she raised the threaded needle triumphantly.

Social Etiquette Residents generally observed the manners prescribed by social convention for interaction with others. For example, Bertha, the study participant with the most severe cognitive impairment, always said “Thank you” when her private sitter wiped food from her mouth or chin. Dody routinely said “Good morning” when she sat down at the dining table for breakfast; Florence in turn said “Good morning”; and Molly smiled and acknowledged Dody with a nod. “Bless you” was always heard from a resident after someone sneezed. Covering one’s mouth when yawning, coughing or belching was a common expression of etiquette. Frances always held her napkin over her mouth when she attempted to remove a stubborn piece of food from her back dentures. Awareness of and respect for such conventions can also be inferred from strong reactions to those who were not well mannered. The following are two notable examples: A Health Care Aide buttered some bread, folded it in half and, as she placed it in Molly’s hand said, “Have some bread.” Molly took a bite and as she chewed, she looked up at Dody, who sat directly across from her. Dody was using a napkin to clean her nostrils –– twisting the corner of the napkin and inserting it into her nostril, turning it several times and then pulling it out. As Dody inspected the napkin after pulling it from her nose, Molly frowned and abruptly put her bread down on the table. She looked at the Health Care Aide with a scrunched up nose, the corners of her lips curved downwards and furrowed brows. It was an expression of disgust. Abe belched very loudly in the dining room. Anna, who was seated just one table over, held her hands over her ears and shouted, “I can’t take that. Tell the messhuggener [Yiddish for crazy person] to stop it.”

Gestural Communication Residents do not communicate with each other with words alone. Gestures –– movements of the body, limbs, hands, head, feet, and legs; facial expressions (smiles and frowns); eye behaviour (blinking, winking, direction and length of gaze, and pupil dilation); and posture –– carry implication and meaning. This gestural resource is employed constantly and everywhere. Gesture plays a significant role in interpersonal communication, often serving the purpose of

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conveying praise, blame, thanks, support, affection, gratitude, disapproval, dislike, sympathy, greeting, farewell, and so forth. Slight head nods, eye and lip movements, chin thrusts, shoulder nods, hand and finger movements, as well as leg and foot shifts are intentional, informative, communicative and interactive. Even the direction of gaze toward another person and a smile will signal another resident’s attention: Bertha and Anna were seated across from one another in the lounge. Suddenly their eyes met and Anna smiled. Anna’s smile triggered a smile in Bertha, making her resonate with animation. The sudden appearance of a smile on Bertha’s face was extraordinary because it transformed her usual expressionless face. Bertha’s smile seemed to reanimate Anna’s fading smile. Several moments ensued of linked smiles back and forth.

Intonation changes, the rise or fall of pitch level, pauses, and postural shifts are laden with meaning. Gestures such as smiles and headshakes, as well as vocalizations such as chuckles and knowing grunts can help to maintain the flow of interaction: Anna and Goodie were seated in the living room together side by side in two armchairs. Anna turned herself in her chair so that she was facing Goodie and began telling her about Abe’s daughters who frequently come to visit: “They always wear those things ... big ... nice.” Goodie knotted up her face, apparently confused about what Anna was trying to convey. She shifted herself slightly so that she was leaning in towards Anna. As Anna continued, “Beautiful, they are so big and nice,” Goodie said “Oh yes,” lifting her eyebrows with her eyes wide open as she followed Anna’s gestural illustration of the large hats Abe’s daughters wore. Anna lowered her hands and said “Beautiful” and Goodie said “mmmhmm” as she sat back in her chair and then replied, “Yes, beautiful.”

Another aspect of social interaction is the exchange of speaking turns. Even when speech is incoherent, in face-to-face interaction residents do not interrupt each other when they vocalize and/or gesticulate back and forth: Abe sat down in the dining room and shouted “Bupalupah.” Anna twisted around in her chair so that she could see Abe (his table was behind hers). Abe’s face opened up. His eyes grew wider, his mouth eased into a broad smile and he shouted “BRRRRRRR!” with a rising and then falling pitch. Anna imitated him shouting back “BRRRRRRR!” following the same change in pitch. Abe then shouted “Bah”

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and paused while looking at Anna. Anna shouted “Shah” and then waited for Abe’s response. Abe shouted “Bah!” and Anna, “Shah,” establishing a repetitious pattern of exchange. Anna eventually turned back around in her chair seated with her back to Abe. Abe shouted “Bupalupah!” as if wanting to initiate another exchange with Anna, but she instead raised her arm above her head and pushed it in a swift downward motion with a sharp flick of her wrist. With this gesture, she terminated their interaction and they each began to eat their breakfast quietly.

Caring There is a great deal of affection and physical contact expressed between residents, as when a resident touches another’s arm very tenderly, offering comfort to ease agitation. The giving of attention through an open and gentle presence, and looking at and listening to each other are additional ways that caring is expressed between residents. Whether residents express their sentiments to each other verbally or otherwise, there is no uncertainty in these expressions or gestures –– they communicate affirmation of one another as human beings. In many instances residents respond to a perceived vulnerability or weakness in another resident, displaying a sensitivity that flows from a sense of compassion. This is highlighted in the following interactions: Abe watched the resident across the table from him as she refused the food that a personal support worker was trying to feed her. Abe began to eat his lunch. As he put a spoonful of soup in his mouth he yelled “AHH-AHM” looking directly at the resident. She looked at Abe and again pushed away the personal support worker’s hand as she tried to feed her soup. Abe yelled “AH-BABABABABA-AHM!” as he put another spoonful of soup in his mouth. Anna and Edna were shouting “shut up!” and “meshuggener” [Yiddish for crazy person], but he continued nonetheless. Abe looked at the personal support worker and asked, “You know why I do that? Say AHM? Because my neighbour,” pointing to the resident across from him, “doesn’t eat.” Ethel and Dora, two women who rarely share each other’s company, found themselves facing each other in the lounge, arm’s length apart, as a result of the staff ’s hurried positioning of their wheelchairs. They looked at each other curiously in silence. Noticing the women, a personal support worker tried to encourage some interaction between them by mentioning to Ethel that Dora too was from Poland. Bonded by common origins Ethel eagerly outstretched her hand to Dora and said “I’m Ethel.” Dora smiled and, reaching out to meet Ethel’s hand, replied “I’m Dora.” As they clutched each other’s hands Dora’s attention was drawn to Ethel’s

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exposed forearm. With her free hand Dora passed her fingers gently over a bluish tattoo of numbers, a testament to the concentration camp experience. A desolate grief passed over Ethel’s face as she pulled her hand back slowly. Both of these women were survivors twice over, once in surviving the ravages of the Holocaust and again in achieving extreme old age, thus outliving peers, family and children. Ethel looked at Dora with genuine empathy, a look that conveyed validation of a mutual world of stories. A connection was made, sealed by their shared experience of being death camp survivors. Maintaining eye contact with Ethel, Dora’s eyes narrowed and she nodded slowly and resolutely, twice, as if to acknowledge their shared fate. While no words were spoken, an intimacy was shared between them through this simple nod. Unannounced, Dora broke the silence singing out a verse of a song in Yiddish, the beloved mama-loshen [Yiddish for Mother tongue] of her childhood: “Vou nemt men a bistle-a mazelz?” [Yiddish for “from where can we take a little luck?”] Ethel instantly dissolved into uncontrollable tears. Dora repeated the verse of the song, with tears of her own now streaming down her face. At the end of the verse she searched into Ethel’s eyes uttering, “Mazel is affila a shtickle broit” [Yiddish for “luck is even a piece of bread”]. Ethel continued to weep, wiping the tears as they poured from her eyes. She took in a deep breath and shook her head gently from side to side and said, “They were doing to us very bad things.” With a firm nod Dora seemed to confirm Ethel’s statement. Dora closed her eyes and, holding her head high, she sang the verse of the song again but this time in a much stronger voice that rose authoritatively from her frail body. Ethel wrung her hands in anguish as she listened. Clutching her chest as if to take her heart in her hand, Ethel said with tears, “It keeps in your heart always the bad times.” Dora immediately reached for Ethel’s hands and, squeezing them tightly, she broke out again in song but this time it was a Yiddish lullaby. Despite its plaintive melody, Dora smiled sweetly at Ethel as she sang. When she finished the lullaby the two women continued to hold hands in solemn silence. There was an indescribable connection between these two wounded lives.

Embodied Selfhood My ethnographic data presented above demonstrate that the residents of Chai Village are aware of their surroundings, engaged with the world, and interacting with purpose and meaning. These aspects of their existence are, I claim, agential powers that are rooted in a pre-reflective level of their being and, in defining the individual as a person, they are indicative of selfhood. The notion of embodied selfhood that I advocate here speaks of a complex interrelationship between primordial and social characteristics of the body, all of which

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resides below the threshold of cognition and is grounded in the pre-reflective level of experience, manifesting itself primarily in corporeal ways. More specifically, it is my claim that the selfhood that resides in the pre-reflective body has two sources. My analysis begins with the first source: the primordial level of experience where selfhood emanates from the body’s power of natural expression, manifesting in the body’s inherent ability to apprehend and convey meaning. Examples of basic bodily movements and sociability, drawn from my ethnographic data presented here, will be analyzed in reference to Merleau-Ponty’s elucidation of the primordial significance of the body, which I claim provides the corporeal foundation of selfhood. At the primordial level, selfhood should be understood as non-representational intentionality, and, in this sense, selfhood is tantamount to the existential expressiveness of the body that emerges from our active and responsive propensity toward the world. I then turn my analysis to the second source of selfhood: the socio-cultural dimension of the pre-reflective body. I shall again refer to my ethnographic data, focusing on instances that exemplify the mastery that the residents of Chai Village have of various social practices, as well as how such practices are markers underlying class distinctions, all of which I argue are socio-cultural manifestations of selfhood. Here, Bourdieu’s sociological approach to understanding the embodiment of social structures informs my analysis of the socio-cultural sources of embodied selfhood. This entails a shift from the primordial to a social level of existence because socially and culturally acquired behavioural propensities do not originate in the body. The Primordial Depths of Embodied Selfhood Basic Bodily Movement Central to Merleau-Ponty’s major work, Phenomenology of Perception (1962), is his argument that embodied consciousness (to which he refers interchangeably as “embodied significance” and “basic intentionality”) is a fundamental level of existence that does not involve cognitive consciousness. He argues that the pre-reflective body is itself intentional in the sense that it is directed toward the world without requiring reflective understanding of the manner in which it is directed (1962: 213, 233). In his words (1964: 5), “a system of possible movements ... radiates from us to our environment,” giving us at every moment a practical and implicit hold on our body, a hold that situates us as subjects perceptually, linguistically, and through motor activity. In this “system of possible movements,” the body possesses, according to Merleau-Ponty, a co-ordinating power in relation to itself, through what he refers to as the “primary perceptual” level that is prior to explicit intellection. He cites an 136

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example of the pre-reflective nature of the coordination of visual, tactile, and motor aspects of our body: If I am sitting at my table and I want to reach the telephone, the movement of my hand towards it, the straightening of the upper part of the body, the tautening of the leg muscles are super-imposed on each other. I desire a certain result and the relevant tasks are spontaneously distributed amongst the appropriate segments. (1962: 149)

Merleau-Ponty argues that no aspect of this existential knowledge of coordination is reflective or discursive (i.e., learned). Hence, as he notes, in their first attempts at reaching for an object, children look not at their hand but at the object, the implication being that the various parts of the body are known to us through their functionality, without their coordination ever having to be learned (1962: 149). Thus intentionality “does not come into being through the transparency of any [mental] consciousness, but takes for granted all the latent knowledge of itself that ... [our] body possesses” (1962: 233). This latent knowledge is a field of possible actions and movements that the body “knows” how to perform. Basic bodily movement is not a cognitive operation; it is not intellection infused throughout the body, but rather a kind of knowledge that does not derive from or rely upon cognition. To further illustrate the body’s pre-reflective nature, Merleau-Ponty cites the example of one who knows how to type without having to think out the location of each letter on the keyboard (1962: 233). As he explains, though the typist does not know where the keys are in a reflective sense, in order to make any attempt to provide a reflective and discursive account of the keyboard layout, the typist must imagine himself/herself typing in order to visualize the appropriate keys. Knowledge of typing, Merleau-Ponty argues, is in the hands and manifests itself only when bodily effort is made and cannot be articulated in detachment from that effort. Undoubtedly typing, unlike Merleau-Ponty’s example of reaching for the telephone, is a learned activity, albeit one that involves a practical kind of learning. His intention in using the example of typing is to disclose the primordial capacity of the body to pre-reflectively perform, a capacity that is itself never learned, and that is equally present in both the example of typing and the example of reaching for the telephone. In other words, Merleau-Ponty wishes to argue that this primordial capacity of the body is operative in the same way, irrespective of whether learning is involved. Turning to my ethnographic data, it can be seen in the example of Ethel’s weaving that when the needle and thread were placed between her thumb and the index finger, she did not need to look for her hands or her fingers when she 137

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began to weave, because they are not objects to be discovered in objective space. The task to be performed immediately elicited the necessary movements from Ethel as she took hold of the objects, assimilating their structure into her body, without any calculation on her part. Ethel’s example makes apparent the spontaneous method of perception, what Merleau-Ponty describes as a kind of living system of meanings that makes the concrete essence of the object immediately recognizable. As soon as Ethel took hold of the needle and thread, these objects meant something, without the meaning having to be established through cognition. In fact, in the absence of practical involvement, weaving did not register any significance for Ethel, as evidenced by her repeated protests of “I don’t know how.” Ethel’s ability to weave is completely dependent upon her having incorporated the meaning of the needle and thread and the rhythm of weaving into her bodily schema, just as the typist incorporates the keyboard space into his/her bodily schema. At the most fundamental and primordial level of experience, I understand selfhood as inhering in what Merleau-Ponty describes as corporeal and nonreflective intentionality and, as such, it is my claim that selfhood emanates from the body’s power of natural expression, manifesting in the actual movements of the body. When observing the residents of Chai Village –– such as when Dora held Ethel’s hands and sang her a lullaby to comfort her, when Anna peeled for another resident a boiled egg at breakfast, or when Dody cleaned her nostrils with a twisted corner of a napkin –– they would intend a certain outcome by their actions, and the enabling actions were spontaneously distributed among the appropriate parts of their bodies. In fact, in all of the thematic categories and subcategories where some degree of physical movement is involved, we can see that the movements of the residents are perfectly suited to the exigencies of the circumstances without having to think of how to make them or to articulate reflectively the principles upon which their actions are based. Despite their cognitive impairment, the residents were not launching their bodies into blind attempts to perform an action, thus demonstrating Merleau-Ponty’s argument that the various parts of the body are known to us through their functionality without their coordination ever having to be learned. Sociability Just as primordial perception does not presuppose thought, engaging in mutuality with others is not primarily a matter of connecting with the other cognitively. This is because engaging with others is dependent upon the body’s existence as a unity that itself possesses agency. This unity, which I argue is the foundation of selfhood, is integral to, and visibly manifested in, the successful accomplishment of social interaction. 138

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Chai Village residents are not operating in their own respective isolated worlds. On the contrary, as we saw in all of the thematic categories above, they share a common world, communicating with one another. Merleau-Ponty (1962: 183) argues that in the context of interaction, words assume a gestural significance to the extent that the conceptual meaning of words in speech is formed by a kind of deduction from this gestural meaning. Thus, MerleauPonty detects certain corporeal tendencies or, more specifically, the perspectival unity of corporeal schema, underscoring the primacy of embodiment in speech itself. I argue further that because selfhood resides in corporeality, gestures that accompany speech provide further opportunity for the exploration of bodily manifestations of selfhood. Merleau-Ponty’s intention is to restore to the act of speaking its corporeality through an analysis of the embodiment of speech in the lifeworld. As Kisiel (1974: 228–29) so aptly suggests in his discussion of Merleau-Ponty’s philosophy, there is a “physiognomy beneath the dictionary sense of words,” a “generative grammar” that finds its locus in bodily behaviour: the expression of the face, the play of the eyes, the movement of other parts of the body and the tone of voice. I take this generative grammar to be operative on the same level as the primacy of perception, and thus it is primordial. Merleau-Ponty’s argument that speech is a gestural system is evident when we consider instances where speech is incoherent and meaningless, yet in such instances meaning does emerge from the gestural body. In such instances we are still able to communicate with each other by virtue of the expressive dimensions of the gesticulating body, which are fundamental to communication in human interaction. As we saw with the example of Anna and Abe in their verbal exchange in the dining room, despite their speech being incoherent and devoid of meaning, there was a smooth and appropriate alternating pattern of vocalizing and gesticulating back and forth. With only “Bah,” “Shah,” “BRRRRRR,” and “Bupalupah” uttered, Anna and Abe were able to communicate without any recourse to intellectual interpretation. This is because selfhood manifested itself in the fit (i.e., the meaningful relationship) between the rise and fall of their pitch level, pauses, and postural shifts. Selfhood was also disclosed in their gestures, which had a rhythmic flow and fluent form, rather than appearing as a mechanical composite of bodily movements. This illustrates Merleau-Ponty’s argument (1964: 7) that communication dwells in corporeality or, more specifically, in the body’s capability of gesture. Because of Abe’s speech impairment and Anna’s mimicking of him in jest, the force of their speech acts derives not from their semantic content but rather the meanings that their bodies directly index. Communication is thus a continuation of the corporeal schemata. As such, it is my claim that selfhood 139

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persists in and through the body’s power of natural expression, that is, the body’s inherent ability to apprehend and convey meaning. This is most apparent in the silent exchange of expressive gesture. For example, the face can be a potent stimulus, as in the case of Bertha and Anna. After several moments of being seated in the lounge across from one another, Bertha and Anna found themselves in a mutual gaze, and then Anna smiled. Bertha watched intensely the movements of each facial feature as the smile appeared on Anna’s face: the tautness of Anna’s skin changed as the curve of her cheeks and the corner of her lips rose, and her mouth opened. Bertha, taking in the entire transformation, was affected immediately. As if Anna’s smile had reached across the room and touched Bertha, it triggered a smile in Bertha, making her resonate with animation. Bertha’s smile in turn reanimated Anna’s fading smile. During the several moments that ensued of linked smiles back and forth, an invisible current of vitality passed between the two women, reflecting their selfhood so powerfully evoked by their mutual smiles. This cannot be mistaken for an example of pure imitation, for Bertha’s obvious delight was manifested in her eyes brightening and her mouth opening wider and wider in synchronization with the mounting of inner feeling. Neither can Ethel’s response be reduced to biological determinism. MerleauPonty argues that there is no direct correspondence between our anatomical body and specific gestures, in that two individuals who have identical emotions will not necessarily produce identical emotional expressions (1962: 189). Similarly we can free selfhood from biological determinism by conceptualizing it as one’s unique expression of emotion. This is apparent when, for example, we consider that the behaviour associated with sadness is not the same with Bertha, who makes loud sobbing sounds when she cries, and Ethel, who is relatively silent when she sheds tears. Goodie expresses anger by walking away from the situation, while Frances curses, Jacob shakes his fist in the air and becomes red in the face, and Anna makes a simple and dismissive sweep of the hand. Likewise there can be a variation in responses to music, such as when Anna and Florence clap, and Molly taps her feet while conducting the music. Thus, while selfhood is undeniably contingent upon the body’s organization, an even greater contingency rests upon the manner in which we experience and respond to a given situation. What the above examples of sociability reveal is that the notion of embodied selfhood transcends the idea of the body as a mere biological entity. This raises the issue of the particularities of selfhood. Selfhood resides in the existential expressiveness of the body that emerges from our capacity for acting, the know-how belonging to an individual whose primary relation to the environment is that of pre-reflective, active, and prac140

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tical involvement. However, the primordial capacity of the body does not exhaust embodied selfhood; there is a certain style or content to bodily movements and gestures, the source of which cannot be attributed solely to the primordial body. Bourdieu’s concept of habitus (1977; 1990) is pertinent here because it addresses the socio-cultural sources of bodily practices. Socially and culturally acquired behavioural propensities do not originate in the body, yet Bourdieu clearly argues that the acquisition of such propensities entails learning at a pre-reflective level. Bourdieu’s sociological approach to understanding the embodiment of social structures theoretically informs my analysis of the socio-cultural sources of embodied selfhood.

Habitus Bourdieu argues that the conditioning associated with membership in a particular social class tends, through the relationship to one’s own body, to instill in individuals dispositions and generative schemes for being and perceiving, what he terms habitus. Bodily expressions (e.g., the way we walk and the way we eat) stress the durability of the effects of socialization through cumulative exposure to certain social conditions associated with membership in a particular social class. Bourdieu defines a disposition as “a way of being, a habitual state ... a tendency, propensity, or inclination” (1977: 214n1). Dispositions are corporeal in that they are embodied in human beings and converted into motor schemes and body automatisms, which, in practice, materialize as postures, gestures, and movements (1977: 93–94; 1990: 69). Habitus consists in dispositions and forms of know-how and competence, all of which function below the threshold of consciousness, enacted at a prereflective level. As Bourdieu states, “the schemes of the habitus, the primary forms of classification, owe their specific efficacy to the fact that they function below the level of consciousness and language, beyond the reach of introspective scrutiny or control by the will” (1984: 466). Wacquant (1992: 20), perhaps Bourdieu’s best commentator, has noted that Bourdieu is clearly drawing on Merleau-Ponty’s idea of the body as the source of practical intentionality and of inter-subjective meaning grounded in the pre-objective level of experience. The body is treated as a “generative, creative capacity to understand” –– as a kind of corporeal awareness, a practical reason existing primarily in corporeal ways. However, with the concept of habitus, Bourdieu investigates practice in the context of the social genesis of its conditions of operation. Thus, his exploration of competence, know-how, skill, and disposition moves him into the socio-cultural horizon where bodies assume their significance.7 It is my argument that selfhood, in addition to having a primordial source, consists in the dispositions and generative schemes of habitus, and therefore, 141

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in the same way that dispositions are embodied and materialize in practice, selfhood is also embodied and is manifested in a socio-culturally specific way of being-in-the-world. Thus embodied selfhood owes its coherence not only to the foundational unity of the body, but also to the embodiment of culturespecific conditions of primary socialization. This is apparent when we consider the coherence and consistency in the residents’ mastery of their social world, and in the ways in which the residents embraced their daily routines and engaged in specific activities. For example, there was an observable coherence and capability regarding the participants’ management of the social demands of eating in the dining room. They were immediately familiar with the proper use of utensils, napkins, and condiments. Furthermore, when the residents sat at the table and ate their meals, they socialized with one another and for the most part respected table etiquette. The steadiness and persistence of the rhythm of the daily interactions owed their regularity and predictability to the social history and culture that produced the dispositions of the residents and which, following the logic of habitus, continued to harmonize their behaviour without any deliberation or conscious reference to a norm, and without conscious coordination (Bourdieu, 1990: 58–60). To elaborate Bourdieu’s argument, I suggest that the determinations attached to our primary socialization and cultural environment give selfhood its socio-cultural specificity by virtue of being embodied and materialized in our habitual state, tendencies, and inclinations to act in a particular way. In this respect, the quotidian interactions at Chai Village were regulated, not through the residents’ conscious following of external rules, but because the taken-forgranted, pre-reflective nature of their practices flowed from embodied selfhood that itself has internalized this common code of etiquette. Mastery of a common code is evident not only where there is a regularity of social practice, but also when an incident occurs that deviates or contradicts the customary code, as when a resident who failed to adhere to the proper etiquette met with the disapproval of the other residents. For example, when Abe belched loudly in the dining room and Anna held her hands over her ears and yelled “tell the messhuggener to stop it,” it was clear that Abe’s behaviour had offended. Anna’s reaction can be interpreted as a negative sanction because Abe’s behaviour departed from what she had internalized as appropriate behaviour. As Bourdieu argues, “habitus tends to favour experiences likely to reinforce it ... to protect itself from crises and critical challenges by providing itself with a milieu to which it is as pre-adapted as possible” (1990: 61; emphasis in original). A similar disjunction between habitus and objective conditions occurred when Molly furrowed her brows and abruptly stopped eating when she saw Dody using the twisted corner of a napkin to clean her nostrils. 142

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The behaviour of Abe and Dody was deemed improper and intolerable, which attested to the persistence of embodied selfhood. Put simply, behaviour is negatively sanctioned when it offends the sensibility of one’s selfhood. Selfhood as a Mark of Class Distinction The reactions to the behaviour of Abe and Dody illustrated in the above examples raise the issue of the social-class distinctions of selfhood. There is distinctiveness among my study participants which suggests that an important dimension of selfhood is its function as a marker of class. There is an important connection for Bourdieu between the social determinations attached to specific positions in social space and the body and its dispositions. This is why social practices for Bourdieu signify class distinctions. Because I maintain that practices are manifestations of selfhood, I elaborate Bourdieu’s argument by suggesting that selfhood too has the mark of class distinction. The relevance of this for my discussion of the coherence of selfhood is that for each of my study participants, class distinction is manifested such that there is congruence between one’s style of dress, social etiquette, and physical manners. There is coherence in the way in which my study participants manifest their class. The distinctiveness among my study participants is evident if we consider that Dora’s polyester dresses and plastic shoes would never be confused with the elegant silk blouses, slacks, and low pumps favoured by Dody. Anna’s oversized and tarnished Star of David is in marked contrast to the refined, pure white pearls that adorn Molly. The neatness and formality of Jacob’s corduroy jacket and cap can be juxtaposed with the simplicity of the casual oversized cardigans and loose-fitting flannel shirts always worn by Abe.8 However, it is not only jewellery and garments alone that distinguish residents from one another; differences can also be gleaned through social etiquette and manners. Edna’s aggressiveness, boastfulness, and immodesty are characteristics that are in marked contrast to Dody’s propriety and modesty and to her general objections to the indecorous and brazen manner of Edna. When eating, Goodie is prone to putting large portions of food into her mouth at a time, using her hands as much as her utensils, and will invariably drop food down her front. Molly delicately puts food between her lips with reservation and restraint, always being careful not to drip on herself. There is an excessive swing of the hips that comes from Edna’s heavy stride, and even when seated there is a constant movement of her hands and feet. In contrast, Molly’s walking steps are delicate, and when she is seated her legs are always crossed with her hands clasped in her lap. Molly’s delicate manner is also apparent when she uses a tissue, softly wiping the tip of her nose, while Edna, 143

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in contrast, blows sharply and loudly, covering her entire nose and clenching it tightly with the tissue. In addition to there being a class distinction among my study participants, each participant’s manifestations of selfhood disclose a consistency such that all manifestations are congruous with, and representative of, the particular social class of the individual. This is apparent when we consider, for example, the connection between Molly’s wearing her pure white pearls, crossing her legs and clasping her hands in her lap when seated, delicately placing food between her lips with reservation and restraint, and finally, politely using her tissue to wipe the tip of her nose. There is a similar connection between Edna’s excessive swinging of her hips while walking, aggressively salting her food, loudly blowing her nose while covering her entire face with a tissue, and her undistinguished style of dress, demonstrated by her loose-fitting sweaters and dated costume jewellery.

An Embodied Selfhood Approach to Dementia Care Practice In traditional approaches to caregiving, the principles of practice are largely informed by the assumption that dementia is a disease that “eradicates the essence of the person” (Dalziel, 1994). Assumptions about the diminishing humanness of individuals with Alzheimer’s disease foster interactions that depersonalize the sufferer, creating what Kitwood has aptly described as a “cancer of the interpersonal environment” (1998: 29). Kitwood is not implying that there are malicious or deliberate intentions on the part of the caregivers to mistreat or neglect residents with dementia. On the contrary, interactions that dehumanize and demoralize the person with dementia can be a consequence of a deeply embedded cultural assumption that with advancing dementia there is a corresponding loss of selfhood (Davis 2004; Fontana & Smith, 1989). Such an assumption implies that there is no affront to human dignity in treating those who are cognitively impaired as though they are unable to experience humiliation. This can negatively influence the care provided to individuals with dementia in that they are treated as objects rather than as persons worthy of dignity and respect. If we are to move forward in developing innovative dementia care practices, we must develop a new paradigm that respects individuals with Alzheimer’s disease as human beings deserving of dignity and worth (Keane, 1994). Though the need for person-centred approaches to dementia care is widely advocated (Kitwood, 1997; Jonas-Simpson, 2001; Tappen et al., 1999), until selfhood is understood in its full corporeal complexity, dementia care will fail to fully acknowledge the selfhood of those living with Alzheimer’s dis-

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ease. The consequences of overlooking embodied selfhood are most significant in the context of dementia care, because, as I have argued in this chapter, in cases of cognitive impairment the body becomes the primary means of selfexpression. My intention to broaden the discourse on selfhood in Alzheimer’s disease to include the importance of the body is part of my larger objective to humanize the practice of dementia care. Faced with the challenge of conveying the notion of embodied selfhood to front-line dementia-care practitioners of diverse disciplinary and clinical backgrounds I turned to drama as a novel method of knowledge translation (Kontos & Naglie, 2006). Ethnographers have long recognized the irony that even though ethnographic fieldwork privileges practical, personal, and participatory experience in the field, when translated into published ethnographies the interpersonal contingencies and engagement of fieldwork are smoothed into an expository prose of abstract theory and analysis (Clifford, 1988). The limits of ethnographic writing –– what can be termed “textualism” –– are even more pronounced in the paradigm of embodiment where the existential immediacy of the body (perceptual experience, modes of presence, and engagement in the world) becomes an objectified abstraction when subjugated to the semantic domain of written words (Csordas, 1994). Ethnographers and other qualitative scholars are challenged to find alternative strategies for knowledge generation and representation that redress the limits of textualism. Ethnoperformance (Paget, 1993), also referred to as ethnodrama (Mienczakowski, 2001) and the anthropology of performance (Turner, 1986), is a genre within ethnography that is appealing to a new generation of scholars committed not just to describing the world but also to changing it (Denzin, 2000). Research-based theatre has enormous emancipatory and educational potential to foster critical awareness, engage audiences to envision new possibilities, and incite action (Mienczakowski, 2001). In collaboration with the artistic director of a theatre school and creative drama centre that has a demonstrated history of developing socially relevant dramas for public presentation, I developed Expressions of Personhood in Alzheimer’s (Kontos & Naglie, 2006). This is a research-based theatre production that not only represents embodied expressions of selfhood in Alzheimer’s disease, but also critically exposes depersonalizing tendencies of some caregiving practices that are a consequence of either an assumed loss of selfhood that is widely associated with the cognitive deficiencies that lie at the core of dementia, or a narrow perspective on selfhood that does not account for the role that the body plays in its manifestation. The dramatic portrayal of interactions between staff and individuals with Alzheimer’s disease opens a space

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for practitioners to see the humanity of persons with dementia, and for envisioning the prospect of a truly humanistic approach to dementia care practice. The production itself consists of five separate vignettes, which are thematically connected in that all feature bodily expressions of selfhood as observed in my ethnographic research. The production is faithful to these “in life” scenes precisely because they so powerfully render visible how selfhood is expressed through the body: through preference, creativity, social etiquette, caring, and gesture despite even severe cognitive impairment (Kontos & Naglie, 2006). These observed occurrences are re-enacted in the production in order to offer insight and stimulate discussion among practitioners in a series of focus-group discussions about the breadth and importance of nonverbal communication for self-expression by persons with severe cognitive impairment. Data from self-administered post-performance surveys suggest that there was a perceived relevance of the production to practitioners’ own practice, an increased understanding gained from attending the production, and a strong endorsement of the use of drama as an educational tool for disseminating information about an embodied selfhood approach to person-centred dementia care (Kontos & Naglie, 2007b).9 The focus group findings suggest important potential implications of practitioners integrating an understanding of bodily expressions of selfhood into their clinical practice: it may reduce “aberrant” behaviour in the absence of pharmaceutical therapies, thereby improving the efficiency of practice and the caregiving interaction for both care provider and recipient (Kontos & Naglie, 2007a). These findings underscore the need for an empirical exploration of the outcomes of an embodied selfhood approach to person-centred dementia care.

Conclusion Quality of care in residential and nursing homes is in need of radical improvement (Ballard et al., 2001). When we consider the possibilities that are opened up by recognizing the importance of the body for self-expression, it is clear that we can no longer afford to ignore this vital source of meaning and continuity that persists despite even severe cognitive impairment, but that has largely gone unrecognized. Focusing on the body as a medium of expression and knowing creates a very different picture of dementia than the image of a “death that leaves the body behind” (Keane, 1994). Given the significance of bodily expressions of personhood, particularly in the context of severe cognitive impairment, their recognition and support should be a priority in the management of persons with dementia. Using drama to foster awareness and

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deeper understanding of the ways in which persons with dementia remain connected to the world has enormous potential to induce change. Dramatic performance holds promise as a strategy to facilitate a new ethic of dementia care that respects individuals with Alzheimer’s disease as embodied beings deserving of dignity and worth.

Acknowledgements This chapter is largely based on my doctoral research undertaken in the Department of Public Health Sciences, University of Toronto, during which time I was supported by a Doctoral Fellowship from the Alzheimer Society of Canada and the Institute of Aging, Canadian Institutes of Health Research (CIHR, Award #02–07, 2002–2004), and the Social Sciences and Humanities Research Council of Canada (Award #754–99–2175, 1999–2002). I wish to express my thanks to Ann Robertson, Stephen Katz, and Gail Mitchell whose constructive and insightful comments were invaluable to my thesis research. The development and evaluation of the research-based theatre production, Expressions of Personhood in Alzheimer’s, was part of a study funded by the Collaborative Research Program: Rehabilitation & Long-Term Care, the Canadian Nurses Foundation, and the Nursing Care Partnership. During the tenure of this grant I was supported by a Post-doctoral Fellowship from the CIHR Fellowship Program (MFE-70433, 2004–2007), and the Health Care, Technology, & Place (HCTP) CIHR Strategic Research & Training Program (FRN: STP 53911, 2004–2007, supported by CIHR Institutes of Health Services and Policy Research, Gender and Health, and Knowledge Translation Secretariat). I am currently supported by a CIHR New Investigator Award (MSH-87726, 2009–2014). Toronto Rehabilitation Institute receives funding under the Provincial Rehabilitation Research Program from the Ministry of Health and Long-Term Care in Ontario. The views expressed here do not necessarily reflect those of my supporters or funders.

Notes 1. To ensure that the identity of my study participants is protected, I have used pseudonyms. 2. My perspective should by no means minimize the importance of the humanistic pursuits of professionals and caregivers committed to patients and residents with the disease, nor diminish the challenges faced by those who live with this illness. 3. Clearly Locke and Descartes are not part of the same historical conjuncture; however,

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4.

5.

6.

7.

8.

9.

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I discuss them within the same critical space in order to philosophically contextualize the genesis and development of Western perspectives on personhood. It is important to bear in mind that though my theoretical articulation of embodied selfhood takes its bearings from Merleau-Ponty’s and Bourdieu’s theoretical perspectives on the body, it emerges fully by my extending their thought through analysis of my ethnographic data. To ensure that the identity of this home for the aged is protected, I have used a pseudonym: the word Chai (‫ )יח‬means “living” in Hebrew, and is related to Chaim meaning “life.” Cognitive impairment was measured with the Mini Mental State Examination (MMSE), a widely used method for assessing cognitive mental status (Folstein, Folstein & McHugh, 1975). Among the study participants, the mean MMSE score was 11.3, the range was 1–15 (mild 19–24, moderate 10–18, severe 0–10) , and 39 per cent were severely cognitively impaired. Because of cognitive impairment, informed consent to participate was provided by proxy. The primordial capacity of the body to seize upon and transform the perceptible into something meaningful is a dimension of agency that is missing from the repertoire of habitus, an omission based on Bourdieu’s contention that agency is confined exclusively to the realm of the social. However, because non-representational intentionality is an agential power fundamental to human existential being, I argue that the pre-objective level of human existence is composed simultaneously of the embodied sedimentation of social structure and primordial perceptual significance. I have argued elsewhere (Kontos, 2006) that Merleau-Ponty’s notion of non-representational intentionality can be thought of as providing the foundational structure for habitus, a structure that itself resides in the primacy of perception, and thus not only precedes habitus but is always actively present in the manifestation of the dispositions of habitus. Though clothing for the residents of Chai Village is purchased by their relatives, new garments were always in keeping with the style of the residents’ wardrobe. In other words, purchases of new clothing made by spouses, children or grandchildren of my study participants were always a close variation of the items that were to be replaced. Hence, even in an institutional setting, dress continues to reflect class distinctions among the residents, distinctions that were established prior to their taking up residence in Chai Village. While I do subscribe to the use of the arts for knowledge translation, this does not preclude the importance of tailoring interventions to the settings in which change is desired (Davis, 2006; Estabrooks et al., 2006; Poland et al., 2005; Poland, Green & Rootman, 2000; Mullen, Evans, et al., 1995). Settings are replete with existing interests, infrastructures, procedures, and associations, all of which are implicated

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in the successes and/or failure of research-utilization initiatives (Kontos & Poland, 2009; Hogle, 1995; Mykhalovskiy & Weir, 2004; Timmermans & Angell, 2001; Dobrow, Goel & Upshur, 2004). Drama is an important method for bringing evidence-based innovations to potential adopters, but because of the complexity of bridging the research–practice gap, drama alone should not be expected to achieve practical change.

References Ballard, C., Fossey, J., Chithramohan, R., Howard, R., Burns, A., Thompson, P., Tadros, G., and Fairbairn, A. 2001. “Quality of Care in Private Sector and NHS Facilities for People with Dementia: cross sectional survey.” British Medical Journal 323 (7310): 426–27. Ballenger, J.F. 2006. Self, Senility, and Alzheimer’s Disease in Modern America: a history. Baltimore: Johns Hopkins University Press. Bourdieu, P. 1990. The Logic of Practice. Trans. R. Nice. Cambridge: Polity Press. Bourdieu, P. 1984. Distinction: a social critique of the judgement of taste. Trans. R. Nice. Cambridge, MA: Harvard University Press. Bourdieu, P. 1977. Outline of a Theory of Practice. Trans. R. Nice. Cambridge: Cambridge University Press. Clifford, J. 1988. Predicament of Culture. Cambridge, MA: Harvard University Press. Csordas, T. 1994. “Introduction: The Body as Representation and Being-in-the-World.” Pp. 1–24 in T. Csordas (Ed.), Embodiment and Experience: the existential ground of culture and self. Cambridge: Cambridge University Press. Dalziel, W.B. 1994. “Dementia: no longer the silent epidemic.” Canadian Medical Association Journal 151 (10): 1407–09. Davis, D. 2006. “Continuing Education, Guideline Implementation, and the Emerging Disciplinary Field of Knowledge Translation.” The Journal of Continuing Education in the Health Professions 26: 5–12. Davis, D. 2004. “Dementia: sociological and philosophical constructions.” Social Science and Medicine 58: 369–78. Denzin, N. 2000. “Aesthetics and the Practices of Qualitative Inquiry.” Qualitative Inquiry 6 (2): 256–65. Dobrow, M.J., Goel, V., and Upshur, R.E.G. 2004. “Evidence-Based Health Policy: context and utilisation.” Social Science and Medicine 58: 207–17. Estabrooks, C.A., Thompson, D.S., Lovely, J.E., and Hofmeyer, A. 2006. “A Guide to Knowledge Translation Theory.” The Journal of Continuing Education in the Health Professions 26: 25–36.

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Folstein, M., Folstein, S., and McHugh, P. 1975. “Mini-Mental State: a practical method for grading the cognitive state of patients for the clinician.” Journal of Psychiatric Research 12: 196–98. Fontana, A., and Smith, R.W. 1989. “Alzheimer’s Disease Victims: the ‘unbecoming’ of self and the normalization of competence.” Sociological Perspectives 32 (1): 35–46. Herskovitz, E. 1995. “Struggling over Subjectivity: debates about the ‘self ’ and Alzheimer’s disease.” Medical Anthropology Quarterly 9 (2): 146–64. Hogle, L.F. 1995. “Standardization across Non-Standard Domains: the case of organ procurement.” Science, Technology & Human Values 20 (4): 482–500. Hughes, J.C., Louw, S.J., and Sabat, S.R. (Eds.). 2006. Dementia: Mind, Meaning, and the Person. New York: Oxford University Press. Jonas-Simpson, C. 2001. “From Silence to Voice: knowledge, values, and beliefs guiding healthcare practices with persons living with dementia.” Nursing Science Quarterly 14 (4): 304–10. Keane, W.L. 1994. “The Patient’s Perspective: the Alzheimer’s Association.” Alzheimer Disease and Associated Disorders 8 (Suppl. 3): 151–55. Kisiel, T. 1974. “Aphasiology, Phenomenology of Perception and the Shades of Structuralism.” Pp. 201–33 in E. Straus (Ed.), Language and Language Disturbances. New York: Duquesne University Press. Kitwood, T. 1998. “Toward a Theory of Dementia Care: ethics and interaction.” Journal of Clinical Ethics 9 (1): 23–34. Kitwood, T. 1997. Dementia Reconsidered: the person comes first. Buckingham: Open University Press. Kontos, P. 2006. “Habitus: an incomplete account of human agency.” American Journal of Semiotics 22: 67–83. Kontos, P. 2005. “Embodied Selfhood in Alzheimer’s Disease: rethinking person-centred care.” Dementia: The International Journal of Social Research and Practice 4 (4): 553–70. Kontos, P. 2004. “Ethnographic Reflections on Selfhood, Embodiment and Alzheimer’s Disease.” Ageing and Society 24: 829–49. Kontos, P. 2003. “‘The Painterly Hand’: embodied consciousness and Alzheimer’s disease.” Journal of Aging Studies 17: 151–70. Kontos, P., & Naglie, G. 2009. “Tacit Knowledge of Caring and Embodied Selfhood.” Sociology of Health and Illness, 31 (5): 688–704. Kontos, P., and Naglie, G. 2007a. “Bridging Theory and Practice: imagination, the body, and person-centred dementia care.” Dementia: The International Journal of Social Research and Practice 6 (4): 549–69. Kontos, P., and Naglie, G. 2007b. “‘Expressions of Personhood in Alzheimer’s Disease’: an evaluation of research-based theatre as a pedagogical tool.” Qualitative Health Research 17 (6): 799–811. 150

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Kontos, P., and Naglie, G. 2006. “‘Expressions of Personhood in Alzheimer’s’: moving from ethnographic text to performing ethnography.” Qualitative Research 6 (3): 301–17. Kontos, P., and Poland, B. 2009. Mapping New Theoretical and Methodological Terrain for Knowledge Translation: contributions from critical realism and the arts. Implementation Science, 4 (1). . Locke, J. 1700/1975. “Of Identity and Diversity.” Pp. 328–48 in P.H. Nidditch (Ed.), An Essay Concerning Human Understanding. Oxford: Clarendon Press. Merleau-Ponty, M. 1964. “An Unpublished Text by Maurice Merleau-Ponty: a prospectus of his work.” Pp. 3–11 in J. Edie (Ed.), The Primacy of Perception. Evanston, IL: Northwestern University Press. Merleau-Ponty, M. 1962. Phenomenology of Perception. Trans. C. Smith. London: Routledge & Kegan Paul. Mienczakowski, J. 2001. “Ethnodrama: performed research –– limitations and potential.” Pp. 468–76 in P. Atkinson, A. Coffey, S. Delamont, J. Lofland and J. Lofland (Eds.), Handbook of Ethnography. London: Sage. Mullen, P.D., Evans, D., et al. 1995. “Settings as an Important Dimension in Health Education/Promotion Policy, Programs, and Research.” Health Education Quarterly 22 (3): 329–45. Mykhalovskiy, E., and Weir, L. 2004. “The Problem of Evidence-Based Medicine: directions for social science.” Social Science and Medicine 59: 1059–69. Paget, M. 1993. A Complex Sorrow: reflections on cancer and an abbreviated life. Philadelphia: Temple University Press. Poland, B., Lehoux, P., Holmes, D., and Andrews, G. 2005. “How Place Matters: unpacking technology and power in health and social care.” Health and Social Care in the Community 13 (2): 170–80. Poland, B.D., Green, L.W., and Rootman, I. 2000. Settings for Health Promotion: linking theory and practice. Thousand Oaks, CA: Sage. Post, S. 1995. The Moral Challenge of Alzheimer Disease. Baltimore: Johns Hopkins University Press. Ronch, J. 1996. “Mourning and Grief in Late Life Alzheimer’s Dementia: revisiting the vanishing self.” American Journal of Alzheimer’s Disease 11 (4): 25–28. Sabat, S., and Harré, R. 1992. “The Construction and Deconstruction of Self in Alzheimer’s Disease.” Ageing and Society 12: 443–61. Tappen, R.M., Williams, C., Fishman, S., and Touhy, T. 1999. “Persistence of Self in Advanced Alzheimer’s Disease.” Image: Journal of Nursing Scholarship 31 (2): 121–25. Taylor, C. 1989. Sources of the Self: the making of the modern identity. Cambridge, MA: Harvard University Press. 151

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Timmermans, S., and Angell, A. 2001. “Evidence-Based Medicine, Clinical Uncertainty, and Learning to Doctor.” Journal of Health and Social Behavior 42 (4): 342–59. Turner, V. 1986. The Anthropology of Performance. New York: Performing Arts Journal Publications. Wacquant, L. 1992. “Toward a Social Praxeology: the structure and logic of Bourdieu’s sociology.” Pp. 2–59 in P. Bourdieu and L. Wacquant (Eds.), An Invitation to Reflexive Sociology. Chicago: University of Chicago Press.

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CHAPTER EIGHT

The Science, Politics, and Everyday Life of Recognizing Effective Treatments for Dementia

Janice E. Graham

1

We should recognize that we all gain some wisdom as we age and that creating collective wisdom, even in the face of disease and death, is the opportunity and responsibility we all share. (Whitehouse, 2006: 452) One should always ask who benefits and who loses in a given clinical experiment. (Löwy, 1996: 10)

In this chapter I draw upon what Keating and Cambrosio (2003) have called biomedical platforms, that is, the various techniques, instruments, research materials, and human actors that mediate and coordinate, in this instance, the diagnosis of dementia, in order to explore the ambiguity of a slow and subtle shift in its practice. I start with the introduction of a new technology for the treatment of Alzheimer’s disease, or, depending on the platform one stands on, treatment of the person diagnosed with Alzheimer’s disease. At the outset I acknowledge that I am troubled by some events –– by the motivations and the profits2 that are being made in the wake of this diagnostic shift, and at who eventually will pay the expenses. Even if this transition allows a more ethnographically resonant form of clinical assessment that might lead to a more humanistic approach to diagnosis, there is nonetheless a risk entailed for those who are the subjects of the diagnosis. 153

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I imagine coming across some kind of actor network shipwreck, where luminaries of this science-studies approach, say Bruno Latour, Michel Callon and John Law, wash up on a post-colonial island to encounter Michel Foucault thinking about growing old (which he never got to do). They sit down to a meal of Digby scallops3 to discuss a turn of events where characterizing a therapy’s effectiveness has now cascaded into an unwieldy assemblage of technologies of the self and of the other, into standardized clinical assessments that provide unconvincing evidence, even though they might register as statistically significant. These new technologies targeted at everyone are expensive, and garner great profits to a few. Diagnosis has drifted into a confusing array of powerful interests that are used to convince “consumers” that the objective assessments of the past need to be replaced by different types of evidence: softer, kinder, and more personal. The advertisements tell the “consumers” of these technologies that they should have the “right to choose” what they want, what they desire. Their personal autonomy and right to choose outweigh public-health frameworks based on social determinants of health. My discomfort comes from what I see as a slippery new techno-humanistic assessment being built upon a stack of cards of high hopes and raised expectations. This is all being driven by a somewhat unsavoury clutch of actors whose disclosure statements in no way override their conflicts of interests (Caulfield, 2001; Lexchin et al., 2003; Mintzes et al., 2003; Brennan et al., 2006). While a declaration of interests and activities is increasingly required to address transparency, it does not, per se, absolve an individual of a conflict of interest. Researchers receive hundreds of thousands, even millions of dollars from private groups for research, travel, personal education and training, or in the form of honoraria for educational lectures, organizing conferences, attending meetings, serving on expert committees, and writing articles and editorials. The extent to which these resources affect their judgement sparks heated debates, and there is little doubt about the effect of these activities on marketing. Yet these same people are continuing to grab hold of life in remarkably creative ways to which no one is actually paying much attention. Circled by a sea of entrepreneurial clinical researchers and industry, the elderly nevertheless persist in retaining a hold on life in remarkably creative and non-commercial ways. They continue to sort out how best to get on with their daily affairs and maintain meaningful relationships. Unfortunately, the provision of assistance to carry out those daily tasks is of mostly financial interest to for-profit health maintenance organizations slipping into Canada through free-trade loopholes. The central technical focus of my account here is the cholinesterase inhibitors (ChEIs) used to treat people with mild and moderate Alzheimer’s disease. With no other therapies readily identified and with a modest statisti154

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cally significant improvement in cognitive function reported from largely industry-sponsored clinical trials, they were approved for use in Canada in 1997. The principal subject of this account is the elderly person who has been diagnosed with dementia of the Alzheimer’s type, the specific diagnosis for which the drug is indicated and licensed to treat. The assemblage of actors and objects also includes clinicians, researchers, family, and friends who engage with the person diagnosed in different ways, and the assessment tools to determine the efficacy and effectiveness of the drug along with the activities and the memories that we all use to create our world and to give it meaning. And if this account appears to play on irony, I am simply trying to understand how professionals who hold the key to diagnosis and treatments and have taken an oath to heal based on sound evidence can so quickly be willing to reduce treatment to prescribing a pill, and one that is described in Nature Medicine as a “weak weapon” at best (Anonymous, 2006: 746). During the scientific rise of Alzheimer’s disease in the 1980s (Fox, 1989), and over my 25 years of involvement in cultural, epidemiological, and clinical research with elderly people, I have seen memory loss and cognition placed front and centre as the primary criteria used to recognize and diagnose a disease (McKhann et al., 1984). Now these criteria are being “disappeared” as essential symptoms to target for the treatment of the disease. Instead, there is mobilization to identify a different set of characteristics that mark treatment success, outcomes that can be recognized by both the people who are prescribing and those who are taking the cholinergic drugs. While remaining deeply critical of the negative paradigm of loss used to describe aging that tips a person over a pathological crevice, we must at the same time pay attention to the structural forces and activities behind the disappearance and replacement of characteristics and criteria for defining that process. Measures of memory are taking a back seat to more ambiguously defined functions and descriptions of “the activities of daily living,” and the elderly and their kin are being sought out to provide these new symptomatic descriptions. Whose interests are really being served by this transition? Are they in fact the interests of older persons?

Standardized Memory to Improve Recognizable Function In what we might consider our “hyper-cognitive” world, rationality has come to count for far more than emotion. Standard tools for technical clinical assessments of memory and cognition are essential to clinical fact finding, while social relations remain veiled behind biological fact-finding enquiries into the brain. Linguistic wordplay marks its performer as bright and engaged, and it is largely ranked higher than other forms of creative or mundane expressivity. The most often-cited and -lamented loss in people with Alzheimer’s 155

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disease (AD) and other related disorders has been memory. Short-term, longterm, procedural, episodic, semantic –– the construction of memories aligned with the pathological brain have quieted the mind and cemented senility as a biological process depicted by neurologists and bio-psychiatrists in sophisticated brain-imaging technologies. Left behind in these representations of biobrain mechanisms have been human relationships, and the many forms and contexts that communication and understanding between people take as they move in to accommodate misplaced names and forgotten faces. These configurations of what Law and Hassard (1999) refer to as “relationalities and materialities” reflect a much richer nature–culture matrix (Latour, 1993) that absorb and embody a fuller ecology through which the progress of neurodegeneration, what Davis (2004) has described as socioneurological degeneration, is experienced. In contrast to a perspective whereby memory in AD is accessed from performance scores on batteries of neuro-psychometric standardized recognition and recall tasks, I have, in other places, tied memories to activity, located in context-rich accounts of experiences and expectations of living one’s life (Graham & Bassett, 2006). Through social interactions people with AD and their caregivers continue to remember and describe their past, as well as their present and future. We use the term memorabilities to describe these performances of relationships, memories, and abilities (Bassett & Graham, 2007). In the strategies used to maintain dignity and personhood by both those with dementia diagnoses and those caring for them while they are engaged in everyday activities, the experiences of what gets depicted as cognitive loss can also be seen to be associated with inter-individual, cultural, and wider contextual features that address intention, communication, interaction, and performance (Graham & Bassett, 2006). The creative techniques for coping with cognitive changes are too seldom described; only measurable loss ever gets counted in traditional assessments. The original criteria used to diagnose people with Alzheimer’s disease in the 1980s and 1990s prioritized cognition –– they directed attention away from mundane behavioural and everyday activities and toward a progressive worsening of memory and other cognitive functions that could be measured using test instruments. Folstein, Folstein and McHugh’s (1975) Mini Mental State Examination (MMSE), commonly used in doctors’ offices, and the Alzheimer Disease Assessment Scale-cognitive (ADAS-Cog) (Rosen, Mohs & Davis, 1984), a research tool, are cognitive scales that hone in on logical and linguistic dimensions of cognition and memory. Neurodegenerative disease progression is measured by a battery of (assaulting) cognitive and behavioural tests: Spell “world” backwards. Who is the Prime Minister? Where do you live? Draw a clock. Repeat and remember these three words: penny, apple, table. The 156

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scores are added up to determine the severity of disease; the subject is transformed into a categorical object: Mr. Kumar is a Clinical Dementia Rating Scale 2, MMSE 15, ADAS-Cog 47. The object (disease and degeneration) becomes the subject (the person void of experiences, empty of expressive agency) to the medical and public gaze. The measurement protocols and scores are intended to target, reify, and materialize the pathology (Latour & Woolgar, 1986: 238). But these standardized packages (Fujimura, 1996) provide little insight into personhood, identity or meaning; the characteristics and actual meaningful markers of a person are practised in their symbolic and material relations in the world. As social scientists have long understood, meanings are localized in actions and relationships (Timmermans & Berg, 1997). They arise from our everyday habituated activities such as sweeping the floor, stacking wood, preparing lunch, playing crib with one’s son, shaving in front of the bathroom mirror, playing the piano, singing in the shower, going to the local pub. These everyday activities typically received scant attention from physicians. In 1994, the addition of what is called executive function to the DSM-IV pantheon of criteria for dementia marked the recognition that function and cognition were related (APA, 1994). So too, by making clinical meaningfulness a necessary requirement for the regulatory approval of anti-dementia medications (Leber, 1997), the US Food and Drug Administration (FDA) provided an avenue to approve the dementia drugs based upon clinical evidence of some improvement in the functional performance and global impression of change in the individual. The Clinician Interview-Based Assessment of Change (Knopman et al., 1994) was one such instrument, though less than satisfactory (Joffres, Graham & Rockwood, 2000). So while there was a small statistical significance shown of improvement in cognition (e.g., recalling a date or name during an assessment) with cholinergic therapy, this was insufficient to satisfy those concerned with whether the drugs actually helped people in their dayto-day activities (e.g., remembering to turn off the stove or finding one’s way home). Additional outcomes needed to be found, borrowed from “softer,” more personal descriptors used by the patients and caregivers themselves, thereby attracting and potentially expanding a market for a drug that otherwise was objectively not being seen to work very well. The MMSE and the ADAS-Cog are the instruments that had traditionally measured the progress of AD in cognitive domains, yet the new therapies for AD showed only statistically modest benefit (efficacy) using them. To approve or license a drug, regulators require reliable tools to ascertain clinical meaningfulness (Leber, 1997), along with statistically significant outcomes of cognition based on standardized tests (Leber, 1990). Many physicians and health-technology 157

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assessors (who decide whether the drug has proven effectiveness and therefore should be funded) remained unconvinced that these new drug agents were clinically meaningful. Different criteria, then, were needed to recognize treatment success and get these new drugs included (i.e., paid for) in provincial formularies and insurance regimes. If memory couldn’t be shown to improve enough in dementia clinical trials, then other domains needed to be brought forth, and new tools needed to be developed to identify them. So, by the mid1990s, subjective anecdotal vignettes, that soft stuff that has always been suspect from the perspective of positivist science, began receiving scientific and medical accommodation, while the methods of science were reconstructed to accommodate this event. The virtues of the powerful are often used like a blunt knife on those less powerful in a capitalist economy (Badiou, 2001). Much of neuro-psychological research had already separated out multiple domains of cognition for specialized tasks and tests, and, given the challenge and opportunities, researchers moved quickly to operationalize the clinical features of this social recognition of executive function4 into a bio-psychological construct. Medicine now had a platform to turn its gaze from individual memory (as understood from population norms) to material social performance, and gathered together the artifacts and social facts, surrogates and aggregates, to measure and evaluate their characteristics, behaviours and values as hard outcomes. Structural and corporate forces helped recalibrate the measuring tools in the interest of selling a drug rather than for the purpose of common cultural and social gains through systematic public-health infrastructures and community services.

Responding to Treatment Success Clinical researchers report that a person with Alzheimer’s disease loses, on average, about four to six points a years on the ADAS-Cog scale (Mulnard et al., 2000; Aisen, 2000) and that this decline is “clinically relevant,” i.e., it can be associated with loss of memory, names, events, behaviour and other functions (Winblad et al., 2001). In 2001, a consortium of geriatric researchers suggested a new definition for treatment success from dementia therapies. A new category of personhood, “responder” to Alzheimer drug treatment, appeared first in 1995 when Judes Poirier and colleagues published an influential paper that described significantly fewer individuals with the apolipoprotein E (APOE) 2 allele responding to treatment with the first generation of acetylcholinesterase inhibitors (Poirier et al., 1995).5 But the latitude for “responder” was greatly expanded by Winblad and colleagues: “responders” are “those with “improvements” in any of these areas [activities of daily living, behaviour, caregiver burden, quality of life and resource utilization, in addition to cognition] and 158

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those who experience a delay in progressive decline” (Winblad et al., 2001: 662).6 Multiple comparison tests are often used by statisticians to query similar domain-dredging techniques, although they appeared not to have been used to question this proposition. Since researchers had hauled in nearly every measure possible for inclusion in their definition of treatment response, the category might have been seen to any critical onlooker as having lost its sensitivity as an operational definition; the validity and ultimate utility of the drug therapy became impossible to pin down. Given the many distressing symptoms beyond a decline in memory, the researchers reasoned that “Alzheimer’s disease is more than just memory loss” and “that benefits in areas such as behaviour or functional activities alone are legitimate therapeutic goals” (Winblad et al., 2001: 656). They recommended revising the definition of responder so that long-term (1-year) stabilization, maintenance, or preservation of cognition, function or behaviour, be considered “improvement.” Without questioning potential reasons for its construction, the researchers stated that the definition of responder made it “possible to see that cholinergic inhibitors are achieving success in the treatment of Alzheimer’s disease” (Winblad et al., 2001: 661). The dementia experts could thereby state that the cholinergic drugs –– tacrine, donepezil, rivastigmine, and galantamine –– “have all demonstrated efficacy for up to 6 months,” and that “cholinergic treatments offer clinically meaningful, long-term (12 months or more) benefits in cognition, functional abilities and behaviour” (662). The marketing and educational materials produced by the drug companies recommended that patients remain on these drugs for life, despite little evidence from longitudinal studies. It appears that the data that were being called upon to determine efficacy and effectiveness in those people who are diagnosed with dementia were constructed to meet the marketing needs of the funders of the evidence. The standardized tests for cognition had ignored those idiosyncratic ambiguities that embody the very essential qualities we all live by which are not always rational, logical, or understandable to others. Explanatory models for any behaviour can easily be constructed post hoc, with much of social life retold in just this way, where the rationale for behaviour is invented “after-the-fact” (Murphy, 1971). To label a therapy effective, a measure of change from some former state had to be found to be statistically significant. The definition of responder established that simply staying the same in any one of three domains (cognition, function or behaviour) could “be considered improvement.” When the clinical researchers began to target qualitatively derived values and meanings in order to build techniques to recognize therapeutic responses and to individualize therapy, they forgot the social nature of our 159

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values and meanings. In the instance of creating a responder type, they made this category extremely wide, the consequences (if not the intent) of this being to attract a very large and vulnerable market. Many epidemiological facts remain socially and politically contingent since they are constructed from aggregated assemblages of data that are targeted for a specific collection. The tools selected to obtain these facts should require a careful audit (although see Strathern [2000] for the consequences of audit cultures) that takes into account the potential sources of bias and conflict of interest that are imposed on the selections made. Aging is a multidimensional, heterogeneous process that challenges both methods and theories. People, who are after all aging from conception, respond in many ways to all kinds of things, but they are also embedded in an embodied habitus (see Chapter Seven, above) that remains steady and constant. Change is uneven; it can occur gradually or it can spontaneously erupt and subside in one or two or many domains (e.g., cognition, memory, function, activities of daily living, social relationships). Aging is neither constant nor necessarily predictable (Wolfe et al., 1995; Stern, Mohs & Davidson, et al., 1994), and there is a vast constellation of patterns that can be marked as decline or improvement (Graham et al., 1999). While the measures may neither sufficiently target nor respond to the changes that may be actually taking place in the person, changes may not be comparable across individuals. In their examination of measures used for the dementia drugs to establish treatment-placebo effect, the FDA questioned the reliability of the historical controls used for comparison insofar as they differ in age and stage from the treated groups (Thal, 2002). Indeed, sponsors are known to select subjects with rapid decline “since success of a trial depends upon the treatment-placebo differential” (Thal, 2002: 389). Because people respond to placebos as well as drugs, a big gap between the two has to be demonstrated, and the simple way to do this is to choose subjects in rapid decline (ibid). Strategic tactics such as this are commonly used in clinical trials and introduce methodological bias that result in “the demonstration of a larger treatment effect size” (Thal, 2002: 389). Thal suggests that the drug’s efficacy may to some extent be an artefact of the stage of disease and that it may provide little assistance to those more profoundly affected. Persons at a moderate stage may respond to many factors involved in their lives, including behavioural therapies, changes in spousal employment, and so on –– their responsiveness may not be a result of drug intervention at all –– but a broad measure will allow response to be attributed nonetheless. Proponents for the dementia drugs claim that it is inappropriate, in fact unethical, to continue to conduct placebo-control trials after their effect has 160

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been proven. That decision, however, hinges upon whether their efficacy and effectiveness are still in a state of “clinical equipoise” when “belief ” camps register uncertainty in the professional community (Freedman, 1987). In the case of cholinesterase inhibitors, however, the camps authorize and oppose different tools and interpret results through different lenses. When issues of conflict of interest are thrown into the mix (most expert clinicians have their research sponsored to some extent by the pharmaceutical companies), there has been little common ground. Regulatory authorities differ on the criteria they require: the US FDA requires statistical difference to be shown between treatment and placebo, while the European authorities are satisfied by the proportion of responders (Thal, 2002: 389). Using the more liberal criteria set forth by Winblad and colleagues, a physician’s judgement of maintenance in behaviour or of global function alone becomes the legitimate benchmark of a treatment’s success. Memory loss was just one of several criteria for diagnosing dementia, and its once required prominence is now being surrendered to a smorgasbord of potential targeted symptoms. Improvement, or merely stability, in any one of several areas is deemed sufficient to consider a cholinergic drug effective. Astonishingly, the goal of many qualitative researchers who have long argued that dementia is multifaceted and needs to be understood in multi-dimensional terms has been co-opted and corrupted by defining it so broadly and then accepting change in any one of its constituent elements as treatment success.

Post-Market Response It is the responsibility of the national regulatory authority, whose scientific and clinical reviewers evaluate the clinical-trial pre-market data provided to them by pharmaceutical companies, to ensure that drugs are safe to use and have beneficial results. There can, however, be problems with the extent to which a clinical-trial environment represents ordinary conditions of a drug’s use after it is licensed. Regulatory agencies approve drugs for specific conditions (indications) and diseases in particular populations. Physicians, however, have the discretionary authority to prescribe a medication based upon their clinical judgement of information they deem reasonable to treat the patient. Such “off-label” prescribing practices are commonplace. The population treated in the real world may be dramatically different from the tightly controlled clinical-trial study group. Drug companies are concerned with marketing a new product, and call upon their clinical researchers, who have the most experience from conducting the clinical trials, to endorse it. These clinical researchers often become the key “educators” for the wider practising clinical community. Attempts by health-technology assessors and other clini161

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cians to obtain the raw data for independent assessment of the clinical-trial results are often met with refusal from the companies, who own the proprietary rights for the data. The study clinicians, on the other hand, armed with the protected data, move on to develop the clinical-practice guidelines in consensus conferences, that is, meetings held by the leading international experts and often well funded by the pharmaceutical companies who sponsored the clinical trials in the first case. It is no surprise, then, when the final recommendations for standard of care using the new treatment are the results of the conference. The members of the committees arrive with their minds already made up, and given the closed nature of the research activities, their funding, and the meetings, there is an absence of contradictory research results (Willison & MacLeod, 1999). The Winblad consensus redefined the markers for treatment success with little opposition in the room. It is questionable whether clinician–researchers can confidently declare they have no conflict when they have been entrusted with both the primary care of an individual patient and responsibility for the conduct of a clinical trial with all of its competing sets of interests, obligations, and rewards. Whose interests come into play in a contest between a patient seeking guidance and faulty methodologies guiding physician decison-making? Full disclosure neither of these interests, nor of the safety and efficacy results, can be assured (Lemmens, 2004a, 2004b; Lee et al., 2008; Rising, Bacchetti & Bero, 2008; Molnar, Hutton & Fergusson, 2008). The power of the pharmaceutical industry that funds and controls the results of most clinical trials (Abraham, 2002: 1500) also gives it the upper hand in defining what gets counted as outcomes and therapy. The publicly funded study by the AD2000 Collaborative Group (Courtney et al., 2004) was subjected to unprecedented attacks from both professional clinical-trial research and consumer communities.

The Science and Politics of the Clinical Judgement of Everyday Life The everyday “micromoral worlds” of people, including those with dementia, consist of “local knowledge and daily practices concerning the body and self ” (Kleinman, 1995: 123). This chapter has explored the practices whereby these micromoral worlds are being commodified by clinical researchers and industry in order to target and then market a therapy for loss to older citizens and those who care for them. When memory doesn’t prove to be sufficiently responsive to the treatment, a range of other symptoms are added to the balance; indeed, values are given scales. And herein rests my discomfort at critiquing what should be praised: a clinician’s professional interest in his/her 162

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patients’ life stories and experiences. Keating and Cambrosio (2003) describe a reshaping of clinical science and practice toward biomedical platforms where sophisticated technologies replace meaningful encounters, marked by narrative and patient history, between the physician and his or her patient. Yet in geriatric medicine we are seeing physicians greatly involved in the pursuit and collection of patient-described accounts and symptoms contextualized within everyday events. And this is indeed a good thing. We should not ignore the sophisticated imaging technologies and the race for molecular mechanisms and genetic markers that make up the high-tech wing of this field, but we should keep those specialists largely away from the bedside. My focus here, however, is on a small movement in clinical diagnosis that seemingly puts the older person first, as a situated person in the world, whose functional and relational activities of daily living actually matter in his/her treatment. My concern is that this counter-technology movement in diagnosing, or rather “treating dementia” (although what precisely the ChEIs treat remains at issue), is driven by the marketing potential of real-world voices. Researchers and physicians should be trying to locate subtle cognitive impairments earlier, they need to be able to classify and differentiate between subtypes of dementia, to identify individual responder subtypes to available therapeutic agents in a given population in order not to misdiagnose and, in turn, mistreat (e.g., Mitnitski et al., 1997; Graham et al., 1997; Ritchie et al., 1997; Ritchie & Lovestone, 2002; Hageman & Arrindell, 1999). To do this, it is appropriate that they look to dialogue with the people themselves. But by the disingenuous act of creating a definition for treatment inclusion that captures those who are staying the same, the clinical researchers have overstepped the boundaries of credible judgement. The goal to develop assessment techniques that are sensitive to clinically meaningful outcomes (Mallinson, Kielhofer & Mattingly, 1995; Kielhofner & Barrett, 1998) is a worthy one. Instead of focusing on loss, it is by improvement that therapeutic successes can be judged. Despite the importance of remaining sceptical upon interrogating the manipulation of “responder” and “improvement,” it is hopeful when the scientific community –– researchers, industry, regulatory agencies, and clinicians –– is asking what the data actually mean, how physicians can recognize and treat precisely what their patients experience, what hopes for improvement these treatments hold. Clinicians are listening for meaning in their patients’ stories, and medical schools are taking an interest in narrative matters. And what are they hearing? As diagnostic criteria evolve, assessment tools are developed to determine change, and improvement is glossed to mean no change at all, decline can then be removed as a criterion since it can’t be treated. Regulatory constraints are loosened to provide routes for the therapeutic agents to travel more easily from the bench 163

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to the person wanting to stay the same under the guise of diagnostic recognition, and dementia recognition gets de-cognized (Graham, 2001).

A Political Economy of Hope Harry Moody argued for “a communicative ethics grounded in practice and lived experience” to replace the abstract principles of beneficence, nonmaleficence, autonomy, confidentiality, and veracity (Hughes, 2000: 542). But concepts of justice, beliefs, practice, and experience are heavily subsumed by cultural (including market) forces. The development, advertising, promotion, and selling of drugs whose effectiveness remains highly variable is a key industry where expert evidence can be craftily constructed. People’s expectations are raised, and their hopes can sometimes be realized through an array of meaningful responses (Moerman, 2002). Things get better by themselves, by efficacious interventions, and by believing, knowing, and being told that they will. The smaller a treatment’s effect, the greater room there is for noise between placebo and efficacious treatment. Some remain more critical, demanding increased vigilance and invoking a sort of sceptical precautionary principle to risk and effectiveness detection. In 1991, and later in 1995, MaryJo DelVecchio Good described a political economy of hope in the “deterritorialized domain” of biomedicine. Paying attention to how physicians speak with their patients, “how they construct clinical narratives –– the stories created about diagnosis, disease progression, treatment and outcome, and professional obligations to patients –– varies across cultures” (Good, 1995: 463), Good adopts Cheryl Mattingly’s (1998) notion of “therapeutic emplotment”: “Physicians are creators as well as ‘readers’ or interpreters of clinical stories. In clinical narratives, the physician is nodal, directing the story, emploting the action, shaping the experience of treatment and disease course, and managing the treatment team” (464). A cultural expectation of explicit diagnoses and explanations of treatment options has been institutionalized in “patient rights to know” and “to decide treatment options” (465). She continues: “The conveying of ‘hope’ is tied to information, to therapeutic action and to a commitment to access all possible available biotechnologies” (465). It becomes an ethical prerequisite to try whatever is necessary to fix whatever needs fixing. Disentangling the powerful performance of hope and hype, between placebo and “true” treatment effect, has yet to occur. When meanings are to be measured, the list of potential targeted symptoms may be countless. What one might measure as a positive decline in twitch, another might consider a negative increase in palsy. One might ask why such concerted attention has been paid by busy experts to such small effects of treatment when there has been lit164

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tle work to promote social and behavioural research on what are now being called “non-pharmacological treatments” (NPT) and quality of life (though these are beginning to receive attention in works, for example, by Whitehouse, Maurer and Bellenger [2000], Sabat [2001], and Hughes, Louw and Sabat [2006]). These research groups do not usually receive the funding or interest that the sponsor-backed research-trials enterprise garners. The finding by Holmes and colleagues (2002) that lavender-oil aromatherapy resulted in a 60-per-cent improvement, 33-per-cent maintenance, and 7-per-cent worsening of agitation in patients with agitated behaviour in severe dementia shows an effect that far exceeds any of the current pharmaceutical drug therapies. Applying the Winblad criteria, this study could report a 93-per-cent treatment success for aromatherapy, but it received scant attention. The pharmaceutical business is financially and symbolically embedded in what Good has called, with regard to physicians, a “political economy of hope” (Good, 1991; Good, 1995: 464, 465). Typically, showing a drug works has meant proving that it contributes to autonomy and independence, the ideological targets for lucrative profit margin and noticed outcomes. Refocusing on community and interdependence will be a challenge. But the political economy of hope, pharmaceutical-style, is a robust actor. A research and development culture that has been built on biomedical therapies will be quick to sharpen its economic structures of production, gain a sympathetic regulatory process, and develop a sophisticated machinery to accommodate the professional uptake and commercial distribution of non-pharmaceutical commodities. Find the effect, and they will come. In all of this we need to remember that an emphasis on more therapeutic products seems untouched by evidence that it is the lack of access to structural resources that is most associated with poor health and mortality (e.g., Lynch, Kaplan & Shelma, 1997; Lynch et al., 2000; Ross et al., 2000). Our power grids collapse because resources to maintain them have been chipped away through deregulation. A cornucopia of me-too drugs gets re-introduced into the market, with a slightly modified indication or package –– only 3.4 per cent of new drug submissions in Canada between 2000 and 2004 were new active agents (PMPRB 2005) –– and are withdrawn more quickly (Lexchin, 2005). A moral economy of hope, promulgated by the pharmaceutical industry whose obligations remain to their shareholders, manipulates individual fears into needs that define effectiveness. They adopt a pharmaceutical grammar as a standard to measure the effectiveness of new therapeutic drugs. What Horton (2001) describes as a “fatal erosion of integrity” in the FDA approval process might be partially attributed to the decline in publicly funded research,7 which led clinician–researchers to go to drug companies to sponsor 165

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their research. Sufferers and their physicians hope that the pharmaceutical interventions make a difference, while the low-tech options for care disappear with budget reductions in health care. When industry sponsors research to locate cognitive impairment earlier, they discover a bigger population of benign “sufferers” who get hailed into a treatable existence (Graham et al., 1997; Graham, 2001; Graham & Ritchie, 2006). Industry-sponsored Continuing Medical Education (CME) programs retrain clinicians to re-cognize cognitive impairment at milder and earlier stages. And stabilization of existing symptoms suffices as a successful treatment effect. The marketing strategies and sponsorships of the pharmaceutical and biotech actors serve the Alzheimer’s disease consumer groups through providing core funding and a pharmaceutical grammar to understand their symptoms and imagine their deliverance from suffering through soon-to-bereleased “hope-in-a-package.” Innovative science, venture capital, and the moral basis for profit are intrinsically connected in speculative therapies. The companies that market the therapies also finance the research and development of the instruments that will measure the treatment improvements. Undoubtedly marketing to the significantly larger population who are now being targeted with early or mild cognitive impairment (Graham & Ritchie, 2006) will attract new instruments to detect and measure previously unnoticed imperfections, but we should remain watchful, too, of the items that disappear and get replaced by the values and empirical constructs of that latest epistemological or ontological (Mol, 2002) moment. The Cochrane Review and the Canadian Coordinating Office for Technology Assessment (now the Canadian Agency for Drugs and Technology in Health) have both confirmed only “modest short-term” benefits in outcome measures for the cholinergic inhibitors that “may not be reflected in changes in the daily lives of individuals” (Perras et al., 2005: 18). Clinicians turn to the softer, qualitative methods to ground their judgements in refined operational definitions and criteria that evoke patient and caregiver perceptions, meaningfulness, and hope for symptomatic relief in an otherwise progressively declining constellation of memories, thoughts, and actions. Self-regulating clinicians have the go-ahead to “detect” changes, and they are getting their toolboxes ready to “judge detectable changes” in light of clinical meaningfulness (Rockwood & Joffres, 2002: 1007). Alzheimer’s diseases are progressive neurodegenerative impairments marked by decline from a previous level of cognition and social functioning. People with Alzheimer’s disease, on the other hand, are active, engaged, interactive people involved in sustaining relationships. Whether an observer chooses to recognize improvement or mark decline seems much related to his 166

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or her own interests. Hope is incited when a drug is available, and marking these hopes as improvements becomes the goal of the clinicians and the industry –– and perhaps revitalized in the people more closely encountering the illness. With the advent of approved pharmaceutical agents to treat AD, the identification and definition of change in individualized problem areas gains both clinical and personally meaningful significance for those suffering from the disease, and their caregivers. While the clinical definitions of dementia are moving from measurable objective criteria, people live and laugh and survive, they hope and they fear, in immeasurable ways. They convey dignity and embody memories. “Actors come in many and wonderful forms.... Accounts of a real world do not, then, depend on a logic of ‘discovery’, but on a powercharged social relation of ‘conversation’” (Haraway, 1991: 197). My colleagues and I had the opportunity to meet with, over several visits, a retired librarian, who delighted in showing us her postcard scrapbook. She explained the apparently random collection: Anything, any piece of thing that I like, I put in. And someone said ‘you don’t put them in order.’ I said, ‘I’m not doing order, I’m just enjoying myself.’ (Graham, Bassett & Rockwood, 2002)

How should we account for what sits planted within another’s mind, especially when they may not easily be able to communicate what they feel? How should we interpret meanings when words are wrapped in a shroud, caught in a blanket of fog? We might look to actions beyond the word, and beyond memory, to their life as they continue to live it.

Acknowledgements I would like to acknowledge the Canada Research Chair program and the Canadian Institutes for Health Research for their generous support.

Notes 1. The material in this chapter is also discussed in Graham (2008). 2. Profits come in many symbolic and material packages, augmenting corporate wealth and shareholder dividends, as well as individual professional status and power by the social capital gained through grants and promotions, in directorships, positions on boards and expert committees, and in monetary economic contracts, consulting, guest-speaker honoraria, and capital funding for administration. 3. This is, after all, my imaginary encounter, where I move Callon’s St. Brieuc Bay 167

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4.

5.

6.

7.

story to Nova Scotia, where global warming is now another actor affecting the northward movement of these tasty molluscs. The glaring class hegemony in “executive” as the label chosen for these “higher”order cognitive and functional abilities, and the operationalization of tasks that mimic those of white-collar middle- and upper-class American professionals is readily apparent and self-critiquing. As a graduate student and research associate with the Montreal genetic epidemiology research group Projet IMAGE between 1993 and 1995, I was aware of the buzz coming from Allen Roses’ lab at Duke after he announced findings of the association between a molecule known for lipid transportation and Alzheimer’s disease. Roses’ personality, as much as his research, helped establish the platform ramping up pharmacogenetics research activities in Alzheimer’s disease (Marshall, 1998). And, further, “Relative stabilization ... is an important outcome.... We propose redefining ‘responders’ to Alzheimer’s disease treatment as those patients who maintain baseline scores (improvement over baseline * 0 points) for 1 year on appropriate scales, assessing cognition and/or functional abilities, and/or behaviour” (Winblad et al., 2001: 662). “What ails the FDA” is a subject for considerably more in-depth analysis than the space affords here (see, for example, Okie, 2005a, 2005b).

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CHAPTER NINE

“Them” are “Us”: Building Appropriate Policies from Fieldwork to Practice

Janice E. Graham

The papers written by the contributors to this book critically turn our attention away from biomedical notions of decline and loss as the prevalent paradigm for aging. They do this by describing in some detail the engaging lives of older people through the use of ethnography. This research technique enables people usually subjected to surveys, experiments or other decontextualized probing to exercise their own voices and make themselves heard. The seniors whose voices are heard in these pages recognize that they may not be as physically robust as they have been, but they waste no time in letting anyone interested in asking know that they are not standard packages awaiting cookie-cutter solutions. The chapters in this book form part of an emerging “critical” theory of aging because they seek human emancipation. Critical theories have been developed in connection with the various contemporary social movements that identify the multiple dimensions of the domination of human beings in “modern” societies. These chapters provide a descriptive platform aimed at decreasing domination and increasing freedom from normative assumptions about aging, particularly as they are imposed by various agents of social control. External social services and health-care provisioning are part of the political economy of all of our everyday lives, and they factor into the accounts in this volume. We see that across cultures and stories, relationships are defined, understood, and performed in a precarious balance between commodification 177

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and communitarianism. The people represented in these accounts share relationships and seek recognition and acknowledgement; they accommodate and resist as necessary to maintain their sense of self in relation to home, to memories, to events, to the things and people that surround them and have meaning to them. Faced with competing claims for access to resources amid political and public discourses suggesting that economic productivity ends after retirement, we witness in these chapters palpable evidence of ongoing personal and interpersonal development. This includes some vital forms of value-added productivity among senior citizens that often go unacknowledged. Policy advisors should take these into consideration in order to advance a more realistic understanding of older people as continuing to contribute to our communities, and to create ways to afford them the dignity and respect they deserve. Failure to move beyond narrow and deeply constrained notions of what it means to be old can only have disastrous results for both personal and collective experience in a society with greater life expectancies and an increasingly older population profile. With the ambitions of youth behind them, many elders can be trusted to act in the common interests of the group rather than for themselves. Humanitarian attributes of caring and compassion, of listening and kindness, with time for reflection gracing stability over action in haste, are often the common currency of old age. To retire the economic metaphors so often used to denigrate the old, the researchers writing in this volume find that seniors constitute their communities. Wisdom and the experience afforded by time endow senior citizens with specialized skills to perform vital cultural roles and functions. Our colleagues in this project have sought to counter stereotypes in diverse communities across a variety of geopolitical landscapes. They tell us that a focus on loss and decline with aging is linear and mechanistic, and that it limits our gaze, disguises hegemonic power differences, and mistakenly prioritizes contemporary neoliberal ideologies and modes of production as desirable. Rather than contributing to health, these structural negativities are the roots of the abuse, resignation and decline that seniors may experience. Rich in ethnographic accounts of alternative experiences of adapting to living with older bodies, their stories illustrate and should, we think, promote another outlook. Here, acquired networks of friends and family, of pets and familiar environments, are all the richer and more meaningful for the trials and tribulations that people have gone through to maintain them. The ongoing strength and implications of gained relationships contest the version of decline in aging imposed on us by direct-to-consumer drug advertising and the antiaging hype of venture capitalists and treatment industries. We consider 178

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instead representations that highlight feelings, emotions and resiliency as poignant alternatives to the explanatory models of biomedical disease. Stephenson strikes directly at this rational enlightenment straw man. Anthropologists from Mauss (1990 [1924]) and Godelier (1999), to those writing in this volume, continue to provide empirical evidence for reciprocity in social relationships that challenge the utilitarian self-interests of Homo economicus. Kindness and caring defy efficiency, productivity, and the seduction of novelty. Stephenson provides alternative examples of aging marked by maturation, refinement, and patina, rather than decline and loss, where power flows from the etymological transformation of honour to alder to elder, rather than from a commodities marketplace. In this latter scenario, meaning can be derived only from the immediate economic value of the object, otherwise it has no meaning. In her book The Person in Dementia: A Study of Nursing Home Care in the US, Athena McLean (2007) compares the values that underlie two institutional scenarios for “the person in dementia,” a flexible person-sustaining approach and a biomedical task-oriented approach based on disease progression. A person-sustained approach supports people in embodied routines not institutional schedules; it creates an environment where people can eat when they want and follow their own clock, not that of their keepers. Age in this paradigm is relative, of the kind that Stephenson evokes from cultural understandings of dream time and existence located in the folds of time, rather than fragmented and cut off from the embodied practices that sustain personhood. Von Faber and van der Geest tell us that older Netherlanders consider themselves as aging successfully when they can adapt and accommodate to their limitations without “becoming grumpy and bitter.” More than simply a behavioural response to growing old, successful aging becomes a “work of art,” something to be achieved. Losses are turned, reworked, and impressionmanaged into a variety of gains. Von Faber and van der Geest take the view that policy makers hold an outsider’s perspective to aging that is significantly different from the viewpoints of those experiencing old age themselves. As researchers, they tell us, we must choose between these two perspectives –– the “them” and “us” of this chapter’s title. Importantly, they show that policies, although not of the public, affect the views of the public: a social welfare state that promotes “independent living as long as possible” for older people easily becomes the dominant paradigm. So a fierce desire to conceal dependencies and assert independence is counterpoised in the setting of the Netherlands’ social welfare state. We are reminded throughout this volume of how culture, including domestic and political economies, shapes the experience of aging. We have had the opportunity to read accounts from a wide variety of state contexts carrying 179

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out different policies and practices, and to compare and contrast them. Oakley tells us that older South African Namaqualanders, provided by the state with financial resources (pensions) to remain independent of their family, can thereby afford to turn their attention to emotional relationships rather than a co-existence of material dependency. Indeed, they choose and use these resources to continue ongoing social exchanges and support within their families. Unlike South Africa’s Namaqualanders (but to a common end that invokes a reciprocity of relationships entangled with material means), Netherlanders appear to pre-eminently value ideals of autonomy and self-determination. While social relationships embody feelings and emotional caring, social services provide resources for essential care as a publicly sponsored business transaction owed to all citizens, thereby allowing social relations to maintain the ethic of autonomy and independence divorced from material need. We see in Chapters Two and Three the political and moral economic framing of experiences. Social, political, and economic differences between Canada and the Netherlands are brought into consideration when Canada’s mix of public and private social security is seen to result in feelings of insecurity and dependence among older Italian Canadians who both desire and expect ongoing involvement with their families. Both Migliore and Dorazio-Migliore, and von Faber and van der Geest show that people actively manage setbacks; it is our ability to adjust to changes, whether positive or negative, that defines our ongoing successful aging in the world. As our bodies encounter the various normal assaults of time, we find strategies to adjust and adapt. It seems that when there is a loss of social relationships, the inability to fill in the gaps of loneliness and need for acknowledgement mark a shift in managing one’s social location. As relatives, health-care providers, and researchers, we need to identify these spaces of disparity and take them into account; they are areas where genuine assistance could be provided. Migliore and Dorazio-Migliore pay close attention to dispelling a linear model of inevitable decline, providing further example to the thesis underlying Stephenson’s Chapter One. As we age, they remind us, we unavoidably experience ups and downs, episodes of better and worse health, not constant decline. Their chapter plays with the ambiguities and variabilities of the use of the trickster-like term “old age,” imbuing values and degrees to aging. Pain and suffering are viewed by members of the Italian-Canadian community as bad aging, while “being well” includes and invokes an essential “peace of mind.” It is abandonment, symbolically a lack of respect, that leads to a bad old age. The narrative of Zia Ermalinda reminds us of the bond between financial resources, respect, independence, and blossoming, glossed by Migliore and Dorazio-Migliore as “active, animated, communicative, and 180

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funny.” Zia Ermalinda’s story is an illustration that transformational change occurs, even in one’s 70s and 80s. The resolution of tensions surrounding burdening a family and remaining in one’s own home are integral to managing one’s life’s experiences. The ability to transform an institutional facility into a home, the details of everyday life that convey the features of how people “make do” or “get by,” or perhaps better, how they create therapeutic landscapes through social institutions (group prayer), all background a paradigm of inevitable loss as intrinsically superficial and needing embellishment with social facts. Like the other contributors, Migliore and Dorazio-Migliore do not dispute frailty. Instead, they show that socio-cultural and physical loss is not reserved for the old and that, as in the Netherlands, it is the ability of people to manage their losses and gains throughout their lives that speak to their successful aging. And significantly, the chapter by Kontos and my own chapter do not restrict these abilities to psychometric constructs of cognitive normality, but broaden our scope for recognizing participation and ongoing relationships even among those with Alzheimer’s disease. Migliore and Dorazio-Migliore make clear that the meanings that older people attach to a good old age go far beyond physical “health” to include residence, social security, social relationships, and religion as constitutive of “being well.” As in the Netherlands, older Italian Canadians recognize that economic demands and resource issues have changed; they do not want to be a burden on their younger family members. But they still want to be listened to, acknowledged, respected, and included, and unlike the Netherlanders, Italian Canadians appear to have few hesitations in making these wishes known. So, too, Gloria articulates the transition occurring among Italian Canadians in perceived responsibility for caring for their elders as they encounter the political economic realities that impinge on living arrangements and filial responsibility, with associated shifts in values and priorities. Although the authors did not have the comparative data to address religious differences in approaches, it is plausible to reflect that Italian Canadians (predominantly Catholics) might have a different view of assisted death than Netherlanders, who are predominantly Protestant in background (recognizing that this homogenization of state and religion does not reflect the actual demographic diversity of either country). While fear of becoming a burden for Netherlanders may well contribute to their hesitation to communicate episodes of illness to close relatives, and perhaps to a more ready response to euthanasia as a resolution, still a determination to manage, not to focus on losses, prevails. Neither is Steinkopf, South Africa, a stage for the framing of aging as a series of losses. Taking us along a social historical path, Oakley describes people organized around communal and secure land tenure that had ensured that 181

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everyone’s needs were met throughout their lives. Over the course of the last century, they went on to encounter migrant mining-resource labour, apartheid and its end, and uncertainties and insecurities that could not have been imagined at the start of that century. Oakley steeps her account in the exceptional shifts in political economic forces that Namaqualand elders encountered throughout their life course across the twentieth century. The people resisted individualist capitalist forces, but also gathered knowledge in the outside world that remains valued by younger generations. Importantly, it is older Namaqualanders who hold in their memories the key information on essential aspects of “Namaness,” land usage, and ownership rights that the younger generations need in order to gain access to their aboriginal land rights. And as with the Italian Canadians in Migliore and Dorazio-Migliore’s account, a residence takes on the essential meaning of home only when it reflects the values and materials of what it is to be human in the community at large. South Africa’s state pensions confer independence to the old and foster the dependence of younger generations who rely on the older pensioners for loans. They become interdependent. Managing money is a type of knowledge, and its meaning as payment for work done throughout the life course bestows value upon the recipient. But what happens with the elderly when the ability to work has been a struggle throughout their lives? When one has not acquired the reinforcements of house and home and family to carry one through into old age? Russell takes us along a path largely ignored by researchers and health-care providers, drawing our attention to impoverished older men in the inner city of Sydney, Australia, who lack the resources and securities taken for granted by many for their age and gender. Economic and social inequities in their lives are highlighted; it is the complex association of gender, class, and partnership status that contribute to late-life vulnerabilities for them, not their age per se. Russell employs ethnographic interviewing to understand how marital status affected the men with whom she spoke, rather than trying to “control” for it in some sort of sampling procedure typical of positivist theories of aging that lack a “critical” perspective. Occupation and income are strongly related to marital status and home ownership, which amounts to security in later life. Russell shows how social policies effectively treat low-income men differently –– they did not qualify for public housing until 1984, and even now, many do not know they are eligible. The Australian class structure that shaped these men’s work and life histories impacted their access to resources, marriage opportunities, and the possibility of home ownership. As itinerant migrant labour –– whether in resource industries (mining, forestry, fishing, etc.) or in the military, forging and maintaining marriages and families is a challenge for impov182

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erished men. Consequently their often attenuated social networks are mainly among themselves. To complement and augment the approach taken by Migliore and Dorazio-Migliore, Russell calls full attention to the political economy of well-being rather than to a reductionist biomedical construction of “loss” to answer our questions as to who ages successfully, and how that might happen. Selfhood, identity, and class are intricately intertwined in many of our accounts. Kontos draws our attention to their overwhelming presence and entanglement in the everyday lives of people. Both Russell and Kontos take us on brief journeys through the social and political lives of the people they bring into focus to illustrate their cases. Taking place over a period of eight months, Kontos’s fieldwork did not, however, produce clinical markers of disease progression or of social regression. One might wonder whether the clearly defined class system of residents, tuned to etiquettes and style, might change over time and, more generally, how class has been neglected in almost all accounts of identity among persons with Alzheimer’s. The role of a political economy of hope in maintaining the dominance of cognitive rationalization figures into both Kontos’s and my accounts as they explore the experiences of persons with dementia, grabbing hold of examples of resistance to contest the existential loss of self while, ambiguously and at the same time, continuing to permit the term “sufferer” (of Alzheimer’s disease) to slip into their descriptions. Kontos points us to John Locke’s dictum on a person with a central core of features –– cognition, rationality, and memory –– but questions what happens to caring, coherence, and spontaneity. For Kontos, embodied selfhood takes us beyond (or below) consciousness to a pre-reflective era. People’s daily routines, such as how they like their tea, coffee or cereal are specific and maintained. Expressions of preference, assertions in fact, are strong evidence of an awareness too often lost to researchers less attentive than Kontos whose theory and method of exposition are neither critical nor ethnographic (see also the critique by Graham & Bassett, 2006). Kontos provides us with examples where “creativity ... persists despite cognitive impairment.” She provides a poignant account of how Ethel may not know the reason why she does things, but continues to perform her forgotten abilities –– what Bassett and Graham (2007) call “memorabilities.” In the words of a caregiver, “You don’t have to know but we like you to try.” They remain attentive to etiquette, recognize concentration-camp tattoos, and are capable of gestures and acts of consolation; these old people’s brains may no longer be “neuro-typical,” and their behaviours may be dementing, but they are still social beings dependent on time-honoured traditions that were portrayed by Barbara Myerhoff three decades ago and by me in 1982 after a year 183

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of fieldwork in a long-term care facility. There is a clear message to send to policy makers and clinical practitioners here about personhood: it does not evaporate with cognitive memory changes; it persists as embodied knowledge and identity for a very long time. Kontos illustrates how, what Watzlawich, Beavin Bavelas and Jackson (1967) called the “pragmatics of human communication,” continue beyond the plaques and tangles in the brain. Grunts, gestures, and big beautiful hats that gain expression through hand signals serve the same end for Kontos’s participants –– they communicate a thought not necessarily hindered by a forgotten word, for humans are resourceful until the end. To give up on those missing a privileged ability is surely dehumanizing for both the person forsaken and the person who dismisses the “other” as fully human. Social interactions continue –– they are not lost –– and these are innate abilities, primordial acts of embodied selfhood for Kontos. To make and express meanings through physical action hearkens back to the symbolic anthropology of Roy Wagner (1981) and Victor Turner (1967). Like Turner, Kontos walks the reader through a forest of symbols in the many and varied expressions of anger in her community of practice, of practical reason and embodied interpretations of communication among its members. It is most likely as difficult for “us” to look in upon “others” as it is for “them” to look out upon “us.” This discomfort with the extraordinary has been tracked by anthropologists since the dawn of the discipline. That we forget our fundamental relativism when the people we are looking at resemble ourselves is not new, but it is worthy of the attention we have tried to give it here; there are profound policy and practice considerations that must come from the evidence at hand. In Ethel’s lament to Dora, in Kontos’ chapter, “They were doing to us very bad things.” How do we change this world? To this end, Kontos reminds us of the limits of ethnographic writing that Clifford and Marcus explored in 1986. She suggests we look to drama as a mode of knowledge translation. What if clinicians and other health-care providers considered bodily expressions and nonverbal communication in their practice? Holmes and Stephenson provide us with stories told to them by older Canadians in acute-care hospitals. Attention to their narrative accounts suggests ways to improve the overall standard of care and public health for institutional settings. Not surprisingly, elderly patients value interpersonal communication with hospital staff and their struggle to be heard and to have physical issues attended to is ongoing. Compare their pleas for social interaction and feedback to the active engagement or agency of residents diagnosed with cognitive impairment assisting one another, in Kontos’s chapter. Or compare them to the expectations of family members expressed by the seniors in Migliore and Dorazio-Migliore’s 184

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chapter. Busy and harassed nurses, distressed or absent family members, care attendants who insist they do not have time to acknowledge the very people they are meant to care for: the consequences of this inattentiveness are clearly described by Holmes and Stephenson, with major health and economic costs. Holmes and Stephenson show the effects of an emphasis on the medical and technical tasks in North American hospitals and many long-term care facilities, easily contrasted to services that provide home-care and personal-care services and support in the Netherlands, as described by von Faber and van der Geest. In all our accounts, there is little doubt that the elderly themselves have very clear notions of what accounts for good care. Holmes and Stephenson show that, at least in the eyes of the elderly people for whom the services are meant to support, it is the low-tech solutions that mean the most. Listening to the needs expressed by the seniors, acknowledging and responding to them, is a simple remedy for discomfort and worry. Patients of acute-care hospitals and residents of long-term care facilities can see when public areas are unclean –– the decline is in public-health services, not in residents’ perceptions. Although cognitively impaired, they see and respond to the distress of their neighbours. As Holmes and Stephenson point out, it is ageism and stereotypes that diminish abilities: instead of giving the elderly a hand when they call for assistance, they are too often ignored as troublesome, especially in the context of cutbacks to staff numbers. Yet, the low-tech precautionary measures that address quality of care and reducing environmental and health risks were the first items purged from our hospital budgets in the belttightening 1980s, creating a dangerous alley for the serious “super-bugs” and deathly infectious diseases that plague our institutions now. What administration sees as a technical problem often has simple human solutions –– sufficient cleaning staff, and staff who make sure bed rails are optimally positioned for patient tasks, who consciously position important aids like glasses or hearing aids, who take the time to adequately identify themselves and orient residents. These little acts make a difference: “In an environment requiring increased efficiency, ‘soft’ low-tech areas of care, such as appropriate communication, compassion and respect are seldom measured and included in schedules” (Holmes & Stephenson, this volume). But buyer beware: these simple solutions are only promoted when a value can be identified. As I describe in my chapter, the mixed methodologies developed to bring together these low-tech patient and caregiver expectations with clinical approaches to outcomes may have been cynically produced only to provide patient testimonials to get drugs approved and to market them, rather than to promote social models of individualized care. The work of the ethnographers in this volume has focused on the knowledge, beliefs, and practices of people aging. We have each, in different ways, 185

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taken the perspective that “them” are “us” in not so many years. But we can see, too, how the different perspectives of the researchers in this volume shape their accounts. For example, while von Faber and van der Geest exclude people with cognitive decline because of their “tragic” condition, both Kontos and I move deeper into the memories and meanings of the activities of people with this same condition to find something very different reflected in the persistent work of selfhood and resistance. Capable of identifying what they want and with no need for self-explanation, the older citizen has paid his or her dues and can celebrate “not doing order,” and “just enjoying myself.” In excluding those with cognitive impairment, von Faber and van der Geest set limits on an opportunity to consider what might constitute a successful adjustment to cognitive impairment –– the very subject of Kontos’s and to some extent my own contributions. We both open the space for communications beyond a societal rational normalization –– the people we talk with are neither cognitively normal nor socially normative. Dementia is viewed by many who aren’t afflicted with it as the “worst scenario” to be anticipated. Whether it is, from the viewpoint of those with dementia, or of Kontos and me as researchers, remains contestable; three-quarters of those with clinically determined severe hearing loss, for example, do not experience this as a disability. Seventy at the age of thirty looks a lot different than seventy at the age of sixty-nine. Instead, people identify and adopt various coping techniques to accommodate their needs. Von Faber and van der Geest retain the responses of one person who declined cognitively, representing that person through conversational idiom rather than in structured interview format –– an accommodation well worth considering more widely in the work of other researchers, who conventionally simply eliminate data from anyone in a sample who is not aging “normally.” A much higher percentage of those interviewed in the anthropological component of the Leiden study viewed themselves as aging successfully than the quantitative assessment concluded. Interpretation of contentment, and agreement with the subjects themselves, appears to elude quantitative statistics almost entirely! Health as in medical health fitness itself is not an adequate surrogate for this kind of contentment; close personal relationships and social integration more closely track these feelings, along with the ability to communicate (in all kinds of ways) those feelings. Practical strategies to remain healthy abound. Our accounts emphasize the ordinariness rather than the extraordinary singling out of their lives and selves as actively engaged agents of success, whether in sickness or in health, cognitively normal or not, adjusting to new limitations. It is the human journey in every conceivable way, and most emphatically it is not simply a pathway strewn with lost abilities as one approaches some kind of zero-state associated with death. 186

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A generation ago, in their book Metaphors We Live By, Lakoff and Johnson (1980) explained how we structure our everyday lives according to prevailing expectations and values. In the late 1980s, the group of clinicians and researchers designing a protocol for a proposed Canadian epidemiological prevalence and incidence study of dementia decided (probably quite correctly) that “dementia” would be a rather negative term in the title of a study dependent upon obtaining high recruitment. So they renamed it the Canadian Study of Health and Aging, in order that funding agencies and study participants would not be dissuaded from participating by the rather pathologically focused study target. The strategy worked well, and phases of that research are still ongoing twenty years later. As we age and travel, live and learn, we witness and constantly engage, adopt and rework these metaphors and ideologies, not always knowingly. We experience and ride through our liminal and transcendental biosocialities (to update Victor Turner with the notions of Foucault [1978] and Rabinow [1999]). The intent and relative appropriateness of our actions, and indeed our thinking, shift over time, and because of time. Emerging technologies and ideologies push new issues into the public marketplace. We have collected here accounts from close to the ground, far from the policy maker’s committee meetings and data sets. But we are reminded that the people represented in these accounts never live far from the reach of policy; they too often are subject to the violence of inappropriate regulations that pay them no heed. The attitudes, values, and actions of the elderly may fiercely oppose the limitations imposed by policies while adopting some of their features. And, of course, this occurs at all levels, with all types of calculations and statistics and truth-making and truth-telling adapted to what exists and is created around us. That is the nature of social contradiction, and the lives of older people are deeply embedded in the contradictions that surround work and leisure, autonomy and dependency, identity and interdependency, the body and the mind. So why everywhere do we see ever more studies into costly high-tech solutions, more clinical trials for magic bullets that fizzle, more hope raised for these cures than social programs meant to enhance integration and provide public-community infrastructure put in place? Why does the biomedical model of decline prevail? In Canada there has been increasing effort to fund evidence-based policy and knowledge transfer. But between 1999 and 2003, research into health systems and services, and the social, cultural, and environmental determinants of health received only about 16 per cent of the total funding of the biomedical and clinical pillars of the Canadian Institutes of Health Research ($59.2 million and $374.3 million, respectively) (Graham nd). Policy makers aren’t getting what they need: they are not hearing older voices through the heavy technocratic screen of biomedical research institutions; 187

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they hear too many interested voices representing the pharmaceutical industry, in multiple guises but none reliably representative of the actual positions of the elderly and those who care about them. While Gee and Gutman (2001) make a convincing case that the myth of a demographic “crisis” of aging has played into the dismantling of social welfare, at the same time we have seen a wealth of extremely expensive solutions (i.e., more physician specialists using more expensive equipment and more costly therapeutic drugs), while too few have addressed the dearth of data to establish the appropriateness rather than the quantity of health care. Access to expensive specialists, high-tech scanners and the enormous burden of excessively expensive new pharmaceuticals has become the common surrogate set of markers for a healthy health-care system. While economic evidence for the effectiveness of these high-cost solutions is hard to find, estimates that up to fifty per cent of these interventions are inappropriate point toward a “sick” health-care system (Evans 2002; Barer [2002], citing Schuster, McGlynn & Brook [1998] and Lavis & Anderson [1996]). The lack of adequately trained support staff in nursing homes, or sufficient, affordable, and effective home services for the elderly moves the budgetary burden from health care to community and social services, where the elderly are pitted against toddlers, daycares, and playgrounds for attention and resources. They are framed as competing social interests, not part of the same social interest –– one that emphasizes the quality of how we care for one another. Policy recommendations associated with the themes of this book that are intended to humanize care and understanding of the elderly emerge from a set of questions that frame our findings. Institutional change emerges from a reallocation of time and resources, and consequently any reconfiguration of policy requires some estimation of how it might alter the social and emotional experiences of seniors living and experiencing the world in their own temporal flow. Primarily this means assessing how any change in policy will impact the quality of social contacts that seniors experience. Will a change aimed primarily at staffing issues give seniors more opportunities for meaningful social interaction, or will it simply be diminished? Are new policies simply intended to “save time” and allow more to be accomplished by staff in a discourse of efficiency, or will they grant those for whom the pace of living is more reflective of a temporal space in which their experience counts? Any policy directed at seniors requires, it seems, a litmus test of sociality and temporality that is sorely missing, where stereotypes, ageism and neglect collude to deny the elderly personhood and a meaningful sense of self. This book sends a clear message that the provision of basic public health and community social services, the meeting of simple needs such as time for 188

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sufficient home care, time for social relationships to develop between staff and residents, and time provided for health-care workers to wash their hands between patients, should be paramount in our policy makers’ attention. The paradigm of inevitable loss and decline in the aging body moves our social and policy attention away from sustaining and reinforcing those social relationships; it creates a niche market for anti-social prescriptions that dehumanize everyone, both “us” and “them.”

References Barer, M. 2002. “New Opportunities for Old Mistakes.” Health Affairs 169–71. Bassett, R., and Graham, J.E. 2007. “Memorabilities: enduring relationships, memories and abilities in dementia.” Ageing & Society 27 (4): 533–54. Clifford, J., and Marcus, G.E. 1986. Writing Culture: the poetics and politics of ethnography. Berkeley: University of California Press. Evans, R.G., McGrail, K.M., Morgan, S.G., Barer, M.L., and Hertzman, C. 2001. “Apocalypse No: population aging and the future of health care systems.” Canadian Journal on Aging 20, Supp. 1: 160–91. Foucault, M. 1978. The History of Sexuality: an introduction. New York: Pantheon Books. Gee, E.M., and Gutman, G.M. 2001. The Overselling of Population Aging: apocalyptic demography, intergenerational challenges, and social policy. Toronto: Oxford University Press. Godelier, M. 1999. The Enigma of the Gift. Chicago: University of Chicago Press. Graham, J. 2004. Report on CIHR’s Commitment to Psychosocial Qualitative Research. Submitted to Seniors Psychosocial Interest Group towards developing a seniors’ psychosocial research agenda in Canada. Canadian Invitational Symposium on Removing Barriers to the Use of Psychosocial Approaches to Support Seniors’ Mental Health, in Practice, Policy and Research, 2004. Graham, J. 1982. “Friendship and Despair: social relations in a long term care facility in Victoria, B.C.” MA Thesis, University of Victoria. Graham, J., and Bassett, R. 2006. “Reciprocal Relations: the recognition and co-construction of caring with Alzheimer’s Disease.” Journal of Aging Studies 20 (4): 335–49. Lavis, J.M., and Anderson, G.M. 1996. “Appropriateness in Health Care Delivery: definitions, measurement and policy implications.” Canadian Medical Association Journal 154 (3): 321–28. Lakoff, G., and Johnson, M. 1980. Metaphors We Live By. Chicago: University of Chicago Press. Mauss, M. 1990 [1924]. The Gift: forms and functions of exchange in archaic societies. London: Routledge. 189

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McLean, A. 2007. The Person in Dementia: a study of nursing home care in the US. Peterborough, ON: Broadview. Myerhoff, B. 1976. Number Our Days. New York: Touchstone Books. Rabinow, P. 1999. “Artificiality and Enlightenment: from sociobiology to biosociality.” Pp. 407–16 in M. Biagioli (Ed.), The Science Studies Reader. New York and London: Routledge. Schuster, M.A., McGlynn, E.A., and Brook, R.H. 1998. “How good is the quality of health care in the United States?” Millbank Quarterly 76 (4): 517–63. Turner, V.W. 1967. The Forest of Symbols: aspects of Ndembu ritual. Ithaca and London: Cornell University Press. Wagner, R. 1981. The Invention of Culture. Chicago: University of Chicago Press. Watzlawich, P., Beavin Bavelas, J., and Jackson, D.D. 1967. Pragmatics of Human Communication. New York: W.W. Norton & Co.

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Important Web Resources for Students and Researchers

Mega Sites These are sites that list other sites of interest to students, faculty, researchers, seniors, and practitioners. They list hundreds of organizations that are involved with older people, and they generally update their listings annually. However, if the URL for a website is out of date and does not connect, try typing the name of the organization directly into a search engine such as Google or Yahoo. This will usually take you to the new website address. • Aging-Related Websites (compiled as a geriatric social work initiative by Helen Miltiades and Deborah Jacobs and students) http://webspace. ship.edu/socwork/agingsites.htm • The Retirement Research Foundation http://www.rrf.org/agingRelatedWebsites.htm • Resource Centre on Aging, University of California, Berkeley http://socrates.berkeley.edu/~aging/Web.html

Specific Sites These are websites often consulted by beginning researchers because they include some of the most recent research themes and the published results of studies conducted both recently and in the recent past. There is a mixture of government, international, and public-interest research groups (PIRGs) listed below. 191

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• Canadian Institutes of Health Research: Institute of Aging http://www.cihr.ca/e/8671.html This division of the CIHR supports research that promotes healthy aging. The causes, prevention, screening, diagnosis, treatment, support systems, and palliation for a wide range of conditions associated with aging are specifically targeted by the IA. • Global Action on Aging http://www.globalaging.org/ GAA is an international citizen group that works on issues of concern to older people around the world, especially within the parameters of globalization. It also advocates with and for older people, worldwide. GAA carries out research on emerging topics and publishes the results directly, through its own publications and via mass-media news releases. • Help Age International http://www.helpage.org/Researchandpolicy/PensionWatch/ Feasibility/@31404 HAI is a global network of non-profit organizations working with and for disadvantaged older people to improve the quality of their lives. It monitors the status of elderly persons around the world, and publishes and also publicizes the results of studies done by member organizations. • International Federation on Aging http://www.ifa-fiv.org/ The IFA is a non-profit organization, founded in 1973, linking more than 150 associations that represent or serve older persons at the grassroots level in more than 50 countries. The IFA is committed to the dignity, independence, and empowerment of older persons. Through the IFA, individuals and organizations exchange information and ideas, communicate common concerns, share practical applications, and learn from each other’s experience. • International Institute on Ageing http://www.inia.org.mt/publications.html Established in 1987 by the UN Economic and Social Council, the International Institute on Ageing (IIA) monitors the global situation regarding elderly persons and publishes the results of its studies in reports available online. 192

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• US National Institutes of Health: National Institute on Aging http://www.nia.nih.gov/ The NIA supports research on aging and also provides online publications in the areas of health, aging, and support for various aging-related issues. • World Health Organization: health topics, aging http://www.who.int/topics/ageing/en/ The WHO publishes reports on health topics, including aging, which have global rather than regional or national scope.

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Notes on Contributors

Margaret Dorazio-Migliore (PhD, UBC) is a medical anthropologist and interdisciplinary scholar whose work centres on the interactions among gender, age, ethnicity, place and chronic illness. She is currently a co-investigator on a SSHRC study of Italian Canadians titled “Culture, Wellbeing and Sense of Place.” Related passions are cultural complexity, narrative representation, auto/bio/graphy, popular writing, and visual arts. Janice Graham (PhD, Montreal) is a professor and Canada Research Chair in Bioethics, Director of the Qualitative Research Commons & Studio (QuRCS) and of the Technoscience & Regulation Research Unit (www.trru.ca) at Dalhousie University, Halifax, Canada. She is a medical anthropologist interested in science studies, technology assessment, and bioethics. Her work in dementia diagnostics and the treatment of Alzheimer’s disease examines the moral basis of profit when disease is defined as a market opportunity. Her more recent ethnographic research examines safety and efficacy in the regulation of emerging biotherapeutics. She has been mapping the regulatory practices and policies of industry, scientists, and government at Health Canada and international regulatory sites. She held a postdoctoral fellowship in geriatric medicine and neuroepidemiology (1996–98) funded by the Alzheimer’s Society of Canada, the Burwell endowed Research Chair in Medical Anthropology at the University of British Columbia (1998–2002), and a Canadian Institutes of Health Research New Investigator award (1999–2002). She has been a visiting senior fellow, BIOS Centre for the Study of Bioscience, Biomedicine, Biotechnology and Society, London School of Economics and Political Science, observer to scientific and technical meetings of the World Health Organization, and chaired the Health Canada Expert Advisory Panel 195

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on the Special Access Program. Her articles have appeared as book chapters and in The Lancet, American Journal of Epidemiology, Biosocieties, Pharmacogenetics and Genomics, Dementia and Geriatric Cognitive Disorders, Journals of Gerontology, Journal of Aging Studies, Ageing & Society, Philosophy, Psychology and Psychiatry, Journal of Investigative Medicine, Canadian Medical Association Journal, Lancet Neurology, New Genetics and Society, Archives of Neurology, Expert Opinion on Pharmacotherapy, Journal of Neurology, Neurosurgery, and Psychiatry, International Psychogeriatrics, Journal of Clinical Epidemiology, and Neuroepidemiology. Forthcoming research explores the development and introduction of a new conjugate vaccine in sub-Saharan Africa. Christina Holmes (PhD, Dalhousie) did her MA in medical anthropology at the University of Victoria on genetic testing for breast and ovarian cancer susceptibility and her PhD in anthropology at Dalhousie University on how genetically modified plants are seen by the scientists who create them and the globalization of genetic engineering research. Her research has been funded by the BC Health Research Foundation, the Social Science and Humanities Research Council, the International Development Research Council (IDRC), and the Canadian Institute of Health Research. She has recently taught in the Sociology and Social Anthropology Department at Dalhousie and is a collaborator in the Technoscience and Regulation Research Unit there, where she is expanding her research on genetic modification to examine research and regulatory developments relating to molecular (ph)farming, or the creation of biomolecules for pharmaceutical and other uses through plants. Pia Kontos (PhD, Toronto) is a research scientist at the Toronto Rehabilitation Institute, a teaching hospital of the University of Toronto that specializes in adult rehabilitation, long-term and complex continuing care, and is an assistant professor at the Dalla Lana School of Public Health, University of Toronto. Her research interests are in critical gerontology, social theories of the body, selfhood, Alzheimer’s disease, and ethnodrama. She has published articles in numerous journals including Journal of Aging Studies, Ageing and Society, Qualitative Research, Qualitative Health Research, Sociology of Health and Illness, Implementation Science, and Philosophy in the Contemporary World. She has also contributed to several edited volumes, including Old Age and Agency, Ageing and Place: Perspectives, Policy, Practice, and Thinking About Dementia: Culture, Loss and the Anthropology of Senility. Sam Migliore (PhD, McMaster) is a medical and visual anthropologist at Kwantlen Polytechnic University in Surrey, British Columbia, Canada. He has 196

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worked extensively with Italian Canadians, and has also travelled to Italy for additional research. His research has led to the production of numerous articles, several ethnographic films, and two books: Mal’uocchiu: Ambiguity, Evil Eye, and the Language of Distress (University of Toronto Press, 1997), and Italian Lives, Cape Breton Memories (with Evo DiPierro, University College of Cape Breton Press, 1999). He is currently the principal investigator of a SSHRC-funded research project addressing issues related to culture and wellbeing among Italian Canadians in Cape Breton, southern Ontario, and the lower mainland of British Columbia. Robin Oakley (PhD, Toronto) is an associate professor of anthropology in the Department of Sociology and Social Anthropology, Dalhousie University, Halifax Canada. Her research in Steinkopf between 1994 and 2003 focused on the local responses to the lack of state funding for health and welfare, as well as an analysis of the discourses invoked by the state through the twentieth century to reify social production within already overstressed family forms. She has published articles on Steinkopf for Journal of Southern African Studies, University of Toronto Press and Itinerario: Journal of European History, to name a few. Her more recent Shastri-Indo Canadian Institute and SSHRC-funded projects draw again on a generational perspective to analyze the unique medical practices of two cohorts of Tamils practicing the Siddha medical system. Cherry Russell (PhD, Sydney) is a social anthropologist with more than 25 years’ experience in research and teaching in social gerontology. She established Australia’s first graduate education program in the field and has conducted qualitative research on various topics, including social isolation, gender, health, residential environments, poverty, homelessness, and professional practice with older clients. She has particular interest in the application of research to policy, having served on numerous government and non-government advisory bodies and committees on aged care policy and research, including the NSW Consultative Committee on Ageing, the Gerontology Foundation of Australia, and the Research Advisory Committee of the NSW Ageing and Disability Department. Peter Stephenson (PhD, Toronto) has been a member of the Department of Anthropology at the University of Victoria since 1980. He is an anthropologist with research interests in the health of vulnerable people. He has worked with many groups in Europe and Canada, including Turkish migrants living in new communities in the Netherlands, Hutterites living in the Canadian Prairies, refugees to Canada from Vietnam and El Salvador, migrants from India, 197

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several First Nations peoples in British Columbia, and seniors from predominantly English backgrounds living in Victoria. He is also a Michael Smith Foundation researcher at the Centre on Aging. In 2000 he was awarded a visiting scholar fellowship by the Faculty of Health Sciences of the University of Sydney. During 2003–04 he was visiting research professor in social geography and planning studies at the University of Utrecht, Netherlands. In the fall of 2006 he was named an Ashley Fellow at Trent University in Ontario. He has served as president of the Canadian Anthropology Society and was a founding editor of its journal. He was the 1997 recipient of the Weaver-Tremblay award for achievements in applied anthropology in Canada, given by the Canadian Anthropology Society. In the Victoria community he has served on the executive of the Inter-Cultural Association and was a founder of the Victoria Coalition for Survivors of Torture. He is the author of several books and videos, including The Hutterian People (1991) and A Persistent Spirit: towards understanding Aboriginal Health in British Columbia (1995). Alatheia of Moscow will publish a Russian translation of The Hutterian People in 2010 in a series of classic monographs in anthropology. He is principal or sole author of over 60 refereed journal articles and book chapters. Sjaak van der Geest is emeritus professor of medical anthropology at the University of Amsterdam. He conducted fieldwork in Ghana and Cameroon and published books and articles on the following subjects: marriage and kinship, perceptions and practices concerning birth control, witchcraft beliefs, anthropological field research, Ghanaian Highlife songs, missionaries and anthropologists, and various topics in medical anthropology, in particular the cultural context of Western pharmaceuticals in non-Western communities, hospital ethnography, death and funerals, and perceptions of sanitation and waste management. Currently he is doing research into social and cultural meanings of old age in Ghana. Margaret von Faber worked as a nurse and nurse teacher before studying cultural anthropology/non-Western sociology at Leiden University, Netherlands. From 1997 to 2002 she conducted anthropological research on the topic of successful aging from the perspective of 85-year-old inhabitants of the city of Leiden. This research was part of the multidisciplinary Leiden 85-plus Study. At the moment, she has a staff position in a large institution consisting of several nursing homes, homes for the elderly, and home care.

198

Index

Aboriginal land rights, 53–57, 182. See also communal land tenure acceptance. See under successful aging acute-care hospitalization, xiv, 104, 184–85 adequate care, 110–11 going to hospital, 107–8, 114 good care, 109–10 inadequate care, 111–15 intensive care unit (ICU) patients, 105 leaving hospital, 107, 115–17 pain, 106–7, 112 physical environment (of hospitals), 106, 110–11, 114, 118–19 soft areas of care, 120 staff identification, 108–9 acute-care hospitals, xiii hospital-acquired infections, 104–5 structural constraints, 107, 119–20 understaffing, 104, 106, 110–12, 114, 119, 185 AD2000 Collaborative Group, 162 adaptation. See under successful aging adjustment, xi–xii, 17, 27, 34–35, 74, 180 age. See aging; successful aging Age of Novelty, 4, 18 aged-care facilities. See institutions (nursing home or long-term care facility) The Ageing Men’s Health Project, 90–100. See also older men ageism, 9, 106, 111, 118, 188. See also stereotypes

agency, xii, 14, 28, 64, 107, 109, 112, 118 Namaqualand elders, 48 agential powers rooted in a pre-reflective level, 135 aging, x, 9, 78. See also old age; la vecchiaia (old age) as achievement, 42 anti-aging discourse, 4, 6, 67–68, 178 associated with decline (See aging as inevitable decline) biology of, 5 cessation of aging, 7–9 conceptualization of, ix critical theory of, 177 cultural dimensions of, 5, 9, 18, 179 demographic “crisis,” 188 as disease, 6 diversity, 6–7, 64 enemy of youth and beauty, 3 error theories of, 6 evolutionary point of view, 6, 10 feminist discourse on, xiii free radical theory of, 5 Hayflick limit, 6–7 knowledge and experience from, 67 lifespan perspective, 28 linear model leading to “inevitable loss” (See linear model of losses) multidimensional, 160 non-Western and non-modern cultures, 9 as normal process, 7 199

INDEX

not meaningful part of living, 17 not necessarily negative, 67 policy makers perspective on, 179 political economy of, 4 program theories of, 6 social-scientific literature on, 64 successful (See successful aging) value-added productivity among senior citizens, 178 variable embodied experience, 10 as women’s issue, xii, xiii, 87 aging as inevitable decline, x, 4–5, 10–11, 73–74, 78 misses “ups” and “downs” of everyday experience, 64 not true for Namaqualand elders, 48, 60 alcohol problems, 88, 92–97, 99 alderman, 10 altjeriga or “dream time,” 12–13, 179 Alzheimer Disease Assessment Scalecognitive (ADAS-Cog), 156–58 Alzheimer drug trials. See drug trials Alzheimer’s disease, 128, 153. See also dementia AD2000 Collaborative Group, 162 corporate manipulations attending, xv loss of self associated with, xiv, xv, xvii, 126–27 (See also personhood in dementia) mild and moderate, 154 progressive neurodegenerative impairments, 166 scientific rise of (1980s), 155 treatment for, 153–67 (See also dementia care) ancestral rights to land. See Aboriginal land rights anti-aging discourse, 4, 6, 67–68, 178 anti-dementia drugs. See cholinesterase inhibitors (ChEIs) aromatherapy, 165 arrangiarsi, 65, 74–76 Sicilian folktales about, 81n4 assisted-living complexes. See institutions (nursing home or long-term care facility) Australia’s class structure, xiii, 91, 99, 182 auto-ethnography, 65 autonomy and self-determination, 29 200

bad old age, 64, 70–71, 73–74, 180 Basso, Keith, 13 Baster-Missionary council constitution (1870), 49 Basters, 49 belonging, 78 biomedical model of decline, 187 biomedical platforms, 153, 163 biomedical task-oriented approach, 179 biomedicine, 164 bodily expressions of selfhood. See embodied selfhood Bourdieu, P., xiv, 128, 136, 141–43 Brecher, Ferdinand, 49–50, 55–57 la buona vecchiaia, xi, 64, 66, 73, 78. See also successful aging blossoming in 70s and 80s, 72–73, 180 as distinguished from a mala vecchiaia, 68, 79 dynamic nature of meanings attached to, 80 financial security, 69, 71 (See also pensions) health and, 69 positive and respectful relations with family, 70 “burden” on others, 38–39 fear of, 33, 70, 73, 80, 181 C. difficile, 105 Callon, Michel, 154 Canada’s mix of public and private social security, 180 Canada’s reserve system, 54 Canadian Agency for Drugs and Technology in Health, 166 Canadian Coordinating Office For Technology Assessment, 166 Canadian First Nations leaders visit to Namaqualand, 54 Canadian Study of Health and Aging, 187 cancers, 6–7, 31, 34 capitalist economy, 158 caring (residents with Alzheimer’s), 135, 146 affection and physical contact, 134 looking and listening to each other, 134 caring for and treating people with dementia. See dementia care

INDEX

caring for people in acute care hospitals, 110–15, 118, 184 Carstens, Peter, 48, 50 Catarina, Zia, 77–78 cholinesterase inhibitors (ChEIs), xvi, 159 change in criteria for treatment success, 157–58 conflicts of interest, 161–63 effect on cognitive function, 154–55 effect on day-to-day activities, 157 inclusion in provincial formularies, 158 industry-sponsored clinical trials, 155, 162, 187 large and vulnerable market, 160 licensing and approval, 157 market forces affecting, 163–64 (See also pharmaceutical industry) only “modest short-term” benefits, 166 post-market response, 161–62 in treatment of mild and moderate Alzheimer’s disease, 154 class, 88, 91–92, 136, 143, 183 bodily expressions of, 141 class structure of Australian society, 91–92, 99 clinical researchers conflicts of interest, 162 clinical trials. See drug trials Clinician Interview-Based Assessment of Change, 157 Cloete, Charles, 54, 56–57 Cloete, Jan, 53–54 Cloete, Lydia, 47 Cloete, Yappie, 53–54 Cochrane Review, 166 cognition as criteria for diagnosis, 155 as guarantor of personhood, 127 cognitive change creative techniques for coping, 156 early or mild, 166 cognitive decline, 33 fear of, 31, 41 cognitive functioning mental exercise for, 35 cognitive performance measures, 15–18, 148n6, 156–58 cognitive rationalization dominance of, 127, 183

cognitive strategies for coping (Dutch elders), 34–35 colonial project, xi, xvii, 13, 49 communal land tenure, 48, 181 historical knowledge of, 49–52 consciousness, 127 Continuing Medical Education (CME) programs, 166 control. See self-determination creativity, 146, 183 persistence despite cognitive impairment, 130–31, 146 crisis accommodation, 94–96 cultural construction of aging, 5, 9, 18, 179 culture, 65–66 De Beers diamond mines, 54, 56–57 “deadline,” 11 death and dying, considerations about, 33 death as form of pathology, 17 death as normal, 14 dementia. See also Alzheimer’s disease; neurodegenerative disease diagnosis (See diagnosis of dementia) loss of self associated with, xiv, xvii personhood in (See personhood in dementia) treatment for, 153–67 dementia care custodial, xvi depersonalizing tendencies, 144–45 embodied selfhood approach to, 144–46 humanistic approach to, 146 new ethic of, xv, 128, 145–47, 184 dementia drugs. See cholinesterase inhibitors (ChEIs); drug trials Denham, Harman, 5 dependence, 29, 33, 40 deregulation, 165 deRoche, Constance, 65 deRoche, John, 65 Descartes, René, 126–27 diagnosis of dementia, 18 conflicts of interest, 154 criteria for, 155, 157, 161 motivations and profits for, 153 prioritization of cognition, 156 standardized packages for, 156–57 201

INDEX

Dickinson, Emily, “Time and Eternity,” 19 Disability Support pensions, 90, 93 disadvantaged older men. See The Ageing Men’s Health Project; older men dispositions as embodied, 141–42 Doctrine of Aboriginal Title, 54–57, 182. See also communal land tenure Dorazio-Migliore, Margaret, xi, xii, 180–81, 183–84, 195 Dossey, Larry, 18 drama strategy to facilitate new ethic of dementia care, xv, 128, 145–47, 184 dream time, 12–13, 179 dress as marker of class distinction, 143, 148n8 drinking problems. See alcohol problems drug advertising (direct to consumer), 178. See also pharmaceutical industry drug trials, 157–59, 162, 168n6, 187. See also cholinesterase inhibitors (ChEIs) expert evidence, 164 methodological bias, 160 regulating authorities, 161 regulating constraints, 163 scientific and medical accommodation in, 158 treatment-placebo differential, 160–61, 164 Dutch East India Company, 49, 51 Dutch elders. See Leiden 85-plus Study Dutch Reformed Church, 57, 59 Einstein’s “spacetime,” 12 Einstein’s “Theory of General Relativity,” 8 elder, 10 “Elder Friendly Hospital Initiative,” 103–4 elder Netherlanders. See Leiden 85-plus Study Elizabeth II, Queen, 54 embodied knowledge, 184 embodied selfhood, xv, 125–47, 183 basic bodily movement as, 136–38 gestural communication, 132–33, 139, 146 primordial depths of, 136–41 sociability, 138–41 embodied selfhood approach to dementia care practice, 128, 144–46 202

emergence myths of the Hopi, 12 emotional intelligence (EI), 15–17, 40–41 Enlightenment, 4 Ermalinda, Zia, 71–73, 180–81 The Ethnography of Time (Hodges), 10 ethnoperformance, 145. See also drama euthanasia, 33, 38, 41, 181 everyday life, ix, xvi–xvii, 77, 79, 156–57, 162–63, 181, 183 executive functions, x added to dementia rating scale, 157 class hegemony in label, 168n4 expert evidence, construction of, 164 Expressions of Personhood in Alzheimer’s (theatre production), 145 expressions of preference (residents with Alzheimer’s) avoiding unpleasantness, 128, 130 on food, 129–30 on seating arrangements, 129 family, 37–38, 68, 70–72, 79 after hospitalization, 116 care of elderly, 70, 73–74, 80, 181 for emotional (not physical) support, 29 fear of burdening, 73 (See also “burden” on others) loving relationship, 73 Featherstone, M., 4 feminist discourse on aging, xiii financial security, xii, 9, 68–70, 72–73, 79, 96, 180. See also pensions economic losses, xiii Fontaine, Phil, 54 for-profit health-maintenance organizations, 154 Foucault, Michel, 154, 187 free-trade loophole, 154 Gee, E.M., 187 gendered public policies, 98–99 gendering of disadvantage, 89 gerontocratic agrarian order, 48, 50 gerontological literature, 64, 67, 79, 88 gerontology, 5, 10, 16–17 geslagte, 52–53 gestural communication, 132–33, 139, 146 God, 63, 76 going to hospital, 107

INDEX

long waits in emergency, 108, 114 privacy issues, 108 Good, MaryJo DelVecchio, 164 good care, 118, 185 good old age. See la buona vecchiaia Graham, Janice, x, xiv–xvii, 41, 195 Great Depression, 90, 96–97 Greenhouse, C., 12, 14 Gruppo di Preghiera, 76–78 therapeutic landscape, 78 Gutman, G.M., 187 habitus, xiv, 128, 141–42, 160 Hall, E.T., 11–12, 20n4 Hamilton, William D., 8 “Hamilton’s Forces,” 8 Hayflick limit, 6–7 health, 68, 70, 75, 79 importance in successful aging, 28 maintenance of basic functions and absence of severe pain, 34 health and social policies, 79 health problems dependence and, 33 importance of adapting to, 31 must be accepted, 34, 39 part of “normal aging,” 32 require adjustment in social relationships, 38 health-care system, 69, 135, 166, 188 “healthy aging,” 4, 17–18. See also successful aging historical knowledge. See under Namaqualand elders HIV/AIDS, 48, 60n5, 61n5 Hodges, Matt, The Ethnography of Time, 10 Holmes, Christina, xiii, xiv, 184–85, 196 “home” or assisted-living complex. See institutions (nursing home or long-term care facility) home ownership. See under housing home services for the elderly, 29, 187–88 homosexuals. See sexual orientation hope, political economy of, 164–65, 183 hospital-acquired infections, 104–5, 185 hospitalization, increased risk from, xiii, xiv, 104 hospitalization narratives, 103–20

housing, 88. See also institutions (nursing home or long-term care facility) home ownership, 95–96, 99, 182 homelessness, 89, 91 living in one’s own home, 63, 68, 73, 81, 104, 181 public housing, 93–94, 97–98 work-related accommodation, 96, 99 housing stability importance in old age, 96 marriage as significant factor in, 96 night shelters, 97 (See also crisis accommodation) humanistic approach to dementia care practice, 146 Hutterites in Western Canada, 14 “hyper-cognitive” world, 155 Illness, Crisis & Loss, 81n2 imbalances of power, ix, xiv imperialist civilizations, 3. See also colonial project impression management. See also noncomplaining maintain cheerful appearance to preserve social contacts, 32, 39 independence, 29, 72, 179–80. See also living in one’s own home “individual deficit” model, 89 industry-sponsored clinical trials. See drug trials; pharmaceutical industry industry-sponsored Continuing Medical Education (CME) programs, 166 inequalities among older men, xiii, 88, 98–99 inevitability, ix. See also aging as inevitable decline suggestion of passive victims, 79 inevitable path of declining health (associated with hospitalization), 104 infections, risk of. See hospital-acquired infections institutions (nursing home or long-term care facility), xiii, xvii, 73, 80–81, 104, 128, 184–85. See also acute-care hospitals; crisis accommodation associated with mala vecchiaia, 73–74 single older men, 93–94 transforming into a home, 74–76 interviews, 65, 90 203

INDEX

Italian family tradition of caring for elders at home, 70, 80, 181 Italian-Canadian seniors, xi, 180 active participants in aging process, 79 aging and well-being, 63–81 culturally appropriate assisted-living complexes, 73 diversity, 66, 79 Jackson, Michael, 3 Johnson, M., 187 Katz, Stephen, 4–5 Khoisan peoples, 49 kinship networks, xi, 54. See also lineage Kitwood, T., 144 Kleinzee (De Beers diamond mines), 50–51 knowledge of being Nama, 57–57–59 knowledge of land use and lineage, 52–57 Kontos, Pia, xiv, xv, xvi, 41, 181, 183–84, 186, 196 Lakoff, G., Metaphors We Live By, 187 land-claims, 54, 56 traditional knowledge used in, 57, 60 language (native language), 75 Lasch, Christopher, 3 late life, 8–9 late-life disadvantage, 91 late-life vulnerability, 88 causes and consequences, 100 Latour, Bruno, 154 Law, John, 154 leaving hospital, 107, 115–17 constraints about stay (feeling rushed), 116 importance of family, 116 uncertainty about release times, 115 Leiden (town of), 28–29 Leiden 85-plus Study, xi, 27–42, 186 anthropological approach, 30 autonomy and self-determination (values), 179–88 biomedical quantitative part, 30 contact with children and other relatives, 29, 37–38 etic and emic perceptions of hearing loss, 34 204

explaining away disappointment, 40 “impression management,” 32, 39 interviews, 30, 34 managing risks, 33 perceptions of feeling healthy, 38 strategies directed at managing health in old age, 34–36 life stages, 8 Linda, Zia, 73–74, 80 lineage, 52–53 relationships to citizenship and land, 54 linear model of losses, xii, 64, 180. See also aging as inevitable decline linear M-Time, 12 linear time, x, 10, 15, 18 listening (importance of), 79 “Listening Project,” 103, 105–7. See also acute-care hospitalization being in hospitals, 108–15 going to hospital, 108 leaving hospital, 115–17 low-tech solutions, 117–20 living in one’s own home, 63, 68, 73, 104, 181. See also independence support for, 81 Local Government Area of South Sydney, 90 Locke, John, 127, 183 Lockean representation of self, 127 loneliness, 31, 40–41 longevity (factors influencing), 9 long-term care facilities. See institutions (nursing home or long-term care facility) loss, 18, 104, 127, 177 dynamic nature of meanings attached to, 80 economic loss, xiii exaggerated emphasis on, 64 narrow and negative view of aging, 79 not reserved for the old, 79, 181 turning into gains, 41 low-tech solutions, 166, 185 Lucia, Zia, 69, 71 Lukas, Oom, 58 Madonna, the, 76 “make do” or “get by,” 65, 76, 181 la mala vecchiaia (bad old age), 64 absence of family support, 70–71

INDEX

associated with “homes,” 73–74 lack of respect, 71 marital status, 91, 93 divorce or separation, 95 life-long single status, 88, 94–95 relationship to home ownership, 95–96 relationship to occupational status and income, 96, 99 market forces employment and, 98–99 housing and, 98–99 masculine lifestyle, 99 masculine occupational community, 92, 99 effect on marital status, 95 “mateship” based on heavy drinking, 99 Mattingly, Cheryl, 164 McLean, Athena, The Person in Dementia, 179 medical intervention prolonging life, 33, 38, 41, 181 memorabilities, 156, 183 memory, 162 as guarantor of personhood, 127 loss in persons with Alzheimer’s disease, 155–56 mental health, 68 mental illness, 88, 90, 94 Merleau-Ponty, M., xiv, 128, 136–39, 141 Phenomenology of Perception, 136 Metaphors We Live By (Lakoff), 187 Migliore, Sam, xi–xii, 180–81, 183–84, 196 migrant wage work, 48, 182 effect on families, 58 impact on gender norms, 50 metropolitan, cosmopolitan life, 51 Mini Mental State Examination (MMSE), 148n6, 156–57 Mission Stations and Communal Reserves Act (1909), 50 Monochromatic Time, or M-Time, 14, 20n4 alternatives to, 14 in industrial societies, 11 Moody, Harry, 164 moral economy, 4, 11 multinational corporations. See pharmaceutical industry Myerhoff, Barbara, 183 myth of demographic “crisis” of aging, 188

Nama language, 58–59 Nama medicines, 48, 57–58 Nama roundhouses, 57–59 Nama women mystical ability, 59 traditionally high status, 48 Namaqualand reserve system, 54 ticket of occupation, 50 Namaqualand Burgers Verenginde (NBV), 54–55 Namaqualand elders, 47–60. See also South Africa; Steinkopf agency, 48 cash economy (migrant wage work), 48, 50–51, 182 communal land base and rights of citizenship, 47–49 historical knowledge, 50 knowledge from working away, 51 knowledge of land use and lineage, 52–57, 60, 182 knowledge of Namaness and Nama medicines, 48, 57, 59, 182 loans to young people, 51–52 local, non–family-based forms of social reproduction, 48 luxury of returning home from wage labour, 51 old age home and, 58, 60 pensions, 47–48, 51–52, 180 positive local experience of aging, 48 sense of rightful entitlement, 60 traditional knowledge to engage in modern land claims, 60, 182 value and high status, 50 narcissism, 3–4 native anthropology, 65 Nature Medicine, 155 neoliberal ideologies, 48, 178 Netherlands. See also Leiden 85-plus Study independent living as long as possible, 29 older people relatively privileged, 29 welfare state, 29 neurodegenerative disease, 16. See also Alzheimer’s disease; dementia “New China,” 3 “the New World,” 13 “new world order,” 3 205

INDEX

newness. See novelty or newness Newtonian physics, 10, 12 Nino, Zio, 67 noise in hospital, 106, 113 non-complaining, 32, 41. See also impression management in acute care hospitals, 105–6 social strategy for dealing with health problems, 40 non-familial social reproduction, 58 non-pharmacological treatments (NPT), 165 non-reflective intentionality, 138 non-representational intentionality, 128, 136, 148n7 nonverbal communication, xv, 132–33, 139, 146 normal aging, xvii, 16, 32 nosocomial infections. See hospitalacquired infections novelty or newness, x, 4, 10–12, 15–17 Age of Novelty, 4, 18 cultural obsession with, 18 now, 14, 18 “now-ness,” 12 Oakley, Robin, xi, 180–82, 197 off-label prescribing practices (dementia drugs), 161 old age. See also aging accomplishment, 67 ambiguity of, 41 bad old age, 64, 70–71, 73–74, 180 la buona vecchiaia, xi, 64, 66, 68–73, 78–80, 180 variable meanings, 66–67, 79–80 old age home (in Steinkopf) affirmation of humanism, 60 non-familial social reproduction, 58 older adults perception of selves as valuable family members, 79 older men, 182. See also The Ageing Men’s Health Project class, 91–92 homelessness, 89, 91 inequality among, xiii, 88, 98–99 inner-city subculture, 95, 182 “invisibility” in social research, 88 206

masculine occupational community, 92, 95, 99 poverty, 96 as privileged gerontocracy, 88 relative comfort compared to women, 87 single, 88–89 (See also marital status) transient lifestyle of casual jobs, 96 openness, 16 “Other” “older people” as, 64 outgoing behaviour, x pain, 106–7, 112–13 participant observation, xiv, 61n5, 65, 90, 128 partnership status. See marital status patient rights “to decide treatment options,” 164 pax Romana, 3 “pay” of old-age pension, 47–48, 52 peace of mind, 69 pensions, 47–48, 71, 98, 180, 182 differential ages of pension eligibility for men and women, 99 Disability Support pensions, 90, 93 power and status from, 47–48, 51–52 person Locke’s sense of, 127 The Person in Dementia (McLean), 179 personality, concept of, 15 personality psychology, 16 person-centred dementia care, 128 personhood in dementia, xv, xvii, 127–28, 144–45, 184 rethinking, xv standardized testing and, 157 persons diagnosed with Alzheimer’s disease, 166. See also Alzheimer’s disease risks involved, 153 treatment as objects, 144 person-sustaining approach, 179 petrosomatoglyphs, 13 pharmaceutical industry, 165 control of clinical trials, 155, 159, 162 marketing and educational materials, 159, 161 profit-driven promotion of treatments, xv, xvi

INDEX

successful treatment as “lessening losses,” xvii targeting early cognitive impairment, 166 phenomenology, xiv, 128 Phenomenology of Perception (MerleauPonty), 136 physical comfort, 110–11 physical environment (of hospitals), 106–7, 110–11, 114, 118–19 physical manners as class markers, 143 place. See also space, physical and figurative sacred places, 11, 13 place, sense of, 65 “place” and “home” in well-being, 73 place and time fusion, 13 place (old neighbourhood) in good life, 75 placebo, 160–61, 164 place-making (or emplacement), 13 Poirier, Judes, 158 political economy of aging, 4 political economy of hope, 164–65, 183 political economy of well-being, 100, 183 Polychromatic Time (P-Time), 11, 20n4 Port Nolloth (crayfish industry and alluvial diamond industry), 50 positivist science, 126, 158 post-market response to dementia drugs, 161–62 postmodernity, 11 prayer groups, 76–77 pre-reflective body, 140 coordination of visual, tactile, and motor aspects, 137 fundamental to selfhood, 128 socio-cultural dimension, 136 pre-reflective level of experience, 135–36 primordial level of experience, 135–37 psychiatric disorders, 88, 90, 94 public-health services, 69, 185, 188 public housing, 93–94, 97 gendered assumptions on, 98 publicly funded research, 165 quality of life, 165 quiet acceptance in culture that values only novelty, 16–17

racism, 9 rationality as guarantor of personhood, 127 reflective capabilities, 15 religion, 68, 70, 76–79, 181 remittances, 47, 50–51 respect, xiii, 67, 70–71, 73, 107, 109, 120, 128, 144, 147, 178, 180–81, 185 responders to Alzheimer drug treatment, 158, 168n6 changes in definition, 159 Richie, Lionel, 3 Rita, Zia, 76–78 Roses, Allen, 8, 168n5 Rosina, Zia, 64, 67–68, 76 determination to remain in own home, 63, 70 Russell, Cherry, xiii, 183, 197 sacred places, 11, 13 science-studies approach, 154 self anthropological studies, 4 Lockean representation of, 127 self-determination, ix, 14 control, 35, 39 at end of life, 38 (See also medical intervention prolonging life) selfhood, 183 in corporeal and non-reflective intentionality, 138 (See also embodied selfhood) existential expressiveness of the body, 140 loss of in Alzheimer’s, xiv, xv, xvii, 126–27 as mark of class distinction, 143–44 senior/staff interactions (hospitals), 106–7, 110–13 frustration with slow reaction time, 118 importance of, 117 seniors in acute-care hospitals. See acutecare hospitalization separation of mind and body, 126–27 serenity, 16–17 sexual orientation, 94 effect on partnership status, 89 sleeplessness, 113 social contacts, xii, 75, 181 importance in successful aging, vii–viii, 27–28, 31, 36, 100 207

INDEX

impression management, 32, 39 well-being in old age, 36 social etiquette (residents with Alzheimer’s), 132, 142, 146 as marker of class distinction, 143 social security, 180–81. See also pensions; welfare state social services, 187 social support, 37, 79 The Sopranos (TV series), 81n3 South Africa Afrikaans apartheid era, 48, 182 British segregationist government, 48 changing political economy, 47–48 colonial intrusion, 49 industrial capitalism, 48 Mission Stations and Communal Reserves Act (1909), 50 neoliberal “rainbow” nationhood, 48 pension provisions, 51, 182 reserve boundaries, 53 Rural Coloured Areas Act (1963), 53 South Africa Nama elders. See Namaqualand elders space, physical and figurative, 95. See also place importance to health and well-being, 78, 93 spacetime, 12, 18 Spirit Beings, 13 standardized testing for dementia. See cognitive performance measures stare bene (being well), 69 Steinkopf, 181. See also Namaqualand elders communal land tenure and local citizenship, 47–49 land losses, 50, 53, 55–56 local, non–family-based forms of social reproduction, 48 migrant wage work, 50 Nama material culture, 57 old age home, 58 place to return to with citizenship rights, 51 remittances, 50 significance of geslagte (lineage), 52–53 ticket of occupation, 50 Stephenson, Peter, x, xiii–xv, xvii, 28, 79, 179, 184–85, 197 208

stereotypes seniors as “fussy” or “demanding,” 106, 112, 118, 185 (See also ageism) strokes, 75 successful aging, ix–x, 17–18, 181, 186 accepting losses with good spirit, 16–17, 27, 35 adaptation to changes, 28, 32, 36, 74 adjustment, xi–xii, 17, 27, 35, 74, 180 being content with one’s life, 31 biomedical measurement of, 30 failure of some men, 88 (See also older men) individual feelings of well-being, 28 older people’s view of vs. biomedical measurement, 30 older people’s view of vs. health professionals, 27–28, 40 positive local experience of, 48 social world as primary mediator of, 27–28, 31, 36, 100 strategy of not complaining, 32, 40–41 turning losses into gains, 28 “work of art,” 179 successful aging movement (20th c.), 4 super-bugs. See hospital-acquired infections surgery, 104 Taylor, C., 127 telomerase, 6 telomeres, 6 la terza età, 67–68 “them” and “us,” 179 theoretical biology, 5 “therapeutic emplotment,” 164 therapeutic landscape, 78, 181 the “third age,” 67–68 third gender category (Namaqualand), 58–59 time, 4, 20n4 colonial temporal rationales, 13 as commodity, 11 critical understanding, 10 “dream time,” 12–13, 179 eternal present, 13 linear notion of, x, 5, 15, 18 (See also linear model of losses) “messianic time,” 14 Monochromatic Time, or M-Time, 11, 14, 20n4

INDEX

obsession with punctuality, 12 Polychromatic Time (P-Time), 11 in post-industrial and industrial cultures, 10 quality of, 14 relativist view of, 7, 10, 18 spatial aspect of, 13–14 “Time and Eternity” (Dickinson), 19 “time is money,” 11 “time is of the essence,” 11 time sickness, 18 product of the Age of Novelty, 19 “to make do” or “get by,” 65, 74–76. See also arrangiarsi “toileting,” 114, 119 traditional knowledge, xi, xii, 48, 57, 59, 182 transparency, 154 treatment-placebo differential, 160–61, 164 treatment for dementia, 153–67 tuberculosis, 48, 60n5 Turner, Victor, 187 Tutu, Desmond, 54 UN Decade of Aboriginal Peoples, 57 understaffing, 104, 106–7, 110–12, 114, 119, 185 unemployment benefits, 92–93 unskilled or semi-skilled blue-collar occupations, 91, 95 US Food and Drug Administration (FDA), 160–61 approval of dementia drugs, 157 “fatal erosion of integrity,” 165 value-added productivity among senior citizens, 178 van der Geest, Sjaak, xi, 79, 179–80, 185–86, 198 la vecchiaia (old age) an accomplishment to be proud of, 68 as carogna, 67 meanings for Italian Canadians, 64 variable meanings, 66–67, 79–80 “la vecchiaia fa schierzi bruti,” 67

veneration of the old, 9, 14 Victoria, Queen, 54, 56 Vietnam War veterans, 90 Villa Carital in Vancouver, 73 Villa Colombo in Toronto, 73 Vincenzo, Zio, 74–76 Virgin Mary, 76 von Faber, Margaret, xi, 79, 179–80, 185–86, 198 vulnerability, notion of, 32 “watch,” 11 watches, 12, 20n5 “We Are the World” (1985), 4 We Have Such Things at Home (1997), 61n9 welfare state, 29, 179, 188 well-being, 65, 78, 180, 183, 188 Gruppo di Preghiera, 76–78 importance in successful aging, 28 “place” and “home” in, 73 political economy of, 100, 183 selective comparison with peers, 34–35, 40 social contacts, 36–37 Whorf, Benjamin Lee, 13 widowed, 95, 97 Winblad criteria, 158, 162, 165 wisdom, 9, 17–18, 178 work dangerous work lives, xvii “masculine occupational community,” 92, 95, 99 migrant wage work, 48, 50–51 reasons for stopping, 92–93 transient lifestyle of casual jobs, 96 unskilled or semi-skilled blue-collar occupations, 91, 98 working class, 91, 99 working-class culture, 92 work-related accommodation, 96, 99 World War II, 90 Yolanda, Zia, 69 youth culture, 4

209