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6 Health-related deservingness Sarah S. Willen and Jennifer Cook

INTRODUCTION

In 2003, 17-year-old Jesica Santillan underwent a heart and lung trans- plant at Duke University Medical Center in Durham, North Carolina. Just after the surgery, routine post-operative blood tests revealed a terrible mistake; Santillan had received organs of an incompatible blood type. In a frantic effort to correct the error, her doctors procured another set of organs and performed a second transplant. Yet the damage was too great for her already weakened system, and she died several days later.

The story of the "bungled transplant" (Wailoo et al, 2006) made local and national headlines. How could such a mistake oceur in one of the nation's premier medical institutions, the American public wanted to know. Who was to blame? As the media dug deeper into the details of the case, the tone of the conversation shifted, and spectators began asking a decidedly more contentious question: did Santillan even deserve a trans- plant in the first place?

From a clinical standpoint, physicians establish eligibility for organ transplantation using sophisticated biomedical algorithms. In Santillan's case, post-mortem eligibility debates revolved not around biology, but around biography-especially the fact that Santillan and her mother had entered the United States without legal authorization when she was 13. Commentators labeled Santillan an "illegal immigrant" and debated whether or not she deserved the medical care she had received. Some contended that only citizens should have access to "citizen organs" (Chavez 2006: 292) and declared Santillan and other "illegals" inherently undeserving. Others pointed to Santillan's youthful innocence and Iife- threatening illness as evidence of her deservingncss, The tragedy of Jesica Santillan's death and ensuing controversy highlight an important but under-examined issue: the impact of vernacular deservingness assessments on broader debates about migration and health.

Conceptions of "health-related dcservingness' (Willen 2012a, 2012b) always emerge in specific social, historical, and ideological contexts. Debates about health-related deservingncss involve divergent and often competing moral stances about whose health-i-whose bodies, lives, and life chances-matters. The focus of such debates can range from questions

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96 Handbook of migration and health

of individual access to a particular form of clinical treatment, as in the Santillan case, to questions of system-wide access for entire populations. The absence of public debate itself speaks volumes-i-for instance, when policymakers ignore occupational health risks that predominantly affect migrants (like prolonged pesticide exposure among agricultural workers), or developmental health risks common among migrants' children (like long-term "warehousing" in unregulated daycare settings that endanger health and human development).

In this chapter, we propose that any meaningful effort to influence the tone, tenor, or outcome of debates about migrants' health will depend on the ability to identify, uncover, and analyze the often-hidden values and presumptions they entail. To this end, we aim to operationalize the concept of health-related deservingness and illuminate its significance in debates about migration I and health in diverse settings and at multiple levels of analysis. We begin by considering how the notion of deserving- ness has been conceptualized in recent social science scholarship, where migrants comprise but one among many groups whose descrvingness regularly comes into question. We then offer a framework for analyz- ing deservingness debates, with a particular focus on debates involving migrants' health. The framework involves three core clements: the stake- holders involved, the contexts in which such debates take place, and the evaluative criteria employed. In the final section, we put this framework into action by analyzing health-related deservingness debates in three migration settings: one in North America, one in Western Europe, and a third in the Middle East.

Overall, we aim to provide strong scaffolding for broad-ranging, interdisciplinary inquiry into both how health-related deservingness is reckoned and how local deservingness assessments can affect the health of individuals and the communities in which they live.

CONCEPTUALIZING DESERVINGNESS

In an important sense, deservingncss can be understood as the flip-side of rights. Whereas rights claims arc expressed in a formal juridical discourse that presumes fundamental equality before the law, dcscrvingness claims are articulated in a vernacular moral register that is situationally specific and context-dependent. Put differently, deservingness debates often have less to do with empirical evidence than with competing everyday responses to normative questions. These vernacular responses generally mix subjec- tive attitudes and presumptions with taken-far-granted truths regarded as collective "common sense." For instance, a debate might revolve around

Health-related deservingness 97

the question of "Who should have access to this particular healthcare service?" or "Should this person receive financial support in accessing this service?" In many instances, the vernacular reasoning deployed in such debates is but loosely tethered to empirical realities. Often it carries a pow- erful emotional charge.

How do rights claims and deservingness assessments differ? Both are social constructions (Schneider and Ingram 2005), but they diverge in key respects. First, unlike rights discourses, which presume blindness to indi- vidual particularities, deservingness assessments typically are relational. One assesses others' relative deservingness on the basis of two key factors: an implicit sense of one's own deservingness, and a sense of (actual or presumed) social connection to those whose deservingness is in question.

Second, deservingness assessments are often conditional on presumed or actual features of those whose deservingness is in question-intrinsic or extrinsic, mutable or immutable-regardless of their salience. In short, rights are presumed to have universal significance, even when they are not universally enjoyed in practice, whereas deservingness is always reckoned in conditional terms.

Third, conceptions of deservingness never emerge in a vacuum. Rather, they are always grounded in a particular social and political context. Fourth, deservingness assessments are syncretic; they are simultaneously grounded in multiple sources of moral insight and experience. For instance, they may reflect an amalgamation of professional expertise, "common sense," and personal beliefs and experiences. Fifth they are infused with affect, or emotion. Finally, they are mutable; they are liable to shift and change in response to new knowledge and evolving circumstances.

In short, vernacular ways of reckoning deservingness in general, and health-related deservingness in particular, involve complex forms of moral reasoning. The impact of such assessments is neither arcane nor trivial. At the local and national levels, questions of "who deserves what" arc pivotal, if implicit, throughout the political process. They shape the discourse and practice of legislators and policyrnakcrs (Chock 1991; Guetzkow 2010; Heyman 1998), healthcare institutions (Horton 2004; Wailoo et al. 2006), clinicians (Holmes 2012; Marrow 201 I; Vanthuyne et al. 2013; Huschke 2014), the media (Yeo 2002,2008), and ordinary citizens (Gilens 1999; Katz 1989; Will 1993). At an international level, such questions challenge us to confront the profound health implications of contemporary patterns of global inequality.

98 Handbook ofmigration and health

DESERVINGNESS AND WELFARE

The most robust body ofresearch on deservingness to date takes welfare as its focus. Some social scientists have sought to operationalize deservingness in terms of measurable variables or normative criteria (Appelbaum 2001; Appelbaum et al. 2003; de Swaan 1988; Feather 1999; van Oorschot 2000, 2006). Others have explored the impact of recipient characteristics like racial or ethnic background (Gilens 1999; Guetzkow 2010; Horton 2004; Morgen and Maskovsky 2003; Yoo 2008); the social positioning, demo- graphic characteristics, or emotional state of deservingness "evaluators" (Olsen et al. 2003; Verkuyten 2004); level of responsibility for, or degree of control over, the circumstances producing a need for support (Appelbaum 200 I; Appelbaum et al. 2003; de Swaan 1988; van Oorschot 2000; Will 1993; Scott 2008); and real or presumed associations with criminal- ity (Morgen and Maskovsky 2003; Olsen et al. 2003) on deservingness assessments. Other scholars have examined the impact of context, includ- ing economic factors such as unemployment levels (Blekesaune and Quadagno 2003) as well as national and personal ideological frameworks (van Oorschot 2000). Additional avenues of inquiry include the impact of neoliberal influences on welfare and healthcare policy and practice (Bambra and Smith 2010; Guetzkow 2010; Horton 2004; Rylko-Bauer and Farmer 2002) and the impact of the media on public perception (Gollust et al. 2010). Still other influential studies examine how construc- tions of "undeservingness" ignore structural inequalities and reproduce negative, often racialized stereotypes (Gilens 1999; Katz 1989; Yoo 2008). In general, deservingness assessments seem to vary based on perceptions of social proximity between the subjects of debate and those rendering their evaluations (Grove and Zwi 2006; Newton 2005).

HEAL TH-RELATEO OESER VINGNESS

In contrast to this robust welfare literature, relatively little is known about how deservingness is reckoned in the health domain (cf. Gollust and Lynch. 2010; Gollust et al. 2010; Lynch and Gollust 2010; Scott 2(08). This is a complex matter of great significance, especially in an era of neo- liberal pressures toward healthcare privatization and cornmoditization, soaring healthcare costs, growing health disparities both within countries and between rich and poor regions, and massive waves of unregulated migration over land and sea. In countries with historically strong commit- ments to universal healthcare and social service protections. existing rights and entitlements arc increasingly imperiled (Larchanche 2012).

Health-related dcscrvingness 99

Important research questions abound: how do divergent stakeholders-- the privileged and the disadvantaged, policymakers and voters, clinicians and patients-reckon health-related deservingness? What criteria influ- ence deservingness assessments, and what role does ideology play? Who is responsible for providing healthcare, and how should costs be covered? How do moral questions of deservingness intersect with juridical questions of rights? How do they relate to questions of "fairness" (Daniels 2008; Lynch and Gollust 20lO)? Are inclusive deservingness assessments purely aspirational, or arc they grounded in precedent, policy, or law?

In pursuing these questions, it is important to remember that health involves far more than just the presence or absence of disease or injury- and, moreover, more than just access to curative care. Equally important, if not more so, are the social determinants of good health: the upstream factors and structural conditions that predispose certain individuals and communities to be healthy in the first place (WHO Commission on Social Determinants of Health 2008). For example, given the "structural vulner- ability" (Quesada et al. 2011) many migrants endure, their access to social determinants may be as limited as their access to curative care (Castaneda et al. 2015). Furthermore, structural vulnerability renders many migrants less capable of addressing their health needs than their citizen counter- parts. Failure to recognize these interlocking forms of disadvantage can perpetuate the tacit politics of blame that lead many stakeholders to deem migrants undeserving.

Not surprisingly, migrant health has become a central theme in the emerging literature on health-related deservingness. Scholars have asked, for instance: how do local and national policies, especially in the domains of immigration and health, affect local conceptions of deservingness (Marrow 2011; Marrow and Joseph 2015; Haas 2012; Oliverio-Lauderdale 2014)? How do healthcare professionals' often unspoken moral assump- tions about their migrant patients influence clinical interactions (Holmes 2012; Larchanche 2012; Marrow 2011; Vanthuyne et al. 2013)? How do migrant health advocates deploy notions of human rights, humanitarian- ism, and other "idioms of social justice mobilization" (Willen 2011) in claiming migrants' deservingness, and with what effect (Gottlieb et al. 2012; Tiedje and Plevak 2014)? How is migrants' deservingness framed, and contested, in scholarly public health literature (Viladrich 2(12)? And what about migrants' perspectives? Do different migrant groups regard themselves as deserving of access to healthcare, or to the social determi- nants of good health? How are they affected by others' negative assess- ments (Chavez 2012; Larchanche 20 12)? These are all crucial questions that demand further inquiry.

100 Handbook of migration and health

HEALTH-RELATED DESERVINGNESS: A FRAMEWORK FOR ANALYSIS

Deservingness debates involve conversations, either in public or behind closed doors, in which divergent stakeholders express or enact competing views about whether a particular person or social group deserves a certain kind of attention, investment, or care. Although professional consid- erations and empirical evidence may playa role, such debates frequently hinge on vernacular assumptions that rely less on empirical evidence than "common-sense" knowledge and subjective moral commitments. Despite the pivotal role such assumptions play and their tangible effects, they tend to remain unspoken and implicit.

Elsewhere we have proposed that these vernacular forms of moral reasoning urgently require investigation-from multiple stakeholder and disciplinary perspectives, in different contexts and professional settings, and using a range of research methods (Willen 2012a). We develop this argument below, Our project is framed not by normative philosophical questions-for instance, about health and distributive justice-but rather by empirical social scientific questions: how are moral assessments and ethical decisions made in everyday social contexts'! How do they find expression in particular forms of discourse and social practice? What sort of consequences do they effect?

Below we offer a model for investigating how different forms ofvernac- ular moral reasoning inform local conversations about the kinds of health- related attention, investment, and care migrants do or do not deserve, and on what grounds. To parse the assumptions implicated in such debates, three key considerations demand attention: the range of relevant stake- holders, the multiple layers of context in which debates unfold, and the evaluative criteria stakeholders employ.

STAKEHOLDERS

The array of stakeholders engaged in local dcscrvingness debates varies depending on the migrant group involved, the health resource in question, the domain in which a point of tension or contention arises, and the per- sonal stakes for individual stakeholders. These may include policyniakers (elected and appointed), politicians, the media (journalists, pundits, ctc.), advocacy groups, and members of the broader public in their capacities as citizens, voters. and media consumers. In the health domain, other key stakeholders include not just liealthcare providers (physicians, nurses, allied health professionals, ctc.), but also public health professionals, clinical

Health-related deservingness 101

office staff, insurance administrators, and other "street level bureaucrats" (Lipsky 1980) who serve important gatekeeping functions. Ethicists, including bioethicists and public health ethicists, may be stakeholders as well. Migrants are, of course, key stakeholders in all such debates-s-and the fact that their voices so often are muted demands careful scrutiny.

Although professional considerations influence many stakeholders' views, subjective commitments playa crucial role as well. Politicians, for instance, are elected to represent their constituents, but their own moral values-s-and concern for their political futures-i-also playa role. Public health workers hold core professional commitments (e.g., to make wise use of public resources, to follow scientific best practices), but also face political considerations and personal interests, some moral and some tactical (e.g., to protect one's professional credibility-t-or job security). In healthcare settings, administrative staff must juggle professional expec- tations, institutional mandates, and personal views. For example, a hospital's chief financial officer may insist that the billing office require up-front payment from undocumented patients as a way to offset daily operating costs. Administrators processing health insurance applications may thus take it upon themselves to scrutinize the paperwork of patients they suspect to be undocumented.

Clinicians, like administrators, also are beholden to professional, per- sonal, and political commitments, but they are bound by ethical codes that impose additional obligations as well (e.g., the Hippocratic Oath). Advocates, activists, and private citizens are also important stakeholders in deservingness debates. They may be more open and explicit about their political and moral commitments than those acting in a professional role.

To date, scholarship on deservingness has tended to focus primarily on relatively advantaged stakeholders-s-thosc with power, influence or, at the very least, public voice. This, we contend, is insufficient. Instead, future research will need to investigate how deservingncss is reckoned both in relation to and, furthermore, ./i"OI1l the perspectives ()f those most directly affected: individuals and groups commonly represented as undeserving. Research on migrants' perspectives may reveal appreciable differences between their own ethical calculus and modes of moral reasoning, on one hand, and those of other, non-migrant stakeholders, on the other. Moreover, their views of their own and others' relative deservingness are likely to influence their care-seeking behavior as well as their overall health and wellbeing (see, for example, Larchanchc 2012).

102 Handbook a/migration and health

CONTEXT Context is another key element in deservingness debates. Four contex- tual domains are especially significant when migrants' health-related deservingness is at stake: history, law, politics, and economics. Below we highlight a few considerations that arise in each, recognizing that these domains themselves overlap and entwine.

From an historical perspective, one might ask: how have past experiences-either negative (e.g., drought, famine, political turmoil, war) or positive (c.g., France's legacy as home of the Droits de l'honunev-: influenced current views of migrants and migration? Does a particular locale have its own history as a "receiving" community, a "sending" community-or perhaps both at different times? Has it historically been welcoming or restrictive toward migrants? How do views of current migrant populations compare with attitudes toward earlier arrivals, and why is this so?

The legal realm is extraordinarily complex in its own right. At the inter- national level, to what relevant international treaties and conventions is a given country signatory, and how do those international commitments influence policymaking, advocacy efforts, and public opinion? At the national level, who is and is not permitted either to enter the country or to immigrate, and under what conditions? How does national migration law influence public opinion regarding newcomers' opportunities, or lack of opportunities, for membership and social inclusion?

The impact of political and economic context on local deservingness debates cannot be underestimated. In the political realm, to what degree is migration a local concern, and in what respects? What role do political ideologies and other value systems (e.g., religion) play in framing local debate? How do such commitments inform the views of influential politi- cal parties? Vocal minorities? The courts? Advocacy and activist groups? Do migrants themselves play an active role in local political conversation?

In economic terms, how is the local economy performing, and what economic role do migrants play? Are they regarded as a boon or a threat to the local economy? As a valued source of labor, or unwelcome competi- tors for citizen-workers? The economic health of the local public health and clinical care systems also demands consideration. What health ser- vices can migrants access, and who foots the bill? Are these systems over- burdened, or perceived to be, and if so, how are migrants' health needs conceptualized and discussed?

Health-related deservingness 103

EVALUATIVE CRITERIA

Finally, what evaluative criteria inform local debates about migrants' health-related deservingness? In reckoning migrants' relative deserving- ness, stakeholders often rely on presumptions about migrants' lives and life circumstances that draw on a mixture of collective "common sense," personal attitudes, and politicized forms of emotion. The connections between such presumptions and empirical realities may be tenuous at best. Below we highlight five areas of presumption that figure frequently in local debates about who migrants are and what they do, or do not, deserve: migration motive, legal status, moral character, vulnerability, and social proximity to members of the broader society. Although these char- acteristics figure in general assessments of migrants' deservingness, they are especially salient in reckoning their deservingness of health-related attention, investment, or care.

Migration Motives

Migrants' presumed motives feature prominently in local deservingness debates. An especially bright line is assumed to distinguish "economic migrants" (who ostensibly left their country primarily to pursue economic opportunity) from "forced migrants" (presumed to have fled violent con- flict, political persecution, or natural disaster). Although this distinction is typically presented as clear-cut and self-evident, realities are consider- ably more complex (see, for example, Yarris and Castaneda, 2015). For instance, asylum-seekers who have faced violence or oppression but fail to translate their experiences into bureaucratically legible categories will likely find their claims denied. Other migrants leave home fleeing poverty, including impoverishment resulting from climate change, only to find that their migration circumstances are not deemed worthy of recognition or status in their new countries of residence.

People identified as either "economic" or "forced" migrants tend to be viewed and treated in very different ways. "Forced" migrants gener- ally are represented as unfortunate, faultless victims of circumstance who deserve society's attention and material support. This logic is often invoked to mobilize humanitarian and human rights commitments at the national and international levels. "Economic" migrants, in contrast, are often assumed to have chosen freely to migrate and, on these grounds, are deemed responsible for their own fates.

This pattern of moral valuation can vary; for instance, when national policies themselves influence how particular groups' deservingness is reckoned. Policies that prohibit asylum-seekers from working while their

104 Handbook of migration and health

petitions arc pending, for example, force them to rely on interim govern- ment support. As a result, migrants who would otherwise be regarded as faultless and hence deserving victims may be reimagined as a burden to society (Sales 2002; Watters 2007).

Legal Status

Presumptions about migrants' legal status also figure centrally in local deservingness debates. Although the very notion of legal status would seem to hinge on a straightforward distinction, such matters often are far from clear-cut. Deservingness debates rarely account for this complex fluidity.

There is, of course, nothing natural or self-evident about legal statuses; they arc human creations designed to meet political demands. They are also varied, amenable to change, and differentially enforced. A wide range of possible statuses exists both across migration settings and even within a single country. For instance, some residence visas permit study but forbid work, and some time-delimited work permits forbid permanent residence or family reunification. Migrants seeking asylum or refugee status may hold a temporary status valid only while their petitions are pending. And in countries that grant citizenship on the basis of jus soli (birthright citizenship), statuses may vary within a single household or family. Often, violating the terms of one's authorization can automatically trigger a loss of legal status and consequent slip into "illegality."

Yet legal status is more than just a juridical category. It is also morally charged, and different forms of status are imbued with differ- ent moral valences. Unauthorized border-crossing, for instance, may be seen as evidence of immorality-c-or, worse still, of criminality. In either case, presumptions about legal status powerfully influence stakeholder assessments.

Moral Character

Debates about health-related deservingness hinge on impressionistic judg- ments about multiple aspects of migrants' moral character. For instance, stakeholders may make presumptions about a migrant's or migrant com- m un it y' s econotn ic product ivity, personal responsibi lity, fulfillment offamily obligations, and associations with criminality. Are migrants presumed to contribute to the economy, or to society, through their labor, whether skilled or unskilled? To pay taxes'? To depend on welfare, social support, or government programs? Are they seen as willing to integrate into the broader society? On all of these counts, vernacular presumptions influence

Health-related deservinguess 105

deservingness debates, even when they are contradicted by empirical evidence (Chauvin et al, 2013; Chauvin and Garces-Mascarenas 2014).

The same holds true for family status. How are migrants' family con- figurations imagined in comparison to idealized notions of a "normal" family? Are parents viewed as more morally upstanding, and hence more deserving, than single adults? Mothers more deserving than fathers'? Parents who live with their children more deserving than those who have entrusted their children to the care of extended family members'?

The element of criminality is a complicated one, especially given the recent convergence of immigration enforcement efforts and crimi- nal justice in what has been described as "crimrnigration law" (Stumpf 2006). When migrants with precarious legal status engage in informal or illicit activities as a survival strategy (e.g., working or selling goods without a permit, using other people's identification documents, etc.), their actions may be interpreted as signs of immorality and hence unde- servingness. Associations between migrants and criminality, even when spurious, often are bandied about with the explicit goal of inflaming xenophobic sentiment.

Vulnerability

Presumptions of vulnerability also figure prominently in deservingness debates. Migrants considered especially vulnerable may be more likely to draw sympathy and, as a result, may be regarded as more deserving than those viewed as less vulnerable.

Various criteria are used to gauge migrants' vulnerability including gender, sexual orientation, or sexual identity; physical or mental disability; past experiences of victimization (i.e., status as a survivor of violent crime, domestic violence, or sex trafficking); life stage; and health status. Certain individuals-for instance, women, children, the elderly, the severely ill, people with disabilities, and individuals with non-conforming gender or sexual identities-may be regarded as more vulnerable than other migrants and, on that basis, more deserving. Depending on local context and relevant stakeholders' views, however, certain migrants' claims of vulnerability may be deemed suspect-s-for instance, because they fail to conform to social norms, arc perceived as attempts to "cheat the system," or bear some form of social stigma. Migrants living with HIV/AIDS, for example, may not be seen as deserving despite the severity of their disease due to irrational fears of disease transmission. Alternatively, stakehold- ers may question the morality of those afflicted by HIV/AIDS because of stereotypical associations, for instance with homosexuality or promiscu- ity. The example of HIV reveals how evaluations of migrant morality and

106 Handbook of migration and health

discussions of vulnerability can intersect in ways that affect deservingness assessments more broadly.

The relative visibility of one's source of vulnerability or affliction can also playa role in how deservingness is assessed. Sometimes a visible ailment (e.g., a missing limb from a landmine accident) is more likely to garner a sympathetic evaluation than a condition that is less visible (e.g., mental illness).

Social Proximity

Perceived social proximity between migrant populations and citizens is another key criterion in local deservingness debates. Proximity may be reckoned in terms of ostensibly intrinsic features (e.g., race/ethnicity, lan- guage, or religion) or extrinsic features (e.g., willingness to learn the local language, follow local gender norms, or otherwise endeavor to integrate into the broader society). Presumptions of social proximity generally lead migrants regarded as more "like us" to be deemed more deserving than others. On the other hand, in some contexts, stakeholders may invoke societal values like diversity or multiculturalism in an attempt to advocate for inclusiveness.

Assessments of social proximity are deeply inf1uenced by local context. In relatively homogenous societies, for instance, racial, ethnic, religious, or cultural difference may be regarded as a threat to the collective. In countries with a long history of immigration, new migrants may be dis- cursively aligned with older migrant groups with whom they share, or are presumed to share, key features. Aspects of local ideological, political, and historical context can inf1uence perceptions of social proximity and heighten concern about particular groups (e.g., about migrants of color in majority white societies, or about Muslim migrants in societies that are predominantly Christian).

HEALTH-RELATED DESERVINGNESS: THREE DEBATES

How do these forms of vernacular moral reasoning figure in localized debates about migrants' health-related dcservingncss? To address this question, we turn now to three cases: one from North America, one from Western Europe, and one from the Middle East. In discussing each case, we engage all three elements of the framework introduced above (stakeholders, context, and evaluative criteria) while foregrounding one of the three. Each case provides a vivid illustration of how vernacular

Health-related descrvingness 107

conceptions of health-related deservingness can be implicated 111 the domains of migrant health research, policy, or practice.

Organs for the Undocumented? A "Bungled Transplant" in the United States

The tragic case of Jesica Santillan, the 17-year-old immigrant from Mexico who died in the United States in 2003 after a "bungled" transplant, spurred high-profile debate among an impassioned array of stakeholders. Should she have received a heart and lung transplant in the first place? After the botched transplant that led those organs to fail, should she have received a second? Pundits and the general public seized on Santillan's story as an opportunity to debate a broader set of questions. Should undocumented immigrants receive healthcare in the United States at all? If so, what kind of care ought they to receive, under what conditions, and with what limitations, if any? Finally, who should pay?

In Santillan's case, as in any deservingness debate, context matters. Despite the country's "melting pot" origin myth, the history of restrictive immigration policy and anti-immigrant sentiment in the US runs deep (Ngai 2004). Especially in times of economic vulnerability, US public opinion has tended to portray migrants and immigrants, and unauthor- ized migrants in particular, as a drain on resources and a threat to national sovereignty (Chavez 2012; Portes et al. 2012). When Santillan and her family moved to the largely agricultural southern state of North Carolina in 2003, a new wave of Latino migrants seeking agricultural work had just begun to arrive (Kochhar et al. 2005). Although US citizens generally have been loath to take up jobs in the agricultural sector, fears of economic competition and cultural and demographic change have at times fueled xenophobic sentiment, especially in places like North Carolina, where Latino immigrants are a relatively new population (Marrow 20 II).

A wide range of stakeholders participated in the stormy debates that erupted around Santillan's treatment and subsequent death, among them the two medical institutions involved in her care, the media, right-wing political pundits, and a white, middle-aged, local businessman named Mack Mahoney who first learned of Santillan's illness from the local news- paper. Compelled by her plight, Mahoney founded a charity to support her medical care and became the family's informal, if self-appointed, spokesman. In his public statements, Mahoney cited Santillan's youthful innocence as well as her frail, deteriorating body as evidence that she was a deserving candidate for transplant surgery. At times. he even infantilized her by describing her as a dying "baby" even though at 17 she was nearly a legal adult (Wailoo et al. 2006: 304).

108 Ham/hook of migration and health

Following her death, a heated media debate focused on Santillan's unauthorized migration status. Conservative commentators leveraged her story to intervene politically in national conversations about immigration. Right-wing pundit Michelle Malkin, for instance, contended that Santillan symbolized a larger problem in the US where "[tjhe costs of illegal alien healthcare are crippling hospitals across the country" (Malkin 2003). In Malkin's narrative, Santillan was one of millions of "illegal aliens" flood- ing the country seeking access to already scarce resources.

Yet Malkin's account ignored several key facts. First, unlike most unauthorized migrants in the US, Santillan's mother was covered by an employment-based private health insurance policy. Given the US's employment-based insurance system, Santillan therefore was covered as her dependent. Additional costs were covered by private donations gener- ated through Mahoney's charity.

Another conservative columnist, Joe Kovacs, compared Santillan to a different young woman awaiting a lung transplant, Lauren Averitt. According to Kovacs, Averitt-a desperately ill, law-abiding citizen- clearly was more deserving than Santillan. "[Iljlcgal aliens like Santillan," he wrote, "are able to leapfrog ahead of the many thousands of U.S. citizens patiently waiting and praying for their own personal miracle" (Kovacs 20(3). From his standpoint, citizenship is more than a legal status; it is imbued with moral meaning-with life-or-death implications. Santillan's unauthorized border-crossing is portrayed as both criminal and immoral, as is her supposed desire and ability to jump ahead of US citizens on the transplant waiting list. In this account, Santillan herself is assigned culpability despite her youth and vulnerability, and even though her mother (and not she herself) initiated their migration.

The institutional stakeholders, Duke Medical Center and the United Network for Organ Sharing (UNOS), took a markedly different tactic. In their official responses, neither addressed Santillan's legal status. Each issued a carefully worded public statement in a cool, professional tone that contrasted sharply with the heated media fervor. Duke's response was particularly measured, likely due to concerns about legal liability for Santillan's death.

Much can be learned from this case about how migrants' health-related deservingness is reckoned. Above all, the contentious conversation fol- lowing Santillan's death reveals just how low the threshold can be for involvement as a stakeholder -_.and, moreover, how quickly a relatively distant set of stakeholders can turn a localized discussion about a particu- lar individual's health needs into a lightning rod for much broader public debate.

Health-related deservingness 109

Not Sick Enough: Illness, Vulnerability, and Descrvmgness in Western Europe

In 200S, a very different deservingness debate unfolded in the United Kingdom about Ama Sumani,? a 39-year-old woman of Ghanaian origin and mother of two who was forcibly removed from her hospital bed in Cardiff, Wales, where she was being treated for malignant myeloma, a form of cancer (Lawrance 2012). Five British Home Office agents moved her into a wheelchair, drove her to Heathrow Airport, and put her on a plane to Ghana against her will. Before her "removal"] from the UK, Sum ani had appealed the decision and petitioned to remain on compas- sionate grounds due to the life-threatening nature of her illness and lack of accessible treatment in her home country. Her appeal was denied. Unable to access treatment in her country of origin, she died two months later.

Sumani's case highlights the critical impact of context on local deserv- ingness debates and their outcomes. How did historical, political, and legal circumstances influence her treatment by the British authorities'? How might her fate have been different had her case been adjudicated in France'? We explore these questions below.

In the heated public debate about Sumani's case, some British physi- cians and other sympathetic observers argued that her forcible removal would constitute a gross human rights violation. A Lancet editorial labeled it an act of "atrocious barbarism" and rightly anticipated that. her deportation would precipitate her death (Lancet 200S). Yet several Members of Parliament vocally supported the Home Office actions. Without denying the likelihood of her imminent death, they claimed her case failed to meet the necessary threshold of "very exceptional" suffering required to activate the country's humanitarian relief mechanism.

In the UK, healthcare provision to migrant populations historically has been uncontroversial, and until relatively recently access to care was virtually the same for all. After an increase in asylum applications in the 1970s and 19S0s, however, anxieties about growing migrant populations spurred the passage of laws distinguishing between "ordinary residents" eligible for free healthcare through the National Health Service and "non-ordinary residents" who can access only certain health services, and only for a fee (Lancet 200S). Seriously ill migrants ordered to leave the UK may seek relief from removal through appeal under Article 3 of the European Convention on Human Rights, which prohibits any action that would constitute "inhuman treatment" (Council of Europe, 1950). Decisions regarding humanitarian relief are made by an immigration judge on a case-by-case basis. Surnani's case was deemed unexceptional, and her appeal was denied (Lawrance 2012). . .

110 Handbook of migration and health

How might Sumani's fate have been different in France? In both countries, unauthorized migrants often are regarded with suspicion. Yet French policies regarding sick migrants have tended to be more favorable than their British analogs. In 1998, following an intensive campaign by a coalition of advocacy organizations, an informal, discretionary practice of granting temporary residency permits to seriously ill migrants became institutionalized (Tick tin 2011; Fassin 2(12). The resulting new arrange- ment, an "illness residency permit," was created precisely to prevent the deportation of people with serious illnesses who would lack access to appropriate care following repatriation-people like Ama Sumani.

On the surface, the contours of the French and UK policies are similar. Both revolve around the same questions: Does the migrant's illness meet the threshold of "life-threatening" severity? Would appropriate treatment be accessible in his or her home country? What differs is the deserving- ness threshold, which would appear to be lower in France. Importantly, medical experts play an integral role in the French context, whereas immigration officers are the primary adjudicators in the UK (Fassin 20 II; Larchanche 2012; Ticktin 2011). In Arna Sumani's case, context made all the difference,

"Pirate" Daycares and Infant Deaths in Israel"

During a six-week period in early 2015. five infants died in Tel Aviv in what advocates and the Israeli media describe as "pirate" daycares, or "child warehouses," in the city's neglected southern neighborhoods. Among them were two four-month-old babies who died within a 48-hour period. The local media were quick to publicize the circumstances of their deaths (see. for example. David 2015; Kashti, 2015; Vilnai 2015a, 2015b. 20 15c). both involving infants born in Israel to Eritrean parents who had arrived. without authorization. seeking asylum.

In the first of these cases, a baby girl was left alone in a crib with a bottle of formula (Vilnai 20 15b), possibly tied to her head (David 2(15), and choked to death. The next day. in an adjacent neighborhood, a baby boy died of suffocation; his death went unnoticed until his mother came to pick him up after work and found him lying on his stomach. unresponsive. Immediately after this pair of deaths, migrant advocacy organizations and human rights groups demanded swift government action. and the media reported on "marathon meetings" in the subsequent days "among the relevant government ministries, in collaboration with the municipality" (Vilnai 2015c). Had the deceased infants been born to Jewish-Israeli citizen parents rather than non-Jewish asylum seekers from Africa, how might their fates have been different?

Health-related deservingness III

For nearly two decades, "pirate" daycares like these have been the only viable option for most infants and toddlers (age 0-3) born in Israel to unauthorized migrant parents, including both migrants who arrived explicitly in search of work and those, like the Eritrean parents of these unfortunate children, who arrived seeking asylum. Although asylum- seekers in Israel are officially forbidden to work, they receive no benefits from the government and therefore must find employment in order to sustain themselves and their families. Their employment options are thus sharply limited, pay is low, work conditions are often harsh, and parents have little flexibility in determining their work schedules. As a result, some children are in daycare for IS hours per day or more-or even overnight, in some cases for multiple nights in succession.

Significantly, no public daycare frameworks are provided for any chil- dren in this age bracket, including Israeli citizens' children. Yet the private daycares that serve Israeli parents face tighter scrutiny-not only from the authorities, but also from parents who, as citizens, risk little in voicing their concerns.

As of 2015, an estimated 70-80 "pirate" daycares were operating in the Tel Aviv area, serving approximately 2,500 children and charging as little as 500 Israeli shekels (approximately US$132) per month for care that often exceeds what counts as "full-time" by Israeli standards (Vilnai 20 15b; Mesila staff, personal interview). For Israeli politicians, the media, and the broader public, this spate of deaths came as no surprise; in the pre- ceding two years, at least ten others had been recorded in similar settings (Vilnai 20 15c). ]ndeed, the risks and dangers of these unregula ted daycares had been detailed, and roundly condemned, in the State Comptroller's 2013 annual report (Office of the State Comptroller, 2013).

Thousands of children do survive these settings, but the short- and long- term risks are legion-and well-known. In many such daycarcs, a single adult, usually a woman with a migrant background, is responsible for as many as 20 or even 30 children (Office of the State Comptroller, 2013) whereas the national average ratio in Israel is one to six (David 20 IS). As a result, children tend to spend as much as 12-15 hours each day isolated in a crib with no daily routine and with minimal attention, physical contact, or direct interaction with others, whether children or adults. Neither do they receive much stimulation (e.g., stories, toys, music, art activities, outdoor playtime), although televisions are sometimes present. Most facilities are located in crumbling residential buildings, often in private apartments where rents are cheap. Among other hazards, many lack fire escapes and adequate ventilation, and some have unauthorized electrical connections, unsecured doors or gates, and unsafe balconies.

From a health standpoint, the long-term impact of spending one's

112 Handbook ofmigration and health

critical first years in a setting like these is almost universally devastating. According to Mesila, a municipally-run social welfare organization in South Tel Aviv that had been responding to these unregulated care set- tings and their effects for more than a decade: "By the time they enter formal educational settings, everyone of these children suffers at least one if not more forms of developmental delay" (Mesila Aid and Information Center 2006). They continue: "we are convinced that the overwhelming majority of infants and young children in these frameworks meet the cri- teria for children at risk as a result of spending most hours of the day in an atmosphere of physical and emotional deprivation that severely delays their development" (Mcsila Aid and Information Center 2006). These con- clusions were echoed in the 2013 State Comptroller report.

What "common-sense" assumptions and moral commitments make it possible for key stakeholders in the political and policy realms to ignore these well-known risks for years, even decades? The infants who died cer- tainly could not be suspected of poor moral character. In terms of niigra- tion motive, they were neither economic nor forced migrants; although their parents ned countries in tumult, they were born in Israel. Since Israel has no jus soli provision, however, they are not eligible for Israeli citizenship.

One might expect that their young age and associated vulnerability would garner concern for their health and development, and in some respects, this has been the case. Since the 2000s. children of migrant parents have been among the few members of migrant communities for whom national and municipal stakeholders have expressed concern. For example, a small network of supervised private daycares (Unitaf) was established under the supervision of Mesila in 2005, with major philanthropic (as opposed to government) support. Unitaf daycarcs are roughly comparable to those serving Jewish-Israeli children, but they arc more expensive for parents than the informal arrangements described above-and they serve just 350 children in total, with a waiting list of many more.

Changes benefiting these children have been driven both by pressure from local migrant and child advocacy groups and, not insignificantly, by a cultural emphasis on children and reproduction that has long found expression in the country's robust and institutionalized tradition of (selec- tive) pronatalism (Kahn 2000; Kanaaneh 2(02). Yet the overriding factor shaping Israeli attitudes toward children of migrant parents is social prox- imity. The clearest illustration of how proximity is reckoned in Israel is the country's "Law of Return." Established to invert the genocidal logic of the Nazi regime, this legal provision offers full citizenship benefits to anyone with a bureaucratically legible tie to the Jewish people. For those who lack such a tic, however. citizenship, and even permanent resident status, are

Health-related deservingness 113

almost completely unattainable regardless of country of origin or current legal status.

On the basis of this ethnonational logic, virtually everyone residing in Israel falls into one of three groups: ratified citizens (Jewish-Israelis, including the native-born and immigrants arriving under the Law of Return); Palestinians (who are represented as the country's "real" Others); and "other" Others-global migrants who have arrived in Israel for a variety of economic and/or political reasons and cannot readily be slotted into either of the first two groups (Willen 20 I0). For the vast majority of politicians, policymakers, and citizens, societal attention, investment, and care ought to focus primarily-some would say exclusively-on the country's Jewish-Israeli citizens. Other groups are constructed not simply as undeserving, but as a threat to the country's economy, identity, and even in some instances its existential security.

Immediately after this wave of infant deaths, the Prime Minister's Office announced it would begin working with Mesila to scale-up the small network of Unitaf daycares (which would continue to rely heavily on support from private philanthropy) (Mesila Aid and Information Center 2(15). It is impossible to know precisely how key stakeholders' responses might have differed had the deceased infants been born to Jewish-Israeli citizen parents rather than African asylum seekers. Given the contours of Israel's local moral economy (Willen 2(15), however, it seems likely that state, local, and non-government actors, under pressure from citizens and the media, would have responded much sooner-and with considerably greater decisiveness.

CONCLUSION: OPERATIONALIZING HEAL TH- RELATED DESERVINGNESS

In this chapter, we have outlined an analytical framework for inquiry into a crucial but under-examined issue: health-related deservingness, especially as it applies in migration settings. By highlighting the key role played by stakeholders, contextual factors, and evaluative criteria in debates about deservingness, we aim to set the stage for broader interdis- ciplinary investigation of the moral, ideological, and political assumptions that undergird local debates about the health status of migrants as well as other vulnerable groups.

Our preliminary efforts to apply this framework highlight several insights that merit further inquiry. First, conceptions of deservingness are fundamentally expressed in a moral register; they are vernacular expressions of value as opposed to juridical notions of right. As such,

114 Handbook of migration and health

deservingness inevitably is reckoned in ways that are relational, condi- tional, context-dependent, syncretic, affect-laden, and mutable.

Second, because deservingness is reckoned in fundamentally moral and relational terms, stakeholders' presumptions can play at least as powerful a role as empirical data, if not more so. Indeed, given the ease, and speed, with which information-including misinformation-can be disseminated through digital media, the diminishing role of empirical evidence in public and political debate is a matter of grave concern.

Yet dcservingness assessments are not purely subjective; for some stake- holders, professional expertise plays an influential role, and professional and personal commitments can become deeply entwined. As such, efforts to change the tone, tenor, or outcome of debates about migrants' health- related deservingness may well depend on researchers' ability to uncover these hidden values and assumptions and demonstrate their impact in multiple domains, including the domains of public discourse, social policy, program implementation, and clinical practice.

One final insight merits particular attention. At the moment, we know altogether too little about how different migrants and members of other vulnerable groups conceptualize their own health-related deservingncss. What sort of social contracts do they perceive, or envision? How do they participate in, or respond to, the often contentious descrvingness debates transpiring in their communities of residence? What barriers, if any, impede their participation? Migrants' role as stakeholders, their views of the contexts and communities in which they live, and their deserving- ness criteria-as well as their engagement with and reactions to criteria espoused by others--eonstitute critical areas for future research.

ACKNOWLEDGEMENTS

Portions of this chapter draw from two of the first author's earlier publications (Willen 20l2a, 20l2b).

NOTES

I. Although the terms "migrui.t" and "immigrant" often arc used interchangeably. they arc not synonymous. Often these terms are employed as ostensibly neutral. empirically grounded descriptors of particular individuals or groups. yet diflCrent terms convey dif- fcrcnt ideological messages about who is expected to keep moving and who deserves to stay. Since individuals on the move often do not and perhaps cannot know whether their residence in a given location is temporary or permanent. or what sort of status will ultimately he available to them. the open-ended terms "migrants" and "migration" hew

Health-related deservingncss 115

closest to the variability, as well as the uncertainty, associated with many contemporary patterns of human mobility.

2. Sumani arrived in the UK in 2003 on a tourist visa. She later obtained a student visa and enrolled in finance classes, but her poor English skills and insufficient educational prcpa- ration prevented her from completing her course of study. Her myeloma was diagnosed in 2006, and shc was placed on dialysis after the cancer spread to her kidneys. The Ilomc Office ordered her "removal" to Ghana, arguing that her employment violated the terms of her student visa (Lawrance 2012).

3. In the UK, the response to visa violations is "removal," which docs not affect a migrant's opportunity to apply for future visas, rather than "deportation,' which docs. Migrants may be deported if they havc committed crimes or entered illegally (Blinder 2015).

4. Data for this section draw on ethnographic research conducted by the first author in Tel Aviv in 2014, supplemented by official reports and media coverage. This research phase, part of a larger study initiated in 2000, included interviews with staff at Mcsila; visits to three "pirate" daycarcs; and an interview with the head of a Unitaf daycarc.

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