TOWARD AN ANTHROPOLOGY OF DISABILITY IN AN AGE OF GLOBAL INTERCONNECTION

In order to orient the reader to the conceptual location of the idea of invalidnost', this chapter will make two moves. First, I will review the theoretical framework that has been used to approach disability as a concept in Anglophone scholarship, including (feminist/queer) disability studies, medical anthropology, and science and technology studies. Second, I will consider how the Russian concept of invalidnost' is located in historical and cultural contexts that in some ways distinguish it from Euroamerican disability.

This chapter therefore not only prepares the reader to consider the ethnographic material presented in this dissertation, but also makes a contribution to scholarship by examining cross- cultural notions of disability and theorizing how it is that an intercultural study of disability can be undertaken and located conceptually. In articulating this manner of approach to the broader research questions, I am also proposing a theoretical manner in which to conceptualize disability as a contingent category that is enacted and made real through lived performance in tension with structural elements of material environments, media representations, and expert discourses.

There are several reasons why a cross-cultural comparison of disability and invalidnost' offer important inroads for scholarship - both applied and theoretical. First, as I have argued elsewhere (Hartblay 2014), Anglophone critical disability studies scholarship frequently points to conditions of capitalism as a precipitant to the oppression and domination of people with disabilities; however, given the significant presence of ableism (the systematic domination of people with disabilities, including both individualized disability stigma and structural and

institutional barriers to participation of people with disabilities) in non-capitalist contexts, this claim may be unsubstantiated. Certainly, more investigation is needed to understand how ableism functions in socialist, purportedly socialist, and small-scale societies, as well as in the capitalist nation state.

Critical disability studies scholars have in recent years argued for a greater attention to the ways that universalizing frameworks that posit disability rights as human rights and call on nation states to enforce those rights. They argue that the well-intentioned export of disability rights frameworks may inadvertently have the effect of reinforcing the hegemony of the nation state over postcolonial populations and privilege a model of individual rights (Soldatic and Meekosha 2011). For instance, in contemporary indigenous Australian societies, many people understanding disability not as an inherent or natural way of describing people, but as a category of colonizing states. That is, because disablement is a political-bureaucratic concept (with

medical determinants), the concept of disability is interpreted not as a helpful form of

redistribution or entitlement to particular sets of rights, but rather as a way in which a colonizing state counts, surveils, medicalizes and pathologizes indigenous bodies (Meekosha 2011). In this light, cross-cultural studies of disability in global settings requires a careful attention to the ways that disability gets exported to local, non-western contexts. What Western activists, NGO or government workers may perceive as a path to justice - the implementation of federal social service and education programs for people with disabilities, may not be perceived as such by those receiving the services. Moreover, the meaning of disability, in that sense comes to be contested, and its political antecedents and results indicative of global systems of oppression.

In the Russian case, the history of Western European and American intervention in the region, and a longstanding Eurocentrism in Russian culture that prizes a European modernity as

the height of civilization, must be identified as the global context in which a disability rights agenda is introduced. The export of global human rights discourse from Europe and America to Russia, and Russian dominant culture resistance to these interventions, has been well

documented recently in the case of LGBT rights in Russia; disability represents a similar case of minority identity, in that Western activists assume that the implementation of Western activism and agitation will benefit members of that group in Russia. Likewise, they assume that when such efforts fall short, it is because of a "backwardsness" or failure on the part of Russian society to "catch up" with Western disability rights measures (e.g. implementing inclusive education). In this way, global human rights discourse has become a way in which Eurocentrism is enforced and Western hegemony is expressed (Zigon 2013).

That is, a critical ethnographic approach to disability requires asking not only whether capitalism or Socialism is a better environment for inclusion, but recognizing the normative framework or cultural bias of the researcher's perspective. That is, an ethnography of disability in global context ought to examine how both (a) scholarly models and (b) vernacular semantic domains of disability differ, and what pathways of global connection operate between these categories. Even as I present here disability and invalidnost' as paired conceptual realms, counterparts in dictionary definitions, I maintain space for a recognition that ontological worlds may be incommensurable (Ries 2009). This chapter presents two genealogies: one of the definition and concept of disability in the Euroamerican Disability Studies tradition, and one of the colloquial Russian concept of invalidnost'. In the following chapter, I expand on the global context in which ideas move between and operate in relation to both of these realms of meaning- making.

Cross-cultural approaches to disability

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Given that this dissertation and this chapter propose a tactic of describing invalidnost' or disability in a specific geographically and temporally bounded context, with the implicit goal of offering this for comparison with other historical and cultural moments and places, we might ask: What is the utility of studying disability as a cross-cultural phenomenon? What assumptions do we make about the category of disability and about culture when we compare disabilities across culture? What intellectual and theoretical precedents exist for such an endeavor? On the one hand, we might take an extreme culturally relativist approach argue that categories of bodily difference, stigma, and productivity cannot translate across cultures. Or, we might take a

utilitarian policy approach, and argue that, as much as possible, disability ought to be considered as a standardized category across place and time, in order to devise reasonable policy

implications for how states and societies ought to respond to calls for rights and entitlements for people with disabilities.

This dissertation takes a third route, informed by the ways in which critical disability studies has taken cues from feminist and queer theory. Specifically, critical race theorists, feminist anthropologists and subsequently queer theory has argued that bodies are not in themselves inherently deserving of or bound to a particular kind of behavior or treatment. This opens the opportunity for scholars to document the variety and array of gender roles, behaviors, performances, expressions, and sexualities that are normalized within a given cultural context. Feminist anthropologists in the 1970s called for an anthropology of gender that would look at gender roles across cultures specifically with the goal of seeking out egalitarian modes of gender relation (Lewin 2006; Reiter 1975; Rubin 1975; Rosaldo, Lamphere, and Bamberger 1974; Ortner 1996 and 1974). We must do the same with disability. By paying attention to the ways in

which categories of bodily difference related to health, sensory experience, and productivity are enacted across cultures, ethnographers can contribute to a key goal of disability studies -

specifically, documenting the ways in which what counts as "normal" varies across cultural contexts (McRuer 2006; Davis 2006; Garland Thomson 1997), and unpacking how oppression and marginalization - or egalitarianism - plays out in different cultural contexts. That is, a performative and interactional approach to understanding what it is that we call disability is important (Sandahl and Auslander 2005).

Disability as a conceptual category

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At the heart of this inquiry is a question about classification (Bowker and Star 1999). What kind of category is disability? It seems to bleed between different systems of classification: is it medical, legal, social? Immutable and tangible, or relational and shifting? Given these incommensurable kinds of ways of thinking of disability, how do we enact identities and categories?

In order to address this question, it is important to step back and consider how it is that scholars have conceptualized the work of categorization, or classification, as a mode of human thought. Bowker and Star argue in their volume, Sorting Things Out: Classification and Its Consequences that sorting things, matter, people, and ideas into categories is fundamental to human cognition. From the system for placing cups on one shelf and plates on another in my kitchen cabinet, to the periodic table of elements, to the difference between a driver's license, a state ID, and a passport, human thinking is a system of taxonomic classifications. This insight is not new to anthropology: as Bowker and Star note, anthropologists and social scientists - from Weber to Levi-Strauss and onward - have paid a great deal of attention to systems of

conceptualizes the world, breaks things down into categories, helps outsiders to conceptualize a native perspective. That is, a foreign ontology - while as a whole incomprehensible - might be better understood by an outside through the social scientific work of identifying the discrete practices of categorization; attending to taxonomies allows the social scientist to isolate and illustrate different ways of knowing.

Indeed, as a young ethnographer in training, I was introduced to the Spradley method of ethnographic interviewing (Spradley 1972), spending a great deal of time and energy breaking down the taxonomies of thought hidden in the colloquial speech of my "informants." In order to breakdown and then rebuild an insider's perspective on a particular lifeworld or cultural way of knowing, Spradley urges ethnographers to abandon assumptions that we know what words mean, or how objects or ideas are related to one another in the folk logics of a given subculture.

Moreover, this activity of classification is a kind of "work" - that is, a great deal of human activity, energy, and technological know-how goes into creating, systematizing, revising and reinforcing our systems of classification. Bowker and Star argue that the "how" of

classification is actually a moral and ethical issue, because, by enacting any one system of

classification, a society "valorizes some point of view and silences another. This is not inherently a bad thing -- indeed it is inescapable. But it is and ethical choice, and as such it is dangerous -- not bad, but dangerous" (1999:5-6). In the case of disability, and the standards and systems of classifications used to define it, the process of putting people into categories can be particularly dangerous: on the one hand, the structural violence perpetrated against those perceived by others to be disabled makes it dangerous to be perceived as disabled; on the other hand, definitions of disability may not always fit the kinds of bodies and minds that prevent people from caring for themselves, and so there is a danger of not "counting" as disabled in the eyes of the state that

might otherwise provide disability benefits (Estroff et al 1997). But this does not mean that bearers of extraordinary bodies themselves have no control over disability as an identity.

As Ian Hacking argues in his essay titled, cleverly, "Making Up People" social identities are at once "made up" through the institution of bureaucratic categories, and then made real and made meaningful through people's willingness (or reluctance) to enact such categories (1984). That is, drawing on Foucault's discussion of the constitution of subjects, Hacking observes that categories are simultaneously enacted and prescribed, always social. This helps us to understand a core anthropological concern about identity, specifically, how to reckon the problem of

structure and agency in the formation of disabled identity. That is, social structures - including categories of identity - are created, maintained, and transformed through the habits and enacted or performed actions of agentive subjects (Bourdieu 2008; 1984). In this way, disability - as a medico-legal category - becomes a meaningful social category because people use it in social practice (Edwards and Imrie 2003). The distinctions that expert cultures make about what kinds of people exist in the world may or may not have cache for use in colloquial social worlds; moreover, the usefulness and uses of a category like disability may be very different for different social actors (Holland et al 2008).10

My own conceptual understanding of the variable meanings and definitions of disability at work simultaneously were shaped by my experiences as a young paralegal working at the Legal Aid Society in Queens, New York. Plopped down in an office with access to the (then

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10 _{This paragraph reflects several years of conversation and readings on this subject with Bill Lachicotte, who} always pushed me to consider the question of disability identity in relation to structure and agency. Dr. Lachicotte died in 2014, never having published a work on this specific topic. Based on our discussions, however, I think the chapter in the Identity and Agency in Cultural Worlds volume that describes the case of Roger, mental health diagnoses, and identity, is fairly representative of Dr. Lachicotte's much more extensive theorizing of this question (Holland et al 1998:192-213).

newly) online editions of the DSM-IV and the manual of regulations of the Social Security Administration, I was tasked with determining whether or not potential clients might make a case for qualifying for legal status as "disabled" according to the terms of the SSA. Most of my clients had already been rejected twice via a remote application system, and now were seeking legal counsel to appeal these decisions in front of a judge (or, in the parlance of the field, an ALJ - administrative law judge). I was surprised to find that in the world of legal disability status, the definition of disability - bureaucratic, medico-legal system - depended on whether a given person (an individual, regardless of family status) met the standards of the legal code, which was

intended to determine whether or not that person might by physically and mentally capable of holding down a paid job (any paid job!). This concept of disability - related to productivity and the responsibilities of a welfare state to its citizens - was greatly at odds with the symbolic concepts of stigma and normal or abnormal embodiments that I had read about in my

undergraduate introduction to disability studies course. Yet, I felt, both kinds of disability were at work in the marginalization of the clients who came to us at Legal Aid.

How could this be? Two utterly different manners of understanding disability could co- exist side by side in a single complex society. And, as a person who was thinking deeply about social justice and disability, I found that both models applied.

Annemarie Mol, in her 2002 book The Body Multiple argues that very often words have incommensurable meanings not only across folkworlds, but within functioning social systems. This is not, she submits, an epistemological question - e.g. competing ideas about the nature of reality, and about which system of classification or way of knowing best represents or interprets an actually existing truth (vii). Rather, this is an issue of a "complicated crowd" of multiple

ontologies (6), or ways of enacting, recognizing, or relating to a particular classification about human bodies - in the case of Mol's research, atherosclerosis of the legs (a vascular condition).

I bring this up to gesture to the ways that there may be multiple definitions of disability circulating and being enacted within a single system. Another mode of understanding this question of manifold but intertwined ontological worlds in contemporary ethnographic theory is Anna Tsing's concept of friction, the productive mismatch that occurs when chains of commerce or meaning interact across difference. Globalized communities make use of multiple kinds of knowing; "universals" like human rights - or, the concepts of "disability" and "access" - travel across, through, and with different cultural realms, gathering distinct meanings and values in each.

Disability studies and medical anthropology take a similar tack in investigating both the information infrastructures of the welfare state (what is a definition of disability for? For whom is it working?), and the built environment of a given place (For whom does the city inhibit transportation? Who can move around easily?). That is, frequently, these questions of built-in- bias in both information and spatial systems are justice issues.

Enacting Disability

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Ethnographers have long been concerned with sussing out folk categories as a manner of coming to understand a point of view. At the same time, information scientists, bureaucrats, and specialists in various fields are continuously concerned with the creation of expert categories.

On the one hand, disability is a medico-legal concept, defined by experts, diagnosed or granted through state systems (Stone 1984). It is also a folk category, an "I know it when I see it" form of bodily or sensory difference (Linton 1998; Garland-Thomson 1997). How, then, ought we understand the ongoing negotiation between disability as a category defined by experts

(lawyers, doctors, states), and by people in the thrownness of daily life? On the one hand, formal classification systems - knowable and known only to specialist or laypersons with extraordinary patience - are designed to reflect and interface with folk concepts, yet are elaborated more formally and are therefore more delineated.

Medical anthropologists have asked related questions about diagnostic systems of classification. When comparing cross-cultural systems of medicine and health, or ways of understanding the human body, medical anthropologists have observed that not only are the nosologies (or types of disease) different, but the bodily systems, parts, and symptoms that medical practitioners identify are also at odds (Good 2006). The question then becomes not so much whether or not there is one "correct" nosology (frequently assumed in mainstream US discourse to be Western or allopathic medicine, the only option that qualifies as "science"), but rather, how local systems of classifying the body and disease or difference play out in daily life. That is, a medical anthropological perspective insists that Chinese medicine (Farquhar 1994), Indian definitions of Alzheimer's disease (Cohen 1998), or Zande causes of disease (Evans- Pritchard 1976) are not invalidated by the recognition that they are cultural contingent; rather, they are real in that they are enacted as truth in ways that make them matter for people's lives.

Moreover, not only are localized systems of classification real, and enacted, they are naturalized and taken for granted. This becomes obvious in the ethnographic record, for example, in ethnographer's descriptions of the difficulty of finding a suitable informant: not every

practitioner of a cultural system is able or willing to achieve the intellectual distance to describe their modes of action to an outsider (e.g., Shostak 2000 (1981)). The problem of unpacking local categories and domains of meaning is precisely the task of ethnographic research and analysis