|Author:||Jessica C. Robbins|
|Title:||"Older Americans" and Alzheimer's Disease: Citizenship and Subjectivity in Contested Time|
|Publication Info:||Ann Arbor, MI: MPublishing, University of Michigan Library
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"Older Americans" and Alzheimer's Disease: Citizenship and Subjectivity in Contested Time
Jessica C. Robbins
vol. 17, no. 1, 2008
Issue title: New Directions in Medical Anthropology
“Older Americans” and Alzheimer’s Disease: Citizenship and Subjectivities in Contested Time1
Department of Anthropology, University of Michigan
I began writing this paper with the conviction that there is something fundamental about Alzheimer’s disease in the United States that marks it as a unique illness, a particular and feared way of aging. I saw this manifest in my personal and professional experiences with the illness. The suffering of both my paternal grandmother, who has Alzheimer’s, and my family indicated to me the particularities of this illness, while at the same time, working with many older people in an office job highlighted for me the category of Alzheimer’s as differently marked within the experiences of many older people. In all this, however, I noticed that the experience of the person with Alzheimer’s was not relevant or even present. To me, this was a fundamentally inhuman aspect of this illness, and I saw in ethnography the possibility of a remedy. Therefore, my intention in writing this paper was to argue that ethnography is necessary to fully understand this aspect of human life, and moreover, that the practice of ethnography could have real implications for restoring humanity to the person with Alzheimer’s. A remedy, then, in anthropology: remedial for both the anthropologist and her subject.
After reading and reflecting upon the recent (within the last ten years or so) anthropological literature on aging, however, numerous problems with this project quickly arose. The problems with my initial research project resembled those presented by Lawrence Cohen (1994) in his critical review of the state of anthropology of aging, or “geroanthropology,” as he prefers to call it. These epistemological difficulties appear in the form of several problematically naturalized tropes that pervade geroanthropological research and serve to erase the connection between the discipline of anthropology and its newly constructed salvatory subdiscipline (Cohen 1994:140–146). According to Cohen, this trend in geroanthropology eliminates a series of questions encompassing rationalities, phenomenology, and hermeneutics, which are central to the broader discipline of anthropology (1994:151–155). I will briefly discuss Cohen’s use of these theoretical concepts since they will reappear throughout this paper.
By “rationalities” Cohen means the ways that studying old age is connected to larger issues of “ideologies, nationalisms, modernities, and gender constructions” in particular contexts (1994:152). This approach requires attention to the ways that these normative ideals are constructed. Cohen argues that a phenomenological approach which takes seriously experiences of the body in considerations of the aging self can help ameliorate the lack of understanding of aging as it is “differentially constituted across class and cultural and other axes of social difference” (1994:152). By paying attention to particular experiences of the body Cohen hopes to ground his work in particular local worlds and in so doing, to arrive at new understandings that problematize aging. Finally, the concern with hermeneutics has to do here with the intergenerational relations between the anthropologist and the old people she studies.2 Cohen argues that it is essential for geroanthropology to consider how it interprets and presents the experiences of old people (1994:154–155). Without these concerns, the geroanthropological project, and my own as well, remain shallow and problematic.
Therefore, this paper is a reformulation of the project I set out to accomplish. Rather than critically investigate a multitude of constructions of the Alzheimer’s self with an eye towards a salvatory ethnography, I have moved towards what is perhaps a more basic anthropological project. Instead of beginning with the solution already in mind, I have modified my questions to allow for the possibility of findings that contradict my personal and professional experiences of Alzheimer’s. To do this, it is necessary to move away from my own experiences and towards the possibilities of broader perspectives. Hence: what is the context of Alzheimer’s disease in the United States? In what discursive situations do people with Alzheimer’s negotiate their experience? Inasmuch as Alzheimer’s can be understood as problematic aging, what are the normative ideals of aging towards which people strive? Against what is the construction of this normative ideal taking place?
In order to answer these questions in the context of this paper, it is necessary to limit my sources, so I have chosen material that would be both circumscribed and productive. Towards this end, I will analyze the final report of the 1995 White House Conference on Aging (WHCoA) (1996). In this analysis I seek to understand the construction of the ideal of the normative old person and the relation of this old person to himself, others, and the state. Following Cohen (1994) in trying to elucidate the construction of particular rationalities, I will draw heavily on the work of Michel Foucault (1977, 1978, 2003). After analyzing the WHCoA to gain a perspective on normative aging, I will then consider where people with Alzheimer’s fit in this map of normative aging. Building on the work of Giorgio Agamben (1998), I will view Alzheimer’s as the exception inherent in the normative construction of aging. I will then use ethnographic examples from the research of Pia Kontos (2006), Athena McLean (2006), and Roma Chatterji (1998) to suggest new directions for anthropological work. These all provide examples of the possibilities of work in a “phenomenological mode” (Bledsoe 2002:60), for I hope to show that Cohen’s call for this approach can be useful in geroanthropology. I will briefly address Cohen’s concern with hermeneutics in my conclusion, although this would be more appropriate if I were carrying out ethnographic work. This combination of critical theoretical and ethnographic approaches will suggest new directions for the anthropological study of old age.
The 1995 White House Conference on Aging (WHCoA): the construction of the biopolitical subject
What is the White House Conference on Aging (WHCoA) and why is it important for understanding aging in the United States? Convened by the president of the United States once a decade since the first WHCoA in 1961 (WHCoA 1996:138), the WHCoA aims to set a policy on aging that is “worthy of our great nation” (WHCoA 1996:26) in order to help “America prepar[e] for the 21st century” (WHCoA 1996:7) and to leave an “enduring legacy” (WHCoA 1996:12). This national rhetoric mirrors the goals of the conference, in which over 2,000 civilian delegates participated. After holding various pre–conference “grassroot events” (WHCoA 1996:152–153), each state and territory selected a number of representatives proportional both to its total population and its population over the age of 55. Additionally, proportional representation within the delegates from each state was sought in terms of race and ethnicity (African American, Asian Pacific, Hispanic, and Native American) and geography (rural and urban), while at least 50 percent of delegates were over the age of 55, and 50 percent of delegates were women (WHCoA 1996:154–156).
Significant action has resulted from these conferences, often in the form of legislation, such as the “coalescence” of the America Association of Retired Persons (AARP) and the creation of Medicare and Medicaid following the 1961 conference (WHCoA 1996:138). The inclusion of at least 2,000 delegates to each conference (there has been a WHCoA in 1961, 1971, 1981, 1995, and 20053) also broadens the impact of the conference (WHCoA 1996:137–140). Therefore, the text which results from this conference is significant and warrants further investigation. In no way is my analysis of this text a substitute for an analysis of the conference itself, but because this text comprises an authoritative aspect of the discourse surrounding an constituting aging, this report will be useful in illustrating the construction of the ideal old subject.
Here, the power of the state is at once centralized and diffuse. The centralized power which produces this report defines its subjects and its responsibilities, yet these subjects must enact these responsibilities in a variety of locations and contexts. This multiplicity of contexts is evident both in the number of delegates (2,217) who attended the conference and in the number of people (over 125,000) who attended the many events (over 1,000) that took place nationally before and after the conference (WHCoA 1996:12). These local meetings constitute the diffuse power structure in which old subjects are made. For while these local “assemblages of power” (Ong 2003) constitute and are constituted by individual subjects, they also exist in a discursive relation to institutions larger than themselves. Therefore, considering these local contexts is necessary for understanding the manufacturing of actual subjects so that we can “see the structures of power as global strategies that traverse and use local tactics of domination” (Foucault 2003:46), but since I do not have access to these meetings, considering this text is also important. The larger normative discourse is still a worthwhile object of investigation, for it too forms part of the discourse in which old subjectivities come to exist and matter.
A massive document, the final report of the WHCoA is physically authoritative. Beginning with a letter to President Clinton from Donna Shalala, then the Secretary of Health and Human Services (WHCoA 1996:1), the report gains credibility through the frequent use of images of the president, vice–president, and other federal officials. Combined with the continuous presence of these elected officials, the words “1995 White House Conference on Aging” appear next to every page number and associate the report and the conference with the sovereignty of the federal government. It is through this sovereignty that the dramatic style of the text, as demonstrated above, gains credibility and legitimacy. And while it is true that power does not flow only from the top down (Foucault 1978:94), it is also true that the objective manifestation of the federal government in these particular ways comes to stand for a set of authoritative practices that reinforce the authority of the federal government (Bourdieu 1977).
The stated goals of the conference are to “lay the political, policy, and moral groundwork” necessary to face “the impending gerontological revolution” (WHCoA 1996:17). This revolution is a demographic one. We learn that we are already in the midst of an aging crisis, as there are nearly 11 times more people over the age of 65 in 1995 than there were in 1900 (WHCoA 1996:163). This crisis is growing as the number of people over 65 in 2030 is projected to be twice what it was in 1978 (WHCoA 1996:214). These selective demographic facts, which consider absolute numbers rather than the proportion of people over age 65, add to the sense of crisis and revolution.4 In the words of Clinton, this “older America” presents a “challenge” (WHCoA 1996:10), and indeed, this demographic shift is constantly problematic throughout the text.5
This definition of the population in terms of numbers explicitly demonstrates what Foucault refers to as bio-power. Clearly concerned with “foster[ing] life” (Foucault 1978:138), throughout this report the government constructs its power to “invest life through and through” (Foucault 1978:139) by detailing the ways in which it will administer the bodies of the old. Indeed, the architects of the conference frame their project in these very terms. In setting out the various “challenges” the conference was designed to address, different types of target groups are specified. These “challenges” and possible solutions exist at the level of the nation, the states, communities, families, businesses, individuals, “younger Americans,” and finally, “older Americans” (WHCoA 1996:20–21). The intervention of the state is both possible and appropriate at every level of human organization; this “uniformity of the apparatus” (Foucault 1978:84) of power is quite explicit in this document.
The use of demographic statistics as quoted above provide an example of Foucault’s biopolitical state, but they also present a problem for the state as well. Indeed, if the present and future “older Americans” that are projected in numbers emerge to the state as problematic, the number of their deaths does too. Consequently, although state policies do not always foster life and can indeed hasten death, proliferation of methods and forms of administration over the old body turns the old age into a “field of intervention” (Foucault 2003:244). Furthermore, if we follow Foucault in arguing that “death is power’s limit, the moment that escapes it” (Foucault 1978:138), yet is “something that slips into life” and “perpetually gnaws at it” (Foucault 2003:244)6, then once can understand how the economic concern that is continually present in the WHCoA report reveals the state’s intervention partially to be a concern for individuals who no longer have the capacity to be economic producers. The multiplicity of levels of intervention enumerated above, then, become logical when understood as a way for the state to manage the dangerous lives of its old subjects.
A closer look at the ways the state tries to manage old bodies and citizens will be instructive for learning both about the nature of state sovereignty and the types of old bodies it produces. The most relevant target population for this consideration is the group called “older Americans,” who are defined solely by their age and status as Americans. Indeed, the term “older Americans” appears throughout the report, creating a necessary and immutable connection between the old body and the nation. This also has the effect of excluding from discussion or care any non–citizens living within the borders of the United States.
The group labeled “older Americans” comes into focus in the following passage. This excerpt is from the chapter entitled “National Policy on Aging: ‘The American Community: A Vision for the Future.’” This is the last section under the heading “Challenges,” which identifies different groups that face the challenges of an aging population.
For older Americans—In every community, older persons continue to provide leadership in their civic organizations and religious congregations. Older persons are not only part of the challenge, but they are also the answer to many of the human resource needs that face an aging society. Older persons prize the opportunity to confront issues facing their communities and to participate in the democratic process. Older persons know first–hand how their children and communities are affected by the actions and inactions of government. The children of the Great Depression and World War II era understand the importance and necessity of investing in children and middle–aged citizens so that they may enjoy a better old age. Everyone has a stake in the dramatic aging of our populace as well as a responsibility to persons in all age groups. [1996:21, 23]
There is both a generalization and specification inherent in this language; old people, who are referred to as “older persons,” thereby labeling a group of individuals, are present in “every community,” thereby locating them both nationally and particularly. Not only are they the problem, but they are the solution as well. By identifying older persons as “the answer” to “the challenge” that they themselves present, the state makes individuals responsible for the problems they pose to society. These problems can be characterized in terms of “human resources.” The old are a problem because they can become useless and burdensome to society. Recuperation is possible, however, and must be enacted through individual responsibility, which is bound up with citizenship inasmuch as it is part of “the democratic process.” And because the old are just that—old—they can be located temporally. Since they lived during the Great Depression and World War II as children, as adults they now have a particular knowledge of the past that becomes useful to society. The past can be recuperated in the present and the future; temporal continuity is possible for both the nation and the self. It is exactly this temporal continuity that the experience of Alzheimer’s jeopardizes. I will return to this point in a later section of this paper.
Representations of ‘older Americans’: images of citizenship
Before discussing the temporality of aging, I would like to examine the representations of older people in the text. Where are the old people in this document? The immediate answer is ‘in the pictures.’ For throughout the text are many pictures: of government officials, guest speakers, and the nameless old—those without any identifying caption.7 It is these nameless old in whom I am interested, for they can be taken to “represent old people in general,” which is not true of “portraits of particular people who happen to be at the end of long lives” (Bytheway 2003:31). Yet while it first seems that these old bodies are present throughout the text, we find upon closer examination that they are actually only present in certain parts of the text. That is, they exist almost exclusively in the section concerning “additional initiatives” (WHCoA 1996:183–218), which were projects that fell outside the official categories of “resolution” and “implementation,” and the section concerning the “text of the resolutions” (WHCoA 1996:285–366), which contains the wording of the resolutions of each group of delegates. This placement of the image of the old body within the text corresponds to its position in the discursive structure of the normative old person. Since the old body can and does have multivalent properties, including the possibility of death, it is dangerous for the state to allow this flexible sign into its most official and public discourse, as represented by the opening section, “Vision and Recommendations” (WHCoA 1996:17–136). By keeping these images and their dangerous potentialities primarily bounded within the confines of the detailed and more obscure sections of the report, the state prevents this ambiguity from entering its most official discourse.
Having considered their location, what can we say about the images themselves? How are these anonymous people represented, and how do these representations contribute to the formation of the normative ‘older American’? For while these images are presumably of delegates and go a long ways towards making individuals feel included in a massive national project, these images could be doing something else as well. The people photographed are shown participating in a variety of actions: writing, reading, talking, laughing, eating, voting, attending meetings, and attending parties—in short, they are all actions through which they are constituted as the ideal responsible “older American,” helping to take part in creating the vision of their own and the nation’s future. It is noteworthy as well that these are all actions; there are only three pictures (WHCoA 1996:193, 194, 346) out of all 48 caption-less photographs which depict a lone person not engaged either with an activity or with someone out of the camera’s range. Only one person is shown who has an obvious physical disability (WHCoA 1996:188). This man in a wheelchair is flanked by other old people; together, the three of them consider a set of documents which presumably have to do with the statement of principles on aging communities with disabilities that is reproduced on this page.
By presenting images which overwhelmingly represent the old body as active and socially engaged, the WHCoA report constructs the ideal old body as active and socially engaged in civic responsibilities. Moreover, these bodies appear predominantly healthy. Even the lone person with an observable disability is still maintaining his citizenship by participating in the democratic process. These images, then, correlate to other messages present in the content of the report: they are images of the ideal ‘older American.’ If we follow Nancy Scheper-Hughes and Margaret Lock in their formulation of the social body, who point out “the frequently encountered symbolic equations between conceptions of the healthy body and the healthy society, as well as the diseased body and the malfunctioning society” (1987:20), the presentation of such healthy old bodies can be read as an attempt to project a healthy America in the face of demographic fears.
Moreover, this report can be read as an example of the regular reproduction of bodies necessary for the maintenance of the body politic that Scheper-Hughes and Lock identify (1987:25). Arguing that the state or community has an interest in controlling its members, Scheper-Hughes and Lock give examples of groups that regulate their boundaries by “controlling bodies in a time of crisis” (1987:25–26). Individual bodies then come to represent (or not) particular normative ideals of the state. In this light, then, let us return to the images of bodies in the WHCoA report. These active, socially engaged, and healthy bodies are presented in this state document as the normative ideal. With the exception of the man in the wheelchair, there is no room for old individuals who do not fit into these categories. Against the demographic fears of an unproductive and burdensome old population, the productive old citizen is simultaneously displayed and created.
Alzheimer’s disease: citizenship challenged
Yet Alzheimer’s disease presents a challenge to these images, for those with Alzheimer’s are not always identifiable physically and might not be visible in these photographs. This ambiguity could undermine the easy claims to identifying health visually that I made in the previous section.8 Might some of the people pictured have Alzheimer’s disease? How might this illness, invisible but possibly present in these ambiguous photographs, fit in to this document? If those represented are productive citizens, is there a possibility of the non–productive citizen?9 What can we make of those who are excluded from the WHCoA report? These alternatives follow logically from the necessity of defining subjects. Following Agamben (1998), I am interested in considering what constitutes zoe, or forms of life that fall outside political life, or bios (Agamben 1998:1–7). As life that is “included in politics in the form of the exception, that is, as something that is included solely through an exclusion” (Agamben 1998:11), people with Alzheimer’s disease constitute zoe.
This exclusion of those with Alzheimer’s is borne out in the anthropological literature as well as my own experience, cited at the beginning of this paper. Indeed, it was my own observations of Alzheimer’s as a distinct category that originally drew me to this project. Cohen describes a similar background to his own research. He locates the origins of his research into aging in India in his own “witnessing the emergence of the age of Alzheimer’s in North America” (Cohen 1998:6). Citing Karen Lyman’s (1989) linking of the proliferation of popular discursive representations of Alzheimer’s to the “progressive ‘biomedicalization’ of dementia” (Cohen 1998:6), Cohen calls for a deeper understanding of this new age that goes beyond institutions, for “something far deeper, something more pervasive is at work” which “exceeds the sites of its professional management” (1998:6). In other words, the significance of Alzheimer’s disease to contemporary North American society extends beyond the clinical prevalence and media representations of this disease. This consideration of the WHCoA report confirm this analysis.
If the person with Alzheimer’s is the necessary exception to the ideal “older American,” how is this person represented in the WHCoA? The answer to this question is brief, for there is a surprising paucity of discussion of Alzheimer’s disease throughout this text. Besides listing Alzheimer’s organizations which participated in the conference, there are only five distinct references to Alzheimer’s disease or dementia in the report (WHCoA 1996:48, 292, 314, 329, 335). The most significant of these references concerns Resolution #4, entitled “Alzheimer’s research.” In the text of this resolution, we learn that Alzheimer’s currently “affects more than 4 million Americans” (WHCoA 1996:292) and that this number will only grow. We learn that “Alzheimer’s disease will take more of our national wealth than any other illness except cancer and heart disease” (WHCoA 1996:292). We learn that “delaying the onset of Alzheimer’s disease by only 5 years can reduce half its potential victims and save the nation more than $50 billion annually” (WHCoA 1996:292). Finally, we learn that scientific research holds promising possibilities and that funding for research should remain high (WHCoA 1996:292). The remaining references to Alzheimer’s are in separate resolutions that relate to biomedical research (WHCoA 1996:329) or mental health care (WHCoA 1996:314, 335).
Despite this dearth of references to Alzheimer’s disease, we can still draw several points from the little that is presented. Alzheimer’s exists in this document only as an object of research, and therefore remains a disease rather than an illness (Kleinman 1988). As a disease, Alzheimer’s exists here as “the problem from the practitioner’s perspective” (Kleinman 1988:5), which excludes the lived experience of the sick and the “innately human experience of symptoms and suffering” (Kleinman 1988:3). Focusing on the biomedical aspects of Alzheimer’s is useful and necessary for medical treatment, and I certainly do not mean to undercut the value of such research or to deny its ameliorative effects. Rather, I suggest that the health benefits of this research are not all that exist in this construction of Alzheimer’s, for the social and political are still present. Limiting Alzheimer’s to a scientific object of study, then, creates a relationship of power with the disease (and with those who exhibit its symptoms) inasmuch as power and knowledge are bound up together (Foucault 1977). The economic threat posed by Alzheimer’s can be averted by research that will reduce the number of victims. The dangerous potential of Alzheimer’s can be seen in the absence of a resolution devoted to any other disease. While references to other diseases of old age such as heart disease and stroke occur occasionally, they are never problems in and of themselves. Alzheimer’s alone is worthy of particularly policy recommendations.
Fundamental to the existence of Alzheimer’s solely as a disease is the exclusion of those with Alzheimer’s; the absence of Alzheimer’s as an illness is tied to the absence of those with Alzheimer’s (and the constant presence of the normative healthy “older American”) in the WHCoA report. Inasmuch as this report is a product of the biopolitical state and takes as its project the construction of manageable old subjects, people with Alzheimer’s pose a threat to this discursive relation of power. Why is this? In other words, what kind of subjects are those with Alzheimer’s? Are they subjects in the same ways as the normative “older Americans” represented in images throughout the report? To return to the question posed at the beginning of this section, could any of the nameless individuals described above have Alzheimer’s? The few individuals who are pictured completely alone present a small discursive space for the possibility of the person with Alzheimer’s. Based on stereotypes of the illness, these nameless isolated individuals could have Alzheimer’s, whereas this would be impossible to argue for the majority of the images. While the space opened by these images is indeed small, it nevertheless represents a crack in the normative construction of the ideal old person. To fill the text with these representations would be problematic, however, for these people contradict the ideal which is presented throughout the text.
The self and subjectivity in Alzheimer’s disease
In what ways, however, do people with Alzheimer’s contradict the ideal of the ‘older American’? The answer lies in the nature of the self and experiences of subjectivity in Alzheimer’s disease. But what is it about Alzheimer’s that makes the issue of self paramount? More precisely, what is it about the discursive context in which Alzheimer’s exists that makes both Alzheimer’s and selfhood important and worthy of concern? Elizabeth Herskovits undertakes a review of such constructions in order to determine “what is ultimately at stake in representing the ‘self’ in Alzheimer’s” (1995:147). Detailing the “local sociocultural and political–economic dynamics” in which the concern for Alzheimer’s arose—for this is a relatively recent phenomenon—Herskovits describes the interests of researchers in constructing Alzheimer’s as a pathological social problem that requires a society-wide response (1995:150). Certainly the WHCoA is such a response to the problem of Alzheimer’s, as well as of aging more broadly. Herskovits also argues that the current construction of Alzheimer’s “satisf[ies] certain human needs and interests” (1995:150). Despite the potential problems inherent in functional analyses of positing the existence of universal human needs, Herskovits has a point: it is inarguable that people other than those with Alzheimer’s (such as gerontologists, the pharmaceutical industry, and even Herskovits herself) benefit from the contemporary construction of the disease (1995:150–151). Herskovits points to other scholars who claim that pathology allows for the possibility of control, of making sense out of the chaos of the illness (Gubrium 1986, Shelanski 1975, Stafford 1991, and Tornstam 1992 in Herskovits 1995:151–152). These explanations all exactly describe the representation of Alzheimer’s in the 1995 WHCoA, although not entirely, since the scattered images of isolated old people does allow for the possibility of non–medicalized experiences of Alzheimer’s.
More importantly, because Alzheimer’s is stigmatized and constitutes a “social death” (Robertson 1991 in Herskovits 1995:152), there is no room for this experience in official government discourse. For how could the government allow for the possibility that such an alarming number of its citizens are socially dead, rendered useless and dependent? To allow this would threaten the very foundations of the biopolitical state: the management of life. Those with Alzheimer’s “[transgress] core cultural values, such as productivity, autonomy, self–control, and cleanliness” (Herskovits 1995:153). They also transgress the normative linear construction of time, as we will see in the next section. The very humanity of these people is at stake; they exist on the margins of human existence and border on “monstrosities” (Herskovits 1995:152; cf., Biehl 2005).
Ethnographic examples: the Alzheimer’s self and non–linear time
From ethnographic research with those with Alzheimer’s disease, the reasons for this marginality come into focus. The social death of those with Alzheimer’s, as described above, provides a way to conceptualize this marginality, but the nature of time in Alzheimer’s disease is what ethnographic work has highlighted in experiences of Alzheimer’s disease. Three brief ethnographic examples from institutions for the elderly will illustrate this point.
Kontos’s (2006) ethnographic data from a Canadian nursing home shows how those with Alzheimer’s engage in meaningful social relations through their bodily habits. Whether describing Molly, who displays a string of pearls over a feeding bib; Edna, who practices needlepoint despite exclamations that she does not know how to do so; or Jacob, who speaks coherently only in the moment of prayer (Kontos 2006:197–201), Kontos demonstrates that those with Alzheimer’s still experience themselves as persons and actively maintain themselves as such persons because of the “primordial” nature of bodily knowledge and experience, and its importance in creating selfhood (Merleau-Ponty 1962, in Kontos 2006:203–206). Because this coherence of self is not displayed in ways that others are accustomed to recognizing it, it becomes easy to understand how those with Alzheimer’s can be understood in terms of a radical split in selfhood (Cohen 1998). Here, it is not the temporal experience of those with Alzheimer’s that matters, but the willingness of others to read discontinuity of self into aberrant behavior.
Like Kontos, McLean (2006) uses a phenomenological approach to attempt to understand the seemingly incoherent narrative of an elderly woman, Mrs. Fine, who has severe dementia, and possibly Alzheimer’s disease. In the course of McLean’s research, Mrs. Fine shared her life story, which included many tragic events (the early death of a child, her estrangement from her husband, hurtful lies from those close to her). Mrs. Fine repeated parts of this story on several occasions, although the actors in the story and the time in which events occurred varied from telling to telling (McLean 2006:161–165). After discussing these events with staff and Mrs. Fine’s family, McLean found that these people tended not to believe Mrs. Fine (2006:165–166), despite the historical truth of some of the events. Mrs. Fine’s lack of credibility or legitimacy stems from her inconsistency of telling her story, despite the coherence in plot and theme (McLean 2006:168–172). McLean points to the necessity of considering the words and stories of people with dementia on equal footing with those of people without dementia, for automatically to privilege other voices is to rely too heavily on empirical ways of knowing (2006:175–176). This is part of her larger project encouraging phenomenological approaches that privilege subjects’ own construction of coherence (McLean 2006:174), yet it seems that time is crucial to this analysis as well. For it is the inconsistencies in time that largely discredit Mrs. Fine’s stories for others. But if time were not understood as necessarily objective, stable, or linear, then Mrs. Fine’s stories could become rational to others.
The subjective experience of time in Alzheimer’s disease is also evident in Chatterji’s (1998) ethnographic analysis of the institutionalization of an elderly Dutch man, Mr. Rijder, with Alzheimer’s. In describing and analyzing the intersubjective construction of Mr. Rijder’s self through his relations to and interactions with both the institutional caregivers and his family, Chatterji shows (like Kontos 2006) that it is possible to attempt to access the subjectivity of someone with Alzheimer’s, although it may not be through a narrative expressed through language (1998:356). Given the significance in medical anthropology of the illness narrative and the primacy of language to these narratives and subjectivities, accessing experience in the absence of language becomes crucial for those with Alzheimer’s (Chatterji 1998:356).
Drawing on the work of Robert Desjarlais (1994), Chatterji argues that:
For some persons who live precariously on the margins of society, under conditions of extreme deprivation, existence may be reduced to a succession of discrete events that cannot be configured into a temporally coherent narrative that looks back to a past and forward to an anticipated future. [1998:356–357]
If people with Alzheimer’s can be identified as “precariously on the margins of society,” then we can follow Desjarlais in making the connection that their experience would not be lived as narrative; rather, a more disjunctive set of events would be appropriate. Indeed, this is fundamental to the problems in understanding those with Alzheimer’s. Time does not remain subjugated to the hegemonic linear construction required by normative constructions of the healthy old person. Yet we find in the WHCoA an insistence on recuperating the old into a larger teleological and continuous narrative. This construction of a linear narrative becomes impossible, however, for those with Alzheimer’s, as does its consistency (McLean 2006) and its ability to be recognized by others (Kontos 2006). Therefore, their narrative is erased from the text of the WHCoA and denied the possibility of disrupting the temporal controls of the biopolitical state.
It is not only the temporal normativity of the biopolitical state which refuses disruption, however, but also that of the discipline of anthropology. As Caroline Bledsoe argues, despite its drive towards examining cultural constructions, “neither classic nor more contemporary anthropology has questioned the veracity of linear time in the life course” (2002:55–56). Although these are generalizations and Bledsoe notes several exceptions (including Cohen 1998), anthropology remains woefully tied to the normative chronological time which dominates other disciplines such as demography.10 This is a harsh criticism, for it is doubtful that most anthropologists would appreciate the comparison to other scholars who hold rigidly normative views of time.
Yet what is presented in the WHCoA is a particularly striking example of the normativity of chronological time. People become ‘old Americans’ at the age of 65. This chronological normativity is strikingly obvious in the attention paid to the date of January 1, 1996 by two separate statements on the aging baby boomers (1996:209–214). On this date, “the first post–war Baby Boomer celebrated her 50th birthday” (WHCoA 1996:209) and the entire generation entered middle age, soon to reach the age of 65 and become ‘older Americans.’ This linear progression from middle age is not challenged, and is even necessary to the management of ‘older Americans.’ By presenting the current middle-aged cohort as the future ‘older Americans,’ they too become complicit in this biopolitical project. Also evident in the inclusion of perspectives of children, teenagers, and young adults (WHCoA 1996:203–208), this report and conference engage in a teleological project in which all citizens will one day become ‘older Americans’; it is only a matter of (chronological) time.11
It is interesting to consider Bledsoe’s (2002) proposal for escaping this normative construction of time. She calls for an “idea of space that gives way to new forms imbued with a constantly shifting set of values” (Bledsoe 2002:60). These “temporalities, which are not necessarily reducible to fixed points in history,” are neither “necessarily equidistant from one another, though they generally connote an ordering of events relative to each other” (Bledsoe 2002:60). Bledsoe identifies phenomenological approaches which consider bodily experience as a fruitful line of inquiry for this project (2002:60), and indeed, the analyses of Chatterji (1998), Cohen (1998), Kontos (2006), and McLean (2006) offer productive possibilities in these directions.12
This move away from chronological time was put forth by Chatterji, as discussed above. But there is more to Chatterji’s analysis than the construction of time. If we take seriously the claims of the construction of the intersubjective self as described by Chatterji, then the lack of self in the individual with Alzheimer’s also puts our own subjectivity at risk. “The revelatory capacity of the body is linked as much to the recognition of the face of the other as it is to the power of sentience. It is through the face of the other that one recognizes the other’s corporeality and is made accountable for it” (Chatterji 1998:375). Our own subjectivity, then, is bound up with the subjectivity of our significant others, or the others that matter to us (see Strathern 1988 for discussions of ‘partible’ persons formed through exchange relations). This is apparent in the practice of the individuals in Chatterji’s ethnography. Mrs. Rijder, the wife of the person with Alzheimer’s, pays a great deal of attention to monitoring and controlling the materiality of her husband’s condition (Chatterji 1998:362–374). This is manifest in her concern for his dentures, clothing, and furniture, both before and after his death, and could be read as an attempt to fix her own subjectivity in the face of problematic, even impossible, intersubjective relations with her husband. Although these considerations of intersubjectivity and selfhood could be seen to fall outside the realm of institutional juridical power, Chatterji refuses to allow these relations to remain isolated, just as Scheper-Hughes and Lock call for in their analysis of the body politic. This ethnographic example provides an example of what Cohen (1994) identified as lacking in geroanthropology. Chatterji’s approach takes into consideration the particular experiences of the person with Alzheimer’s and his interactions with significant others, the political logic and context in which this experience is organized and lived, and the author’s relation to those being studied. This multiplicity of levels of analysis and types of questions is necessary for any study of aging—or indeed, any ethnography—that hopes to be successful.
Although I have primarily analyzed the subjectification and subjectivity of older bodies, this analysis could be applied to other bodies that are not already defined as somehow old. Indeed, this expansion beyond the ‘old’ is crucial to understanding aging as part of broader life processes (e.g., Cohen 1998, Lamb 2000, Lock 1993, Myerhoff 1979) and old age as a phase in the life course in which broader social processes become apparent (cf., Fortes 1970, Goody 1958). This is necessary in order to avoid subdisciplinary isolation and reification of the old body (Cohen 1994). By highlighting the work of scholars who focus on the particularities of bodily experience in space and time, I have tried to extend the significance of this analysis beyond the study of Alzheimer’s disease, in particular, as well as aging, in general.
Another point that can be extended beyond this analysis address the nature of the self and accordingly, the epistemological grounds of anthropological knowledge. Herskovits concludes that as a society, our fears of and interest in Alzheimer’s are bound up with “what appears to be an underlying urge to address our future ontology” (1995:160), while as theorists “perhaps what is at stake in the debates about the self–in–Alzheimer’s is our very notion of what comprises the self and what constitutes subjective experience” (1995:160). If we take seriously the possibility drawn from Chatterji’s (1998) research that those with Alzheimer’s destabilize the continuity of our own selves as well as their selves, Herskovits’s observations become increasingly important. Denying coherence and legitimacy to those with Alzheimer’s somehow denies coherence and legitimacy to our own selves, whether now or in some imagined future.
As Cohen (1994) points out, the status of the elderly person as a potential future of the anthropologist brings into relief epistemological questions about the nature of anthropological knowledge. Following Cohen in his claim that geroanthropology has traditionally not been practiced by old anthropologists (1994:141), it is pertinent to point out that “old persons remain distinctly the Other” (1994:141). That is certainly true for this researcher, and I am duly suspicious, then, of the claims to knowledge that I can comfortably make.
Yet it is true that older persons are distinct from those younger than them in certain ways, inasmuch as they are experiencing a materiality that those younger than them do not know, have experienced different rites of passage that come with age, and may have lived through different political and economic formations. But this difference of time and experience need not constitute a radically different mode of being in the world. It certainly could, but this difference must not be naturalized. Therefore, anthropological concerns of representation are paramount here. This caution is essentially that of any anthropologist, but studying aging highlights issues of time and the life course in claims to knowledge. Examining constructions and experiences of time is crucial to exploring what is at stake in aging and its anthropological analysis.
1. An earlier version of this paper appeared in Polish as “Starsi Amerykanie” a choroba Alzheimera. Biopolityka, podmiotowoúæ i obywatelstwo. (“Older Americans” and Alzheimer’s Disease: Biopolitics, Subjectivities, and Citizenship.) Ania M. Nowak, trans. 2006. In Trzeci wiek drugiej plci: Starsze kobiety jako podmiot aktywoúci spolecznej i kulturowej.(Third Age of the Second Sex: Elderly Women as Social and Cultural Actors.) Edyta Zierkiewicz and Alina Lysak, eds. Pp. 223–241.Wroclaw, Poland: MarMar Press.
2. Please see footnote 5 for Cohen’s (1994) discussion of the construction of difference between the anthropologist and the old people she studies.
3. Unfortunately, time constraints did not allow for analysis of the 2005 WHCoA or its final report. Please see http://www.whcoa.gov/ for more information.
4. I would like to thank the anonymous reviewer of this paper for this observation.
5. Demographic statistics are also used by anthropologists. Cohen (1994:143) argues that the use of “demographic urgency” in anthropological studies of old age (see Kaufman 1986) serves to create a divide between the anthropologist and her subject. This divide can only be bridged by the classic anthropological project of discovering what “the natives” are really like (Cohen 1994:143) and forms the root of the hermeneutical problem with geroanthropology.
6. The presence of death is quite literally in the margins of this document. Scattered throughout the text, in the margins, are no less than 13 brief obituaries of former government officials or private citizens who were influential in some way in the care of old people.
7. There are several photographs of individuals identified only by their role (such as the photograph in WHCoA 1996:307 labeled “1995 WHCoA Advisory Committee Meeting”). These present a different and interesting category of images, but these are not to what I am referring here.
8. I would like to thank the anonymous reviewer of this paper for this suggestion.
9. Another worthwhile question would be: “What of the non–citizen, productive or not?” While certainly relevant to this paper, considering non–citizens in the literal political sense falls outside the scope of this paper. Yet I hope that by demonstrating the ways in which those with Alzheimer’s are non–citizens, this inquiry will have relevance to situations outside those presented here. Really, the broader question could be: “what are the limits of possibilities for those who exist only in this excluded status?”
10. Bledsoe is here referring to sociocultural anthropology. It would seem that the subfields of linguistic anthropology, biological anthropology, and anthropological archaeology might have different uses and understandings of time, but these inquiries fall outside the realm of this paper.
11. As I have already pointed out, the one certain telos—death—is largely absent, and instead, being an “older American” is presented as the telos.
12. I take Bledsoe’s criticism very seriously for it gets at the heart of the difficulties of studying aging and Alzheimer’s. While as an anthropologist I know that there is cross–cultural variation in constructions of both aging and time, it is still a difficult concept to grasp when approaching the lives of others. Margaret Lock’s concept of “local biology” (Lock 1993, 2002) in conjunction with Arthur and Joan Kleinman’s “local moral world” (Kleinman and Kleinman 1991) provide useful theoretical ways out of this deeply embedded ethnocentric rut. John Traphagan’s ethnographic consideration of senility in Japan (1998), Annette Leibing’s ethnographic consideration of Alzheimer’s in Brazil (2002), and Pia Kontos’s consideration of different theoretical approaches to aging bodies and biologies (1999) provide instructive examples for thinking about “local biologies” and “local moral worlds” in ethnographic practice.
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