Health Identities and Subjectivities:

The Ethnographic Challenge

Abstract

The formation of identity and subjectivity in relation to health is a fundamental issue in social science. This overview distinguishes two different approaches to the workings of power in shaping senses of self and other. Politics of identity scholars focus on social movements and organizations concerned with discrimination, recognition, and social justice. The biopower approach examines discourse and technology as they influence subjectivity and new forms of sociality. Recent work in medical anthropology, especially on chronic problems, illustrates the two approaches and also points to the significance of detailed comparative ethnography for problematizing them. By analyzing the political and economic bases of health, and by embedding health conditions in the other concerns of daily life, comparative ethnography ensures differentiation and nuance. It helps us to grasp the uneven effects of social conditions on the possibilities for the formation of health identities and subjectivities.

The ways that health is invoked in the formation of identity and subjectivity is a fruitful field for anthropologists, whether or not they consider themselves “medical.” That is because they touch on fundamental issues in social science: the workings of power in relation to social differentiation and senses of self and other. In this article, I review some of the theoretical issues at stake here, to underline the contribution of detailed ethnography to these discussions. In the interest of oversight, I will radically simplify by distinguishing two approaches: the focus on politics of identity and the concern with subjectivity and biopower. Both themes are part of a wider intellectual discussion in cultural studies, sociology, political science, history, and philosophy. Anthropologists have found inspiration here, but the commitment to comparative ethnography means that our contributions have problematized both approaches. We are concerned to specify: What particular political, historical, technological, and cultural circumstances facilitate, shape, and constrain the working of health identities? How and when do specific situated concerns move some social actors, but not others, to think and act in terms of health? What resources are at stake?

Identity Politics

The link between health and identity is not a new topic for social scientists. Goffman put it firmly on the agenda with his magnificent essay on stigma from 1963. Health issues—disability and mental illness—provided some of his most striking examples of the management of spoiled identity. Sociologists working with labeling theory in the 1960s and 1970s emphasized the formative effects of diagnostic practices for people who learned how to be different after being so identified by authorities. In anthropology, research on spirit possession and initiation to the role of healer, shaman, or diviner often focused on identity and its transformation. Ethnic or national identity, indeed identification with any kind of imagined community, can be linked to therapeutic systems. Pride in, or allegiance to, Ayurveda or African traditional medicine or homeopathy is a kind of medicinal cultural politics that places a person by expressing loyalty to one system in opposition to another.

Identity is about similarity and difference between selves and others. But as Richard Jenkins points out, it is the verb to identify and not the noun identity that opens the richest analytical perspectives. The verb makes identity a process that happens between people. He quotes Boon to the effect that social identity is a game of playing the vis-à-vis; and he underlines that identities work and are worked (Jenkins 1996:4–5). It is this practicing of identities with an eye to consequences that forms the first part of the opposition I wish to explore.

Identity politics is about the revaluation of difference: the assertion of a difference that had been disvalued, the witnessing of discrimination, and the struggle for recognition, rights and social justice. Sometimes called the politics of difference or of recognition, it is at once personal and collective. As noted in an early article on mental illness and identity politics: “insofar as they seek to effect changes in public policy, [such social movements] consciously endeavor to alter both the self-concepts and societal conceptions of their participants” (Anspach 1979:766).

Identity politics is a child of the 1960s and very much a part of U.S. social history. The philosopher Richard Rorty traces a transformation in U.S. leftist thinking from the pre-1960s Reformist Left to the Cultural Left that marked the 1970s, 80s, and 90s. Where the old Left was concerned with economic injustice, the new one took on prejudice. As Rorty puts it, the new “politics of difference” was about stigma and humiliation, rather than greed and money: sadism not selfishness (Rorty 1998:76–77). He thus sets up a dichotomy between a politics of recognition and a politics of redistribution (Fraser 1998).

From the civil rights movement to Black power, feminism, gay rights, and multi- culturalism, the politics of identity put recognition of difference on the agenda. Recognition was a first and necessary step toward action for change. As Terence Turner argued concerning multiculturalism, identity politics was about “collective social identities engaged in struggles for social equality” (Turner 1993:412). There is always a possibility that politics of identity can fetishize difference and tend toward separation, but it can also make a critical contribution to politics in the sense of discussion and action among a plurality of people.

In the arena of health, the disability movement is perhaps the clearest example of identity politics. The militant campaign for disability rights in many countries was accompanied by an increased sensitivity about identity and respect, as expressed in language, law, and even architecture. In the academy, the field of Disability Studies emerged with a strong focus on recognition, personal experience, and the social and cultural processes of disablement. The interest in identity spread beyond the “classic” motor, sensory, and intellectual handicaps to encompass obesity, chronic illnesses, infertility, old age, and even traumatic experiences like being raped or tortured (see the range of contributions in Ingstad and Whyte 2007).

There is often an overlap between movements making claims for justice from the larger society and support groups for people sharing a common problem. Between the two poles of identity politics, the collective and the personal, different balances are made between common political efforts and individual endeavors to rework a devalued identity. The whole continuum of health rights movements and support groups is better represented in the global north than in the resource-poor settings of the south. But scholars are beginning to examine the emergence of identity politics of health in developing countries, and their research can provide a needed comparative perspective.

One of the best studies from Africa is a historical work on leprosy and identity in twentieth-century Mali (Silla 1998). Silla shows how the establishment of leprosaria by missionaries and later the implementation of vertical treatment programs by WHO facilitated the transition from commonality to community. People with leprosy left their rural homes to move near clinics and remained in town with others like themselves after being cured. Silla shows that a group identity as lepers developed out of an interplay of institutional catalysts, a critical mass of similarly disabled people, and common interests in survival strategies (including begging). In 1991, a formal association of leprosy patients emerged to overshadow earlier informal groupings, such as the one formed by women beggars. The new organization had more educated leaders, and it joined the national disability federation and took up an agenda of disability rights.

I and Herbert Muyinda (2007) trace the mobilization of people with mobility disabilities in two border towns in eastern Uganda. Accused of being smugglers, they counter by asserting their rights as disabled people. Unlike the situations of lepers in Mali described by Silla, or that of mobility-disabled people in Western Tanzania studied by Van den Bergh (1995), there were neither treatment institutions nor training programs that drew disabled people to town. They came seeking economic opportunities they did not have in their villages. People used connections with relatives and friends to make a start in town, and to get enough cash to obtain their most essential capital: a hand-crank tricycle. Physical mobility was necessary for social extension and political mobilization. Getting a life in the particular niche of cross-border trade that they were exploiting brought them together around common interests; they formed an association to support those interests and took advantage of the national requirement that disabled people be represented on district and municipal councils. Although the political organization of people with disabilities is countrywide, some people identify themselves as disabled far more actively than others. In Busia and Malaba, men with motor impairments form the core of organization, whereas women and people with other disabilities are far less active. We draw connections to the political economy of the border region, to the role of donors in supporting rehabilitation projects, and to Uganda's policy on disability.

Both the lepers in Mali and the mobility-disabled people in eastern Uganda came together around common interests in particular local worlds. From there they made contacts with national and even international organizations. They connected with people from outside their immediate localities who passed on new ideas and new social technologies that they could use in their own local situations. Even in European countries, where institutions and organizations have been in place for some time to provide services or advocate for people with disabilities, the importance of grounding fellowship in specific projects and experiences of commonality should not be underestimated, as shown in Priestley's work (1995) on an organization of blind Asians in Leeds.

These examples of identity politics fit well with current paradigms for health and development that emphasize the “rights-based” approach. Whether the theme is sexual and reproductive health, disability, or health care services, people are to be seen as citizens having rights, rather than mere beneficiaries, clients, or customers. They are to make claims and participate in decisions that affect their lives. Their own understandings and actual struggles, not the programs of outside agencies, should be the basis for change (Institute of Development Studies [IDS] 2003). But of course their own understandings include their perceptions of the possibilities and rationalities of programs. Ethnographic approaches to health identity politics often focus on the way people use agencies and discourses to make claims that further their own projects and agendas.

Ethnography does not assume identity politics but questions the conditions for its existence, as exemplified by a study of diabetes in Beijing by Mikkel Bunkenborg (2003). In the liberalizing political economy of China, where multinational drug companies play an important role in providing information about diabetes, patients become consumers and are rather left to their own devices to manage their condition. They feel unjustly treated, and they carry a heavy economic burden in having to finance their own treatment while they also risk losing their jobs. Bunkenborg describes the informal circles of fellow patients who support one another and pass on knowledge. But he doubts whether there is a politics of identity at work here. It is not a case of diabetic identity as a basis for a social organization of equals with common interests making claims for recognition and rights. Rather he sees these networks as part of the politics of the self in which people cultivate moral character and interact in differentiated and more hierarchical networks of particularistic relations. This is not just a legacy of Confucianism, but a function of the difficulty of forming civil society organizations in China, the insecurity of an unregulated market, unequal access to health care and knowledge, and the management of a disease that requires discipline of the self (Bunkenborg 2003:89–91). Bunkenborg's analysis leads on to the second way of approaching the link between health and identity, which is perhaps better phrased as a relation between health and subjectivity.

Biopower

Michel Foucault's influence in problematizing health and power has been enormous, although perhaps more profound for medical sociology than anthropology. His concept of biopower focuses on discourses and practices that work both at the level of the self and at the level of whole populations. In this sense, it is relevant to consider biopower in relation to health and the politics of identity. However, unlike identity politics, biopower approaches are not generally concerned with explicit political action and debates about social justice. Rather they point toward the much more subtle shaping of subjectivity, of assumptions and bodily practice and attentiveness. Knowledge, technologies, and control are the watchwords.

Inspired by his writings and deeply immersed in the significance of new developments in biological science, Paul Rabinow (1996) launched the term biosociality to capture the ways that biological nature, as revealed and controlled by science, becomes the basis for sociality. His examples are the ways that genetic testing and other kinds of medical technology yield social–biological classifications that are practiced in new kinds of organizations.

I will underline … the likely formation of new group and individual identities and practices arising out of these new truths. There already are, for example, neurofibromatosis groups whose members meet to share their experiences, lobby for their disease, educate their children, redo their home environment, and so on. That is what I mean by biosociality. [Rabinow 1996:102]

Whereas an older generation of social scientists was concerned with the relation between health and bioidentities like race, gender, and age, we must now, according to Rabinow, examine the ways that diagnostic technology actually creates social difference and social groupings. Maybe this is beginning to happen even in developing countries. In Uganda, people who have been screened for HIV are encouraged to join post-test clubs. Although Rabinow emphasizes diagnostics, therapeutic technology can also form the basis for biosociality as in the case of support groups for people who have had mastectomies, colostomies, and transplants, or who are on lifelong antiretroviral therapy.

Here too ethnography is the test. Biosociality is not a given, but an empirical question. How does it work in particular circumstances? A beautiful example is Rayna Rapp's monograph on amniocentesis in the United States (1999). Her study differentiates “the subject,” which includes a whole range of people who live in New York, whom she identifies by age, ethnicity, and job.

Biosociality, “the forging of a collective identity under the emergent categories of biomedicine and allied sciences” (Rapp 1999:302) was one possibility for the parents of Down syndrome children. But it was mostly for a minority: mothers from two-parent families, middle-class, white, having resources of time and income. Although Rapp describes with sympathy the communities of difference, the friendship, the sharing of experience that these parents found in support groups, she also conveys critical voices, like that of Patsy DelVecchio, a recovering alcoholic who expresses resentment of class and of what she sees as self-promotion through identifying with difference.

I cannot see myself sitting with a bunch of petty little women, talking about their children like they were some kind of topic of conversation. This is just life … You get a lot of mothers that's behaving just like in AA, like, “Yeah, I'm an alcoholic,”“Yeah, I'm the mother of a Down's child.”… You get these Park Avenue high-society women with charge accounts saying, “I have my daughter at the institute, I have a private tutor for my daughter.”[Rapp 1999:299–300]

Concerning biosociality, Rapp concludes:

Biomedicine provides discourses with hegemonic claims over this social territory, encouraging enrollment in the categories of biosociality. Yet these claims do not go uncontested, nor are these new categories of identity used untransformed. … At stake in the analysis of the traffic between biomedical and familial discourses is an understanding of the inherently uneven seepage of science and its multiple uses and transformations into contemporary social life. [Rapp 1999:302–303]

It is the uneven seepage of science, the multiple uses and transformations that catch the ethnographer's eye, and not any straightforward working out of biopower expressed in bioidentities, subjectivities, and socialities.

The influence of Foucault is further refracted in the notion of biological (or biomedical or therapeutic) citizenship. Two sociologists, Nikolas Rose and Carlos Novas (2005), use “biological citizenship” to call attention to the way that conceptions of citizens are linked to beliefs about biological existence. Like Rabinow, they are interested in the implications of new biomedical technology for forms of biosociality, although they also note that biosocial groupings are far older than recent developments in genomics and biomedicine—and they make the link to earlier forms of activism and identity politics. Biological citizens are “made up” from above (by medical and legal authorities, insurance companies). And they also make themselves. The active biological citizen informs herself, and lives responsibly, adjusting diet and lifestyle so as to maximize health. “The enactment of such responsible behaviors has become routine and expected, built in to public health measures, producing new types of problematic persons—those who refuse to identify themselves with this responsible community of biological citizens” (Rose and Novas 2005:451).

This discussion of biological citizenship is programmatic and decontextualized. Most of the examples come from Internet sites; there are no lifeworlds here and no social differences of the kind Rapp reported. In this formulation, politics concerns an all-pervasive power that shapes perceptions and subjectivity. Citizens are categorized and behave (or not) in conformity with a biologically oriented discourse. In contrast, the ethnographic uses of the concept of citizenship are more focused on the variety of ways in which actors try to make claims and relate to agencies and institutions through health identities.

Adriana Petryna's original concept of biological citizenship was developed to analyze the struggles and strategies of Ukrainians exposed to radiation when the Chernobyl nuclear reactor exploded in 1986 (Petryna 2002). Skillfully she weaves the original Soviet denial of extensive damage together with the acceptance of state obligations to its citizens by the new government of independent Ukraine. She shows how damaged biology became the basis for making citizenship claims in the difficult conditions of a harsh market transition, increasing poverty, and loss of security. Biopower is part of her story, in that access to treatment, pensions, and other welfare benefits was based on medical, scientific, and legal criteria: “… science has become a key resource in the management of risk and in democratic polity building” (Petryna 2002:7).

Citizens have come to rely on available technologies, knowledge of symptoms, and legal procedures to gain political recognition and access to some form of welfare inclusion. Acutely aware of themselves as having lesser prospects for work and health in the new market economy, they inventoried those elements in their lives (measures, numbers, symptoms) that could be connected to a broader state, scientific, and bureaucratic history of error, mismanagement, and risk. The tighter the connections that could be drawn, the greater the probability of securing economic and social entitlements—at least in the short term. [Petryna 2002:15–16]

In a sense Petryna is describing what Rose and Novas call “making up biological citizens.” To “make the Chernobyl tie” and thus gain recognition by the state, people have to identify themselves in terms of certain symptoms. But Petryna is not talking about some general biopower; she specifies in terms of Ukrainian political history and the international humanitarian aid that made a disabled identity a survival strategy. She brings in the Ukrainian (and Soviet) cultural economy showing how those with good blat connections, or those who could exchange favors or money, were able to negotiate “better” diagnoses, higher disability status, and more entitlements. She gives examples of people who chose to neglect their symptoms, to keep working in the contaminated zone where salaries were much higher. Through her descriptions, we see situated actors who get drunk and beat their wives, try to avoid being drafted into the army, fail to play their sick roles convincingly, or succeed brilliantly as members of disability organizations.

Also anthropologists working with responses to AIDS have taken on the concept of biological citizenship to illuminate issues of rights, claims, and social exclusion. Like Petryna, they place health identities in the context of national history and global connections. Biehl (2004), writing about the activist state in Brazil, shows that “biomedical citizenship” includes those who identify themselves as having AIDS and actively struggle for treatment from public services. Those who do not assert their AIDS identity and rights to treatment—people marginalized by poverty, drug use, prostitution, homelessness—are excluded and made invisible. Community-run houses of support provide a chance for some of these “disappeared” people to be included in the “biocommunity” of AIDS patients: “in such houses of support, former noncitizens have an unprecedented opportunity to claim a new identity around their politicized biology” (Biehl 2004:122).

In a similar approach Nguyen analyses access to antiretroviral drugs in Burkina Faso in terms of a kind of biopolitics that he calls “therapeutic citizenship.” Unlike Brazil, most African states have so far been unable to include those identified as having AIDS within a supportive national community. Instead, local mobilization appeals to a global therapeutic order. Therapeutic citizenship is “a form of stateless citizenship whereby claims are made on a global order on the basis of one's biomedical condition” (Nguyen 2005:142). Activism on behalf of a wider community—a kind of identity politics—is one outcome of identification as HIV+ in Burkina Faso. But Nguyen's ethnographic analysis, like Petryna's, reveals a differentiated situation, in which some people form a vanguard of activists, whereas others are discrete about their identity as HIV+.

Toward Comparative Ethnography

At the risk of caricature, I have contrasted two different approaches to the study of health, identity, and politics. Identity politics focuses on social movements and organizations that reject neglect and discrimination and look to gain recognition and change social conditions. Scholars and activists in this tradition tend to assume conscious actors with intentions. Their questions move forward from the present: who is suffering? what is just? what can be done? The biopower approach problematizes the workings of discourse and technology in the shaping of subjectivity and new kinds of social relations. Its actors are not necessarily conscious of the processes affecting them. The questions here look back to explain the present: how is it that we have come to think like this? associate like this? act like this?

Conventionally, such a strategy of rhetorical dichotomizing ends with a synthesis. Nancy Fraser (1998), for example, argues that neither the politics of recognition, nor that of redistribution, can stand alone in the pursuit of social justice. Both are necessary. In the same classic style, I could point out that newer work on biocitizenship combines identity politics with biopower. The Foucauldian interest in the state and the self, the two poles of biopower, is enlarged with a focus on biosocial groups that make claims for inclusion and justice.

Yet I think it is more important to draw another point from this brief overview. There are pitfalls in both approaches. There is a danger that we lose sight of the political and economic bases of health in our concern with identity, recognition, and the formative effects of biomedical and social technology. By concentrating on the emergence of identities based on health categories, we may ignore other fundamental differences at the root of health inequities. Moreover, focusing narrowly on relations among people with the same health condition excludes all the other relations and domains of sociality that actually fill most of their daily lives. In fact, those other relations may strongly influence the ways that health comes to shape their identities and subjectivities. By defining research problems based on identifications like diabetic, Down syndrome, HIV+, we essentialize, fragment, and decontextualize what is really only part of a life. And it is, after all, a life and not an identity that people are usually seeking, as Michael Jackson reminds us (2002:119).

I have tried to show how detailed, comprehensive ethnography avoids these pitfalls and thereby problematizes identity politics and biopower in more interesting ways. By specifying history and political economy, the examples I have adduced allow us to examine the conditions under which identity politics and biopower might come into play. By describing patterns of social interaction, morality, and meaning, they suggest the processes through which assumptions and consciousness about health assume significance. Finally they are richly textured because the researchers have talked to many kinds of people and considered the multiplicity of domains in social life. The differentiated picture they paint shows not only the uneven seepage of science and medicine into social life, but also the uneven effects of different social conditions on the possibilities for the formation of health identities and subjectivities. With such ethnography in hand, we can begin to make comparisons over time and across social settings—still a major task for anthropology, medical and otherwise.