Based on the discussions we had about the health disparities experienced by migrant populations, address the following questions:
Why do health disparities exist for migrants?
What consequences do migrants experience due to the lack of access to healthcare?
Let's brainstorm on practical steps we can take to address the lack of bio-legitimacy for unauthorized migrants on a global scale.
600-700 words
Sarah S. Willen Department of Anthropology University of Connecticut
Do “Illegal” Im/migrants Have a Right to Health? Engaging Ethical Theory as Social Practice at a Tel Aviv Open Clinic
As the notion of a “right to health” gains influence, it is increasingly deployed in ways that are diverse, contextually variable, and at times logically inconsistent. Drawing on extended fieldwork at an Israeli human rights organization that ad- vocates for “illegal” migrants and other vulnerable groups, this article contends that medical anthropologists cannot simply rally behind this right. Instead, we must take it as an object of ethnographic analysis and explore how it is invoked, de- bated, and resisted in specific contexts. Critical ethnographies of right to health discourse and practice can enlighten us, and help us enlighten scholars in other fields, to the complexity, messiness, and “mushiness” (Sen 2009) of this right, espe- cially in the context of advocacy on unauthorized im/migrants’ behalf. It can also deepen understanding of the complicated and sometimes tense relationships among human rights, humanitarianism, and other contemporary idioms of social justice mobilization, especially in the health domain. [right to health, migrant “illegality,” im/migrant health, human rights, idioms of social justice mobilization]
In seeing health as a right, we acknowledge the need for a strong social commitment to good health. There are few things as important as that in the contemporary world.
—Amartya Sen, 2008
In the context of Western democracies, health today appears to be endorsed as a kind of meta-value, and speaking in the name of health is one of the most powerful rhetorical devices. The discourse of human rights reflects the fundamental value ascribed to health, by addressing health itself as a kind of meta-right. At the same time, at a national level the notion of a “right to health” appears now more controversial and problematic than ever.
—Monica Greco, 2004
Vulnerable Migrants Have a Right to Health
—Editorial headline, Lancet, 2007
MEDICAL ANTHROPOLOGY QUARTERLY, Vol. 25, Issue 3, pp. 303–330, ISSN 0745- 5194, online ISSN 1548-1387. C© 2011 by the American Anthropological Association. All rights reserved. DOI: 10.1111/j.1548-1387.2011.01163.x
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As the 5:00 P.M. hour drew near, a multinational, polyglot crowd gathered on the stoop outside the narrow storefront housing the volunteer-run Open Clinic for Migrant Workers in south Tel Aviv. The clinic, run by the Israeli human rights orga- nization Briut ve’Zh.uyot Adam (BZA; Hebrew for “Health and Human Rights”),1
is the only primary health care institution consistently open and accessible to the estimated 150,000 unauthorized transnational migrant workers who began settling in Israel in the latter half of the 1990s. Located on an otherwise sleepy block in the heart of the city’s, and country’s, largest migrant enclave, the tiny storefront was readily identifiable from afar by its green-lettered sign in Hebrew, English, and Arabic and by the array of world flags affixed to its floor-to-ceiling streetfront windows.
By the time the director removed the heavy steel padlock from the front door and invited patients to be seated in the row of white plastic patio chairs lining the improvised waiting room, the front stoop was crowded with people hoping for a chance to see a doctor. Given the high patient volume, the unwieldy doctor– patient ratio, and each evening’s scant four hours of clinic time, patients’ waits were inevitably long, and latecomers were sometimes turned away. Each day, an unpredictably diverse assortment of patients came to the clinic with an equally varied array of health concerns. On this particular Sunday, for instance, the list included regulars like Frederick, a chatty, middle-aged Nigerian man who had stopped in for his periodic blood pressure check, along with new patients like Norma, a middle- aged Filipina woman with a stubborn rash on her arm; Constantin, a Romanian man whose girlfriend needed a gynecology appointment; and Linda, a disgruntled young South African mother who, the clinic director told me in a whisper, the doctor suspected might be HIV positive, as might her one-month-old, Israeli-born baby.
For the clinic’s patients, marginalization, “illegalization,” and criminalization are no mere abstractions. Whereas Israeli migrant advocates and activists iden- tify people like Frederick, Norma, Constantin, and Linda in descriptive terms as “unauthorized labor migrants” (mehagrei avoda le’lo ashra), in vernacular discourse they often are labeled disparagingly as “illegal foreign workers” (ovdim zarim lo khuki’im)—a term with powerful negative associations. Linked semantically to the biblical term for idol worship (avodah zara), the Hebrew term for “foreign worker” (oved zar) foregrounds these im/migrants’ Otherness, and it ascribes social value only to the labors of their “working hands” while diminishing, or even denying their humanity. At the same time, it also ignores the crucial fact that the condition of migrant “illegality” is nothing natural or self-evident, but, rather, a complex, ide- ologically charged social construction.2 For these uninvited residents, and for their counterparts in other migration settings, the forms of discursive, social, and biopo- litical exclusion that accompany migrant “illegality” often translate into adverse living and work conditions, poverty, the perpetual threat of arrest and deportation, chronic stress, and other factors that interact syndemically (Singer 2009) to heighten vulnerability to illness and injury and to increase their likelihood of abandonment by prevailing systems of public health and clinical care. Undergirding these em- bodied forms of “bio-inequality” is a fundamental denial of what Fassin (2009) calls “biolegitimacy.” Put bluntly, neither the state nor society finds unauthorized im/migrants’ health, or their lives, particularly deserving of attention or concern (cf. Willen forthcoming-a, 2010b).
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Despite Israel’s nationalized health care system, world-class systems of medical education and care, and proud position on the global cutting edge of medical tech- nology, when people like Frederick, Norma, Constantin, and Linda have health needs, they have virtually nowhere to go but the tiny, resource-strapped BZA Open Clinic. Since its establishment in 1998, this small, makeshift health center has accu- mulated well over 50,000 patient files, undergone multiple changes in professional leadership, and relocated several times. In material terms, it has little to offer its patients other than a small stock of donated medications, a few pieces of donated medical equipment (an ultrasound, an EKG), and a seemingly boundless supply of volunteer energy. With these meager resources, as I observed during my years as a volunteer receptionist and participant-observer (2000–03) and briefer return visits (2005, 2007, 2008, 2010), the clinic’s director and volunteer team struggled daily to help patients with health problems ranging from childhood illnesses and common colds to work injuries, chronic diseases like heart disease and cancer, and infectious killers like tuberculosis, hepatitis, and HIV. What leads BZA activists to recognize and respond to the suffering of people whom the Israeli state and society seem com- fortably to ignore? As I argue in this article, what unites BZA’s activists, including both their professional staff and their large team of volunteers, is a fundamental rejection of political discourses and government policies that deny unauthorized im/migrants’ biolegitimacy—that is, that categorically exclude im/migrants from the broader moral community. Significantly, however, it would not be accurate to say that all activists at BZA, which explicitly self-identifies as a human rights orga- nization, are equally committed to the proposition that “illegal” im/migrants have a right to health. A close ethnographic look at BZA reveals that this beguilingly simple assertion is actually a matter of considerable epistemological, ethical, and practical confusion and debate.
Although the anthropology of human rights has grown by leaps and bounds in the past 15 years, the notion of a human right to health—for unauthorized im/migrants or anyone else—has yet to become a robust object of anthropological study. Perhaps this paucity of attention should come as no surprise, for as recently as 1994 it was possible to say that, “The phrase ‘right to health’ is not a familiar one” (Leary 1994:24). Since these words were published (notably, in the inaugural issue of the now well-established journal Health and Human Rights), the right to health has become a prominent concern in myriad fields of scholarship including legal studies,3 bioethics,4 public health,5 clinical medicine,6 and medical anthropology.7
Beyond the academy, it has also become a crucial rallying point for communities of advocacy, activism, and practice. In these pages, I refract this burgeoning discussion about the nature, content, and implications of the right to health through the lens of my long-term fieldwork at BZA’s Open Clinic to pose several questions for anthropological consideration. First, what is meant, or implied, by the notion of a right to health? How do the meaning and significance of this right vary when it is invoked—either with enthusiasm or with disdain—by activists, lawyers, moral philosophers, public health professionals, medical anthropologists, and politicians, among others? Second, what do divergent actors seek to accomplish by invoking this right, lobbying for it, or repudiating it? Third, whose right is this? Whose is it to claim, and whose is it to enforce? Fourth, how do invocations of this right intersect with humanitarian, Hippocratic, and other impulses to mobilize in response to social
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injustice? Finally, how ought medical anthropologists to engage the right to health theoretically, empirically, and in practice?
Rather than tackling each of these questions in turn, this article instead explores ethnographically how a single human rights NGO translates—or, more precisely, struggles to translate—personal and institutional commitments to unauthorized im/migrants’ right to health into particular forms of discourse and practice. Running alongside this empirical thread is a theoretical challenge. Medical anthropologists, I propose, need to avoid simply rallying behind the notion of a right to health; in- stead, we ought to approach it as an ethnographic object and critically examine how it is invoked, debated, advanced, and resisted in specific local contexts. We need to survey and analyze the broad constellation of claims that employ this common discursive framework, and we need to explore this right ethnographically in all its guises: as a legal instrument, a social object, a rhetorical flourish, a node of con- tingent and precarious political consensus, a framework for translating theory into practice, and, finally, a recognizable, branded strategy for advancing a particular set of ethical or political commitments—what we might call a contemporary idiom of social justice mobilization. Finally, and as importantly, we need to ask ourselves what we mean when we invoke the right to health in our own research, writing, teaching, and advocacy efforts.
These are crucial questions for medical anthropology, not least because there exists a strong, indeed uncharacteristic, tendency among medical anthropologists to support this proposition almost without question. The notion of a right to health is appealing because it taps into a deep desire for social justice that many of us share. It evokes a sense of moral clarity absent from much of our professional engagement, and it implies a forceful, even immediate call to action. Specifically, it offers a pointed response to the scourge of preventable injuries that are not prevented, curable diseases that go uncured, and other forms of useless suffering that medical anthropologists witness regularly in the course of our work. It is the language of key leaders in our field—for many of us, our heroes. Few moral or political claims touch anthropologists as deeply or evoke as uniform a response. Without questioning the nobility of these aims or the legitimacy of these desires, we need to acknowledge the fuzziness or, to borrow from Amartya Sen (2009:355), the “mushiness” of this particular right and subject it—and our reflexive support for it—to critical review.
In proposing that medical anthropologists take the right to health as an ethno- graphic object, my aim is neither to impute naı̈veté to its advocates nor to undercut the growing movement to translate it into law, policy, and practice; to the contrary. Instead, I propose that critical ethnographic engagement with right to health dis- course and practice can enlighten us, and help us enlighten scholars in other fields, to the complexity, messiness, and “mushiness” of this right, both in general and for activists on behalf of unauthorized im/migrants in particular. At the same time, it can also deepen our understanding of the complicated and sometimes tense rela- tionships among human rights, humanitarianism, and other scholarly and popular idioms of social justice mobilization, especially in the health domain.8
One important step in this regard is to strengthen the bridge between medi- cal anthropology and the anthropology of human rights. A decade ago, Richard Wilson noted that human rights language had become “detached from its strictly legal foundations and [become] a generalized moral and political discourse to speak about power relations between individuals, social groups, and states” (2001:xv).
Ethical Theory as Social Practice at a Tel Aviv Open Clinic 307
He called on ethnographers “to look beyond the formal, legalistic, and normative dimensions of human rights, where they will always be a ‘good thing,’” and instead look “at how rights are transformed, deformed, appropriated, and resisted by state and societal actors when inserted into a particular historical and political context” (Wilson 2001:xvii). In a similar vein, Mark Goodale charges anthropologists to maintain a “skeptical distance from the exalted claims of human rights” while ana- lyzing the “different registers through which the idea of human rights is conceived” (2006:32), and Levitt and Merry call attention to the “vernacularization” of human rights discourse by local actors (2009). Analytic tools like these can help clarify what is meant, what is desired and, no less importantly, what is feared when the right to health is invoked. Medical anthropologists have asked similar questions of human- itarianism,9 but our relative inattention to right to health claims has impeded both our analyses and our understanding of the complex relationships among different idioms of social justice mobilization—including those identified as human rights– based or humanitarian. As I elaborate below, the relationship between these two idioms of ethical engagement can become especially complicated in the context of health advocacy on behalf of unauthorized im/migrants in industrialized countries.
To develop this argument, I draw on extended fieldwork at BZA, an Israeli NGO that works to advance right to health claims on behalf of “illegal” im/migrants and other vulnerable groups, including Palestinians in the Occupied Palestinian Territories (OPT), prisoners and detainees in Israeli custody, refugees and asylum seekers, and average Israeli citizens who are having difficulty realizing their right to health. The article begins by surveying the landscape of contemporary formulations and interpretations of the right to health. An overview of my research approach and methods follows. In the remainder of the article, I draw on ethnographic findings to explore how right to health commitments are expressed and negotiated by BZA activists. Here I trace the Open Clinic’s origins, activities, and internal political fissures, then introduce three BZA activists with divergent backgrounds, political inclinations, and personal motives to exemplify the organization’s internal diversity. The final section then analyzes the arc and content of a fiery intraorganizational debate revolving around the core question of this article: What does it mean to assert that unauthorized migrants have a right to health? Read in tandem, this trio of activist portraits and closely related “critical event” (Das 1995) reveal the epistemological and ethical friction between human rights and humanitarian modes of advocacy on unauthorized im/migrants’ behalf. These findings also show how the specific content of this right, as well as its potential for realization, often depend less on formal points of national or international law than on vernacular assessments of “deservingness” (Willen forthcoming-a)—that is, on questions of ideological commitment, morality, and ethics bearing a distinctly local cast.
The Right to Health: Foundations and Contestations
What exactly are human rights? Are there . . . really such things?
—Amartya Sen, 2009
According to Amartya Sen, a commitment to human rights “can be very attractive as a general belief, and it may even be politically effective as rhetoric,” yet “[m]any
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philosophers and legal theorists see the rhetoric of human rights as just loose talk— well-meaning and perhaps even laudable loose talk—which cannot, it is presumed, have much intellectual strength” (2009:355). This skepticism, Sen notes, is as old as the idea of rights itself. In a blistering 1791 attack on the recently declared “rights of man,” for instance, philosopher Jeremy Bentham declared natural rights “bawling on paper” and “rhetorical nonsense, nonsense upon stilts” (cited in Sen 2009:356). Are human rights as “loose” or “nonsensical” as critics allege?
In principle all human rights are equal and indivisible, but civil and political rights (sometimes called “first-generation rights”) have garnered much broader recognition and support, and proven more readily justiciable, than economic, social, and cultural rights (ESCR, or “second-generation rights”). In Paul Farmer’s terms, ESCR have long been “the neglected stepchildren of the human rights movement” (2005:xxiv). Yet things have begun to change because of, in part, increased attention to ESCR in diverse fields of scholarship; increased interest and commitment at the United Nations, which in 2002 created the new role of Special Rapporteur on the Right to Health; and the work of international NGOs like Partners in Health and, more recently, Amnesty International (Khan 2009).
These developments notwithstanding, human rights concepts, and especially the notion of a right to health, often are deployed in a freewheeling manner. As Gostin (2002:18) explains, this frequent overextension generates conceptual and epistemo- logical confusion, and it begs the question: What is the right to health? Is it a legal instrument, as proposed in a recent Lancet editorial (2008b)? Is it a framework for developing and implementing policy, as proposed by the inaugural UN Special Rapporteur Paul Hunt (2007)? Is it a moral imperative demanding a lifetime of committed action, as Paul Farmer frequently insists (2005, 2010)? Is it a floating assertion that neglects crucial questions of duty and priority, as bioethicist James Dwyer contends (2004)? Or is it simply a catchy slogan or bumper sticker? From a medical anthropological perspective, how might we make sense of these “differ- ent registers” (Goodale 2006) of right to health discourse and the divergent ways in which this right becomes “transformed, deformed, appropriated, and resisted” (Wilson 2001)?
Until recently, three broad orientations to the right to health predominated: (1) legal approaches grounded in post-WWII international law (incl., in particular, Article 12 of the International Convention on ESCR [Office of the High Commis- sioner for Human Rights 1976] and UN General Comment 14 [United Nations 1966]); (2) ethical approaches grounded in moral philosophy; and (3) symbolic or rhetorical approaches. A fourth approach emerged in the mid-2000s when public health leaders began translating this right into the language of policy making and evaluation, and a fifth approach may be emerging in the clinical realm, for instance among European physicians using top-tier medical journals to debate the meaning of this right in clinical practice.10
Across this range of approaches, divergent interpretations abound. Are all en- titled to the “highest attainable standard of health,” as stipulated by General Comment 14? If so, how is that “highest attainable standard” defined, and by whom? Are all entitled to the social determinants of good health? To be healthy, tout court? Some have argued that the notion of a right to health status is “obvi- ously absurd” (e.g., Leary 1994:28). Others, including Yamin (1996), argue that it is
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possible to define health in a manner that permits discussion of a right to health sta- tus. The boldest medical anthropological voice in these conversations comes from Farmer, who sees the right to health—“perhaps the least contested social right” (2005:19)—as one thread in a tightly woven fabric of economic and social as well as civil and political rights. As he declared in his keynote at the 2006 American Public Health Association convention in Boston, “if we believe in health and hu- man rights, we will need to broaden, very considerably, our efforts to promote social and economic rights for the poor. This, I would argue, is the leading human rights issue now facing public health” (Farmer 2008:8). Clearly the meaning of this right broadens, contracts, shifts, and evolves as it cycles through divergent spheres of discourse, policy, and practice.
Do “Illegal” Im/migrants Have a Right to Health?
What do these debates have to say about the health needs, rights, or entitlements of unauthorized im/migrants? Thus far, relatively little. In the past several years, the adverse health implications of migrant “illegality” have begun to garner increas- ing attention in medical anthropology and related fields, and a handful of scholars have engaged unauthorized im/migrants’ right to health directly.11,12 Yet, as several colleagues and I contend (this issue), we still lack a clear, robust theoretical frame- work for research on “illegality” and health, both within medical anthropology and writ large. In sketching the contours of a viable research agenda, we priori- tize four concerns whose cascading consequences have profound implications and raise thorny dilemmas for unauthorized im/migrants, their families, and the broader social and political communities in which they live and work. These include (1) the socially, politically, and ideologically constructed nature of migrant “illegality”; (2) the broad question of who benefits from contemporary processes of unauthorized labor migration; (3) the syndemic relationships among “illegality,” inequality, and health-related vulnerability and risk; and (4) the symbolic politics, ethical ground- ing, and discursive contours of debates about migrants’ “deservingness” (Willen forthcoming-a, forthcoming-b) and “biolegitimacy” or lack thereof. In this article, I am concerned primarily with this final point and, specifically, with the fact that moral debates about “deservingness” often take place in a human rights idiom that draws strength from the purportedly universal discourse of international law.
How do local attitudes toward human rights in general, and toward the right to health in particular, affect advocacy efforts on unauthorized im/migrants’ be- half? With this question in mind, let us now turn to Israel, where human rights are not viewed by the general public as an inherently “good thing,” but instead carry powerful connotations of a highly contentious brand of local politics: vocal opposi- tion to the Israeli occupation of Palestinian people and lands. Under circumstances like these, what does it mean to advance an argument on behalf of unauthorized im/migrants’ right to health?
Research Methods and Approach
To engage these questions, I draw on more than 30 nonconsecutive months of ethnographic research conducted between 2000 and 2010 with unauthorized
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transnational im/migrants and Israeli im/migrant advocates in the southern neigh- borhoods of Tel Aviv. In broad terms, the study aims to make sense of how “illegal” migration status is configured by the Israeli state and civil society and, moreover, how this rapidly evolving form of legal (non)classification shapes and constrains im/migrants’ embodied experiences of health, illness, pregnancy, and reproduction, as well as their broader experiences of subjectivity, morality, and being-in-the-world. Put differently, the study employs intersecting lenses of legal anthropology and the anthropology of the state, medical anthropology, and the anthropology of experi- ence in taking a “critical phenomenological” (Desjarlais 1997) approach to migrant “illegality” (see, e.g., Willen 2007a, 2007c, 2010a).
The ethnographic anchors for the study include (1) two communities of unautho- rized im/migrants in Tel Aviv (the Filipino and West African communities),13 and (2) three Israeli migrant advocacy organizations. Since my initial research questions involved unauthorized im/migrant women’s experiences of fertility decision-making, pregnancy, and reproductive health, many of the migrants I first met were pregnant women or new mothers (see Willen 2005). I accompanied a subset of these women, and sometimes their male partners, as they sought either abortions or prenatal checkups, diagnostic tests, and in three cases, labor and delivery in Israeli hospi- tals. I also participated actively in the home, family, and community lives of key research participants and attended a wide variety of community activities including church services, life-cycle events (i.e., weddings, christenings, funerals), holiday and community celebrations, and community meetings.
Of the three migrant advocacy organizations in which I conducted fieldwork, two—BZA’s Open Clinic and a hotline for im/migrants in detention—are local hu- man rights organizations (NGOs) serving migrant workers, asylum seekers, and refugees. The third organization, an Aid and Information Center that serves the same groups, is municipally funded and operated. Intensive, long-term involvement with these three very different organizations provided invaluable opportunities to meet migrant workers, to become a familiar face in the city’s im/migrant com- munities, and to set the study into motion. Furthermore, it enabled me to train a long-term ethnographic gaze on the complicated and dynamic im/migrant advocacy community itself.
Here I focus on research conducted at BZA’s low-tech, small-scale Open Clinic, where I spent approximately three evenings (15 hours) per week as a participant- observer and reception-desk volunteer during my primary period of field research (fall 2000; summer 2001–summer 2003). At BZA I also attended, audio-recorded, and took notes at weekly staff meetings, occasional clinic staff meetings, periodic executive board meetings, and annual planning retreats. Additionally, I conducted a 68-item, self-administered survey in 2002–03 with a multinational convenience sample of 170 English-speaking clinic patients. Survey questions covered basic de- mographics, migration motives, experiences of everyday life in Israel, current health status, health care management strategies, and beliefs about deservingness to health care in Israel (Willen 2005, forthcoming-a). Since 2000, I also have conducted more than 25 semistructured interviews (13 of them audio-recorded) and dozens of informal interviews with BZA staff members and volunteers (clinic directors, the coordinator of the Project on Migrant Workers, young adults performing Na- tional Service at BZA in lieu of compulsory military service, clinical volunteers, and
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reception-desk volunteers). The study was conducted with approval from BZA and from the institutional review boards at Emory University, Harvard Medical School, and Southern Methodist University.
A Shoestring Clinic—and a “Fig Leaf for Shame”?
As I learned early on from Eran Moyal,14 the first coordinator of BZA’s Project on Migrant Workers and inaugural director of the Open Clinic, the clinic was created with two goals in mind: first, to offer policymakers concrete evidence that the country’s growing undocumented population urgently needed health care, and second, to hand responsibility for the clinic, and the problem, over to the state. At no point was it meant to serve as a constant or comprehensive source of health care for this large, linguistically and culturally diverse population. Neither was it meant, as a senior Israeli physician and longtime clinic volunteer put it, to serve “as a fig leaf for the shame of the state and Israeli society” (Fried 2003). Given the scope and depth of need among the country’s migrant workers, the first goal was relatively easy to accomplish. The second, however, has bordered on the impossible, and the clinic remained open and busy as this article went to press.
During my fieldwork, the clinic was open four evenings and one morning per week (approximately 20 hours), and it served as the place of first, and often last, resort for transnational im/migrants with health concerns, especially those without authorization status. The tremendous diversity among the patients mirrored the diversity of health concerns that brought them in seeking care.15 Clinic volunteers, almost all of them Jewish Israelis, were less diverse. Most volunteered in the clinic about one evening per month, although some came more or less frequently. Physician volunteers ranged in age and experience from medical residents to well-known division chiefs at area hospitals, and almost all were middle- or upper-middle-class Ashkenazim (Israelis of European descent). Nurses also ranged widely in age, and the majority were middle class and Ashkenazi. The volunteer reception staff included university students of both Ashkenazi and Mizrah. i (Middle Eastern) backgrounds, pensioners, and a rotating array of others including a veterinarian, a former army medic, the owner of a trendy bookstore–café, and an artist and longtime area resident who volunteered in gratitude to her new neighbors for replacing the drug addicts who used to hang around the neighborhood. Although some volunteers came to the clinic on just one or two occasions, the clinic was staffed by a relatively stable rotating group of volunteer physicians, nurses, and reception staff throughout my primary period of fieldwork. A few volunteers did drop out in this period; for instance, one physician moved away from Tel Aviv, another had a stroke, and a third took a lengthy break but later returned. Several elderly volunteers stopping coming when they became hampered by failing eyesight or an inability to drive, and some younger volunteers stopped coming when they left the country to travel or study abroad. All clinic staff and volunteers were continually challenged, and often deeply frustrated, by the high patient volume, the gravity of the health issues patients faced, and the clinic’s embarrassingly limited resources. The risk of burnout was highest, however, for the professional staff member responsible for directing the clinic, a role that changed hands several times during my fieldwork.
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Although the clinic’s initial mission focused narrowly on primary care, it quickly expanded well beyond its original scale and scope. During my years in the clinic, staff and volunteers worked assiduously to confront virtually every health issue that arose, even when a patient’s need far surpassed the small clinic’s capabilities. Typically the more challenging cases involved finding volunteer physicians willing to perform procedures in their own (publicly funded) clinic offices or in a donated (often private) surgical space. Through such efforts, the clinic managed to arrange minor outpatient surgeries like the removal of suspicious moles; more substantial surgeries like hernia operations; and occasionally major surgeries, for instance to treat breast cancer, ovarian cancer, and in one case a benign but rapidly growing brain tumor. At one point, a volunteer oncologist even administered chemotherapy in his own kitchen. Clearly, the clinic was far from equipped to meet its patients’ needs; its efforts were like trying to sip water from a gushing fire hydrant.
During the first decade of the 2000s, the clinic underwent several administrative changes and multiple relocations. The size and composition of its patient population also changed dramatically following two major developments: an expensive, high- profile, and occasionally violent mass deportation campaign targeting unauthorized im/migrants (Willen 2007a, 2010a), and a more recent influx of Sudanese and Eritrean asylum seekers and refugees arriving overland via Egypt (Anteby-Yemini 2009; Kritzman-Amir 2010; Willen 2010b). The latter of these events completely overwhelmed the clinic’s capacity, and in spring 2008 BZA temporarily closed the clinic down to protest the government’s neglect of this new im/migrant population’s health needs. Indeed, this temporary closure lays bare the fundamental question that has lingered unanswered since the establishment of the BZA clinic in 1998: Is it most fundamentally a humanitarian endeavor—and, as such, has it become a fig leaf for an eroding welfare state and an array of exclusionary government policies? Or, alternatively, is it a human rights project whose aim is to rectify the causes of individual and group suffering using ethical concepts and legal instruments of international provenance?
BZA and Its “Stepchild”
Sunday afternoon, summer heat, a long row of patients squeezed shoulder to shoul- der in white plastic lawn chairs. The clinic director and a volunteer reception- ist rush back and forth through the cramped clinic space, blue cardboard patient files in hand, crisscrossing multilingual clouds of conversation: Tagalog here, Igbo there, a whispered conversation in Spanish, broken Hebrew accented with Russian, Turkish, Romanian, Chinese. In the improvised examination rooms in back, clinical encounters are staged in whatever language works: Hebrew, English, perhaps Spanish or French, occasionally Russian. For patients, there is little space for pri- vacy, and for clinic volunteers, there is little time or patience for things like patient confidentiality or “cultural competence.” Here volunteers do the best they can: to obtain enough information to open a patient file; to understand a patient’s chief complaint; to find a volunteer specialist here or a discounted procedure there; to squeeze in just one more patient; to keep volunteer doctors from noticing they’ve stayed an extra half hour, hour, two hours.
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Despite BZA’s explicit self-definition as a health and human rights organization, the decision to establish the clinic in 1998 was controversial, and a decade later it still had not won the unanimous support of the NGO’s activist base. Since its creation, a certain tension lingered between the Project on Migrant Workers, which runs the clinic, and BZA’s other projects, especially those focused on the OPT. As one staff member put it, the clinic operated as “a kind of independent autonomy” or a “stepchild of the organization.” On occasion (incl. the turbulent moment addressed in the final section), this “stepchild” status stimulated heated debate about the clinic’s mission, its goals, and even its very existence. To understand what animates these debates, we need to turn back to BZA’s establishment in 1988, just months into the first Intifada (Palestinian national uprising) and nearly a decade before Israel had become a destination for transnational labor migration. The founders of BZA, a small group of health care professionals who opposed the health-related human rights violations committed by Israel against Palestinians in the OPT, understood full well that in contemporary politics, health is a “meta-value,” and “speaking in the name of health is one of the most powerful rhetorical devices” (Greco 2004:1). The fledgling group began organizing under this banner, and it quickly earned a place of respect among the handful of Israeli groups ready to use a human rights platform to work for change, even if that meant tangling publicly with high-ranking politicians, the military, and the courts. The universalizing meta-discourse of health as a human right, these activists wagered, just might trump particularist moral debates in which their community of concern—Palestinians living under Israeli occupation—would otherwise be cast as categorically “undeserving” of attention or care.
“Dreamers,” “Traitors,” and “Self-Hating Jews”: The Local Politics of Human Rights
Complicating this assumption, however, is the fact that human rights discourse is most commonly associated in Israel with political activism against the occupation and in support of the left-wing “peace bloc.” Human rights activists and even journalists who report on Israeli repression and violence in the OPT are publicly doubted, maligned, and subjected to verbal abuse. In early 2011, for instance, one right-wing parliament member sponsored a bill calling for a wide-reaching inquiry into the budgets and finances of local human rights organizations; in expressing support for the bill, a parliamentary colleague went so far as to characterize these organizations as “traitors,” “germs,” and “enemies of Israel.”16
Importantly, antagonism toward human rights is not limited to the far right wing of the Israeli political spectrum. In a 2010 poll, for instance, 57.6 percent of Israelis surveyed agreed that “human rights organizations that expose immoral conduct by Israel should not be allowed to operate freely,” and a majority sup- ported “punishing journalists who report news that reflects badly on the actions of the defense establishment” (Kashti 2010). These developments resonate with the sort of equations I encountered regularly in the field: “human rights” equals “pro-Palestinian”—which equals “Arab lover,” “self-hating Jew,” and other such slurs. Given this strong web of association, many of BZA’s antioccupation activities elicit strong negative reactions from a large segment of the Israeli public, and the
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organization’s commitments often draw local condemnation and ire, rather than the reflexive, commonsense support human rights often garner in other contexts.
Although human rights activism on behalf of groups other than Palestinians is less vigorously condemned, it tends to carry a certain amount of guilt by association. As I learned from a veteran human rights lawyer, scholar, and former academic di- rector of a refugee rights clinic at one of Israel’s top law schools, such accusations of “guilt” sometimes take the form of ad hominem attacks. She and her colleagues, she explained, are accused regularly of being “out of touch with reality, including ignoring the dangers of life in Israel—both physical and economic. You are consid- ered to be a dreamer, an idealist, and that’s not a compliment, but rather a term used to refer to someone who is unrealistic, naı̈ve, and immature.” To borrow Wilson’s term, the social life of human rights in Israel is distinctive indeed.
Transnational Migration to Israel: Multiple Pathways
Significantly, the impetus for BZA’s Open Clinic—the arrival of hundreds of thou- sands of transnational migrant workers in the mid- to late-1990s—was a direct result of the ongoing occupation. Following the first Intifada of the late 1980s, in 1993, the Israeli government began authorizing the recruitment of transnational workers from Thailand, Romania, Bulgaria, and China, among other countries, to replace Palestinians now denied access to their former jobs in Israel on “national security” grounds. Tens of thousands of agricultural and construction workers who arrived “legally” later lost their status, largely as a result of the country’s unregulated and corrupt system of transnational labor recruitment, which has been well documented by Kemp (2004). Briefly, private employment agencies recruit labor migrants and charge them anywhere between $5,000 and $20,000 for the “privilege” of coming to work in Israel—in explicit contravention of Israeli laws prohibiting the extraction of such fees—thereby earning billions of dollars for recruitment agencies based both in Israel and in migrants’ countries of origin (Kemp 2004; Workers’ Hotline and Hotline for Migrant Workers 2007). Local human rights groups estimate that tens of thousands of labor migrants and their families have gone into debt to finance their travel to Israel. Often these recruitment companies have brought workers to Israel even when no jobs were available; in such instances, labor migrants lose their legal status almost immediately after arriving in the country. Meanwhile, tens of thousands of “illegal” migrants from a separate set of world regions (South Amer- ica, Africa, Eastern Europe, and the former Soviet Union) arrived as tourists or Christian religious pilgrims and found work in housecleaning, childcare, restaurant work, and other informal market sectors.17 Per definition, none of these economi- cally motivated transnational migrants can stake a bureaucratically legible claim to Israeli citizenship; put bluntly, none are Jewish.
Although health care is considered a public good in Israel and nearly all physicians are publicly employed (growing neoliberal pressures toward privatization notwith- standing [Filc 2009]), transnational migrants are excluded from the country’s na- tionalized health care system. Theoretically all employers are required to ensure that their employees, regardless of status, possess health insurance, yet this obligation is poorly enforced for “legal” workers and completely ignored for “illegal” workers. Private health insurance options are scarce and deficient, and private fee-for-service
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options are prohibitively expensive. Several exceptional forms of care are available, at least theoretically, including emergency care (albeit at high tourist rates); subsi- dized or even free prenatal care and delivery care (Willen 2005); and subsidized or free treatment for tuberculosis, sexually transmitted infections, and HIV in pregnant women (Filc and Davidovitch 2007; Rosenthal 2007).
Ethical Theory and Social Practice: Activist Motives and Moral Journeys
As the number of transnational migrants grew exponentially in the late 1990s, and as the scope and degree of health need within this diverse population became increasingly evident, some BZA staff and activists felt it necessary to expand the organization’s mission and create an Open Clinic in Tel Aviv. Yet not all BZA staff and volunteers concurred that this new population fell within their bailiwick. Of the activists I interviewed and alongside whom I volunteered, most fell roughly into one of four groups. The first group, health professionals who sharply oppose the Israeli occupation of Palestinian people and lands, were attracted to BZA explicitly for reasons of politics and ideology. For them, BZA is a potent megaphone for anti- occupation messages capable of amplifying international legal principles through the trusted, authoritative voices of clinical medicine and the “meta-value” of health (Greco 2004). Some members of this first group saw any expansion of BZA’s mission as a potential distraction from the organization’s “real” goal: bringing the occupa- tion to an end. A second group included individuals who espouse what is effectively a humanitarian (as opposed to a rights-based) commitment to health care for all. At times, this universalist motivation allowed volunteers to ignore politics and hide in a “Hippocratic bubble” (Portes et al. 2009:495) of individual-level ethical obliga- tion while remaining disconnected, at times myopically so, from the broader social determinants of disease, injury, and ill health, including exclusionary biopolitics and structural violence. Third, although many physicians and nurses were involved with both the Open Clinic and BZA’s antioccupation efforts, a small minority clung to one “side” of the organization’s agenda while remaining deeply skeptical about, or even openly critical of, the other. Finally, a handful of activists, most of them professional staff as opposed to volunteers, described their motives and commit- ments explicitly in terms of universal human rights. For activists in the first three groups, the technical definitions and interpretations outlined earlier in this article were far from their minds; instead, BZA served primarily as a vehicle for advancing a locally specific, and often deeply personal, set of ethical or political commitments. For activists in all four groups, however, the choice to become involved with the clinic often initiated a complicated moral journey with transformative implications.
Below I introduce three activists, each of whom brings a very different set of ethical commitments to his or her efforts on unauthorized im/migrants’ behalf. The first two, physicians Dr. Sarit Peled and Dr. Guy Barkan, belong, respectively, to the first and second of the groups identified above. The final activist, Kobi Levy, is not a physician but a savvy human rights advocate and member of BZA’s professional staff. His role as coordinator of BZA’s Project on Migrant Workers, and his radical agenda for the organization, place him in the fourth group and identify him as one of the few BZA activists committed to an explicit, internationally recognizable human rights paradigm.
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Dr. Sarit Peled: “Why do [migrant workers] deserve this? They choose to come here, right?”
I remember vividly the first time Dr. Sarit Peled visited the Open Clinic in October 2000, primarily because she didn’t know why she was there—and said so. A young resident in internal medicine with a warm smile and a soft voice that could turn sharp in an instant, Dr. Peled spent her first visit challenging the clinic’s longsuffering director, Yael Grossman, to explain and defend the clinic’s raison d’être. Dr. Peled was drawn to BZA because of its work in the OPT, she explained, and she “had never thought about ‘illegal’ foreign workers as a population needing help. Why do they deserve this? Palestinians, prisoners I understand—but why foreign workers? They choose to come here, right? My time is limited,” she continued defensively. “I’m not sure this is worth it.”
Unaccustomed to such demands from potential volunteers, Grossman nonethe- less stepped up to the challenge. In the soft, measured tone I had come to know well from our long evenings together at the reception desk, she riffed on an expla- nation I had heard Israeli migrant advocates at BZA and other organizations offer time and time again. Migrant workers “are not on vacation,” she explained. “The situation in their own countries is so bad. Many want to work and return home. . . . I’m not saying that I—or BZA—think the number of migrant workers in the country should be increased. It should be reduced. Also the minimum wage should be raised.” As Grossman continued her impassioned defense, she traced lines of causality, pinpointed local problems, and concluded on a practical note: “There are two reasons people come to work in the clinic. Either ideology, or to help people. Either is ok. But above all, don’t come if you’re not comfortable.”
Later in the evening, after Dr. Peled had left, Grossman needed to blow off steam. She had better things to do, she told me, than argue with a potential volunteer. “I’m not going to convince anyone to come.” And yet that is precisely what she had done. Two weeks later, Dr. Peled showed up at the clinic as a scheduled volunteer, and again two weeks after that. On that second occasion, I overheard her spontaneously issue a strong defense of the clinic’s mission, echoing many of Grossman’s points. For Dr. Peled and many other BZA volunteers, a politically motivated desire to help Palestinians was the “hook” that got them involved, sometimes to their own surprise, with the Open Clinic’s efforts on behalf of unauthorized im/migrants.
Dr. Guy Barkan: “Way too radical for me”
Like Dr. Peled, psychiatrist Guy Barkan also began volunteering at the Open Clinic during his residency. A long-time clinic volunteer with strong research ambitions, Dr. Barkan noted in a 2007 interview that friends and colleagues occasionally criticized his commitment to the clinic. He repeated one such remark using a biblical phrase that figures commonly in such critiques: “A friend once said to me ‘first take care of the poor of your city’ [aniyei irh. a kodmim]—but the ‘poor of my city’ have ID cards, they have social services, they can access a doctor.”
When I asked about his most memorable experiences at the clinic, Dr. Barkan spoke at length about an African patient who was treated for breast cancer after he had detected a lump in her breast and referred her for specialized care. Because physicians tend to volunteer just once every few weeks, patients rarely see the same
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doctor on consecutive visits. About a year and a half after their first encounter, the patient arrived “really, really late in the evening, when we were all ready to go home,” requesting a cream to soothe the dry skin on her breast. “You were my first doctor,” she said, although it was only after flipping to the very back of her now-thick medical file and seeing his own handwriting that he could confirm, with considerable embarrassment, her confident assertion. On reading her chart more carefully, Dr. Barkan was dismayed to learn that the patient had been treated for breast cancer, including the radiation that left her skin painfully dry, but that the cancer had returned and her prognosis was bleak. He also felt terrible guilt about his failure to follow up on her case.
After this second encounter, he stepped back from his clinical role to become what he called a kind of “total case manager”: supervising his former patient’s care, taking her out to a restaurant, buying toys for her small daughter. I asked how he would characterize their relationship. “What can I call this? I don’t know, compassion? If she needs a brain CAT scan at 3:00 A.M., I’ll take her. . . . Look, she’s going to die, she’s dying. She already can’t see out of one eye . . . and she’s in denial . . . and her daughter . . .” Clearly Dr. Barkan’s commitment to the Open Clinic, and particularly to this former patient and her young daughter, ran deep. Yet he had no interest in the political debates that raged at BZA about the broader implications of the clinic’s work. To him, these internal debates fell somewhere between the pedantic and the misguided. “I was at this meeting once of [BZA activists], a dinner party,” he explained,
and someone started making radical leftist statements, like “you shouldn’t give people care, that actually makes things worse, if you provide care then the state can wipe its hands of the matter.” That’s way too radical for me. I’d be very happy if there were services like that provided by the state, but they’d close down the same day. . . . That’s just not the right way to look at it. . . . you just have to do it [i.e., provide care voluntarily]. Period.
Although Dr. Barkan vaguely supported BZA’s efforts to advance unauthorized im/migrants’ right to health in the legislative and policy spheres, he expressed deep skepticism about the possibility of dramatic change. Rather than getting tangled up in such battles, he preferred to stay away from rights debates and instead pursue a humanitarian stance—to just “come in and do what I do.”
Kobi Levy: “A Different Number One Goal”—Changing Immigration Policy
Kobi Levy, the coordinator of BZA’s Project on Migrant Workers and Refugees, was drawn to BZA for different reasons from either Dr. Peled or Dr. Barkan; what attracted him was precisely the organization’s broad human rights agenda. A tall, soft-spoken man in his early thirties, Levy was among the only BZA activists I interviewed who drew a direct connection between family history—in his case, his parents’ immigration to Israel from North Africa—and a present-day commitment to migrant advocacy.
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I’m a child of an immigrant family. That’s a strong feature of my family. The transition, the very partial integration into Israeli society . . . these things are very present. Language, Arab culture—something which for a long time, even today, on one hand exists in my house, yet on the other hand there’s always an effort on my parents’ part to push it aside. . . . It’s had a very significant influence on my choices.
When I interviewed him in 2007, less than a year after he had joined BZA’s professional staff, Levy acknowledged that some board members saw his project as an ongoing distraction from BZA’s core agenda.
I’m relatively new here, but I know how things were in the past, and I can still feel it among board members . . . we’re not only interested in the rights of Palestinians in the Territories. That’s one thing. Second, when we’re talking about immigration policy, . . . there’s a certain kind of opposition among board members. Maybe it’s just something that’s not entirely clear to them.
For Levy, unlike some of the organization’s activist base, the right to health applies across the board—to Palestinians, to unauthorized im/migrants, to asylum seekers and refugees, and to other “status-less persons” (Hebrew: khasrei ma’amad; a term that came into use at BZA during his tenure as project coordinator)—and it is inextricably entwined with other human rights that are equally central to BZA’s mission. Often, he explained,
[our] demand of the establishment, or whomever, isn’t necessarily a demand for medical care but a demand to grant someone status . . . or to register someone at the Ministry of Interior, or to give a child a [government] ID card. That’s a different kind of right . . . but it directly influences the right to health. . . . Actually the right to health is just one other way to look at things . . . but it’s not all we do.
I was curious to know how this broadly construed human rights agenda in- fluenced his strategic aims. “What,” I asked, “is the goal of your project?” His response: “To effect change in Israel’s immigration policy via the right to health” (emphasis added).
Levy’s answer caught me by surprise for reasons that will become clearer in the section to come, where I analyze a turbulent moment that occurred well before he joined BZA in which this goal—changing Israeli immigration policy—was effectively written off as an idea unworthy of serious consideration. Intrigued, I asked for clarification: “So basically the number one goal supersedes the right to health?” His response: “There’s a different number one goal.”
It’s to somehow advance the idea of becoming a state that’s Jewish—which is fine, it can stay Jewish—but to become a state that has room for other kinds of people. Yes, definitely, immigration policy and the rights of immigrants: that’s where I’m trying to achieve change. Of course if I can make changes there, it’ll also have an influence on their right to health.
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Levy’s approach to the Project he coordinated and to BZA’s agenda overall, struck me as innovative and intriguing but also deeply controversial. Not only did he explicitly declare the right to health but one among many human rights on BZA’s agenda, but he also rejected the humanitarian “Hippocratic bubble” that allowed some activists to focus on immediate health concerns while skirting larger questions of right. Instead, he was attentive to how structural violence and social exclusion (although he did not use these terms) produce migrant “illegality” and associated forms of vulnerability and health risk in the first place. Finally, by ranking immigration reform above health rights, his political stance diverged from the BZA mainstream, where most staff and activists identified reliable, affordable, quality health care for unauthorized im/migrants and others lacking status—not immigration reform or national self-redefinition—as the organization’s number one goal. For Levy, immigration reform is how this ethical theory of global provenance— the notion of a right to health—ought to be translated into local-level social and political practice. How do others at BZA understand this translational task?
Human Rights, Humanitarianism, and Realpolitik: Competing Idioms of Social Justice Mobilization
MSF [Médecins Sans Frontières, or Doctors Without Borders] limits its agenda with a humanitarian sensibility, resists the responsibility of any claim to power, and offers no general platform for an alternative social order.
—Peter Redfield, 2006
According to Peter Redfield, Médecins Sans Frontières, the archetype of global medical humanitarianism, “embodies the moral insistence of a human right to health” (2005:333; emphasis added). It has developed a sophisticated “technical ap- paratus” for providing medical care in crisis situations, but the organization “almost never claims to represent a comprehensive solution” (Redfield 2005:330). Rather, MSF tends to choose the “seductive clarity of denunciation” (Redfield 2005:349) over the path of courts-based advocacy or political lobbying in the messy world of realpolitik. BZA, in contrast, is a small grassroots organization and not a major global NGO; it explicitly self-identifies as a human rights group, not a human- itarian organization; and its team is well acquainted with the nitty-gritty of legal casework and parliamentary lobbying. In certain respects, however, the institutional inclinations Redfield attributes to MSF are also characteristic of BZA. In this final section, I explore one moment in which these inclinations found clear expression: a heated intraorganizational debate convened in spring 2002 to chart a path forward for the organization’s Project on Migrant Workers. Two issues proved especially contentious during this debate, which involved five and a half hours of discus- sion spanning two meetings18: first, conflicting interpretations of the proposition that unauthorized im/migrants have a right to health, and second, disagreement about whether BZA should be in the business of influencing, or attempting to in- fluence, public policy. On both counts, and to some activists’ great dismay, the organization revealed itself to be teetering on the fence between human rights and humanitarianism.
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According to BZA Executive Director Oded Blum, the goal of this discussion was “to develop first, our pure human rights objective, and second, [our] strategy.” Eran Moyal, inaugural coordinator of the project and a veteran staff member, refined this goal: “The question now is: what can be done in the [current] Israeli political at- mosphere?” Widely viewed as a local expert, Moyal had by then successfully spear- headed a number of legal and policy campaigns leading to limited improvements in health care access for authorized migrant workers, children of transnational im/migrants and, to a certain extent, im/migrants living with HIV/AIDS. Moyal launched the discussion by presenting four possible action pathways:
1 A campaign to include all migrant workers in Israel’s nationalized health care system;
2 An enforcement campaign targeting employers, who already are legally ob- ligated to confirm that all noncitizen employees, including unauthorized mi- grants, have health coverage;
3 A campaign to ensure a limited basket of “core services” provided by either the state or the municipality; or
4 A “legalization” campaign framed as a precondition for full realization of im/migrants’ right to health.
Below I briefly discuss the first three possibilities, followed by a more detailed discussion of the final, most contentious option.
The first proposal, integrating migrant workers into Israel’s nationalized health care system, garnered support even though it was deemed a radical proposition with little chance of success. Still, several staff members preferred it to any sort of humanitarian or charity-based alternative that would, as Oded Blum put it, convey the wrong message: “we would be saying it’s charity and they don’t have a right.” The second option, an enforcement campaign targeting employers, met with out- right opposition. A handful of private insurance options already existed for “legal” workers, and most excluded preexisting conditions. Also, because employers, rather than employees, were typically named on such policies, any sign of illness or injury could leave workers vulnerable to losing both their jobs and, consequently, their legal status. Finally, activists roundly condemned the local insurance industry’s no- torious “plane ticket policy,” whereby insured individuals with serious diagnoses do not receive full treatment in Israel but instead are flown “home” regardless of the availability, affordability, or quality of care in their communities of origin.
Some supported the third option, a limited basket of state- or municipally pro- vided “core services,” suggesting it would finally hold the government accountable for ensuring a minimum level of health care to all transnational im/migrants. Al- though the proposal on the table called for only primary care, Blum predicted it would offer more. “The moment you offer primary care, you can’t impose any limits,” he argued. “You can’t refuse to deal with a cancer patient.” To my ears, this option sounded like a recycled version of the original, failed agenda of BZA’s own Open Clinic: a primary care clinic with an equally open heart but a somewhat larger purse and a Ministry of Health address.
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Is “legalization” a right to health issue?
The fourth option, “legalization” as a pathway toward full inclusion in the na- tional health care system, revealed the deepest and most significant differences of opinion among BZA activists. Several points proved especially controversial. The first hinged on Israel’s “Law of Return.” Crafted in the wake of World War II and the Shoah (Holocaust), the Law of Return inverts Nazi law by offering Israeli citizenship to anyone who might have fallen victim to the Nazis—that is, any- one with one or more Jewish grandparents and their immediate relatives. Virtually all others—transnational migrant workers, asylum seekers, Palestinian spouses of Israeli citizens, children born in Israel to members of these groups, and others who cannot demonstrate a bureaucratically legible connection to the Jewish people—are excluded. One longtime staff member, Noa Goldman, argued that the real problem lies in the exclusionary nature of Israel’s migration regime, and that the only real remedy would involve eliminating the Law of Return altogether. Only a tiny mi- nority at BZA, and an even smaller minority of the Israeli public, would likely have supported Goldman’s proposal.
Another topic of disagreement revolved around the question that eventually topped Kobi Levy’s agenda five years later: the question of whether “legalization” was a necessary precondition for the realization of unauthorized im/migrants’ right to health. A number of physicians on the executive board opposed legalization on practical grounds, ideological grounds, or both. Dr. Green, for instance, argued that growing neoliberal influences and creeping privatization had created complicated ethical dilemmas for the Israeli health care system, and for Israeli physicians, and that the needs of Israeli patients had to take ethical precedence. “I try to be very pragmatic,” he said,
There are huge forces working against these objectives, like the huge numbers of unemployed people. First, to expect things from a government that’s supposedly trying to encourage Israelis to work is very unrealistic. Second: the rights of Israeli patients. Every day I deal with situations where I have to refuse care to people without money. I don’t know if you realize it, but the situation of the Israeli taxpayer is very bad right now. The Sick Funds [nationalized HMOs] are refusing to cover such basic things as follow-up care after surgery. Covering [unauthorized migrants] would be hugely expensive.
At this point Dr. Berger, a senior board member known for not mincing words, retorted, “it would cost less than one bypass road.” The expensive, well-designed roads to which she referred are constructed in the OPT for the exclusive use of Israeli settlers and, because they are off limits to Palestinians, they are sometimes dubbed “apartheid roads” by the government’s strongest critics.
Several board members spoke in support of Dr. Green. For instance Dr. Husseini, one of the only Palestinian–Israeli members of the board, said, “we’re wasting a lot of energy, time, and maybe money looking for a law or running to courts without giving primary care, humanitarian aid, to people.” Before long, Dr. Mintz, Chairman of the Board, complained that the conversation was losing focus:
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The State of Israel, which can barely define itself, is not about to absorb another population. It’s not going to happen. Therefore I—we always get into these global discussions—we’re sort of astronauts in this department—therefore I think we should work on the humanitarian issues. Period.
Multiple lines of tension crosscut this lengthy, meandering conversation, but the deepest gulf divided board members with humanitarian inclinations from the human rights-oriented professional staff. By the end, Blum and Moyal wanted to shoot for the max and wage a rights-focused campaign that might, if successful, radically transform how migrant “illegality” is configured in Israel—essentially by eliminating it altogether. The chairman and several board members, in contrast, leaned toward a more modest agenda inspired, but not driven, by human rights principles.
This fundamental division became even clearer when Blum tried to steer the conversation toward closure. Moyal asked, “Do we start with ‘every person liv- ing here is entitled to all health rights?’” A board member, Dr. Feierstein, said, “we should start with a practical first step toward the ideology.” At that point, Dr. Mintz, drew the line:
There’s a problem with our approach. Our project is not legalization. We’re doctors. We don’t know anything about this. Let’s set limits. My number one concern is health, that all people who need health care will get it from the state.
Ultimately, then, five and a half hours of debate yielded neither clarity nor consensus about the specific content of unauthorized im/migrants’ right to health or about the optimal, or even most realistic, pathway through which this right might be realized.
Multiple factors contributed to this lack of consensus including, in particular, the inherent difficulty of translating global configurations of ethical theory into concrete, consensually agreed-on forms of social and political practice. Ostensibly, the staff and volunteers at BZA were aligned behind a common set of principles and goals enshrined in the organization’s eponymous commitment to health and human rights. Yet when activists began talking about the right to health, whether individually or in relation to broader questions of organizational mission and strat- egy, each seemed to have a different meaning in mind. Throughout the debate, no one quoted international human rights instruments or invoked moral philosophers or bioethicists. Neither did anyone draw comparisons to counterpart organizations in other countries or world regions. Moreover, everyone was acutely aware of the myriad obstacles to policy change and legal reform: a strained national budget, conservative national leadership, divisive parliamentary politics, a nationwide pre- occupation with “security,” an ongoing military occupation with devastating human consequences, an overburdened welfare state, an epidemic of compassion fatigue, and the stigmatization of “human rights” activism in Israel as politically tainted, naı̈ve, or even traitorous.
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The most striking feature of this protracted and circuitous debate was BZA activists’ complete inability or, perhaps, refusal to acknowledge the elephant in the room: the fact that a number of board members, despite their deep commitment to a health and human rights organization with a long track record and a very public profile, simply would not commit themselves to a rights-based interpretation of the right to health—that is, as a universal principle, a legal instrument, or a policy framework. Instead, board members like Dr. Green, Dr. Husseini, and Dr. Mintz adopted a distinctly humanitarian interpretation of this right—an interpretation not unlike that of MSF, which, according to Redfield, “embodies the moral insistence of a right to health.” Seen in this light (and here we see the resonance between their views and those of Drs. Peled and Barkan), health is a meta-value, a rhetorical device, and a potent symbol of a particular mode of intersubjective attention. It is an ethical discourse of global provenance that can play a valuable role when expedient; when inexpedient, however, it is to be relinquished in favor of other idioms of social justice mobilization such as humanitarianism, Hippocratic obligation, a national commitment to health as a public good, or ethical imperatives derived from collective memory or historical experience. Throughout this heated and lengthy debate, BZA’s ostensible core commitment—to the right to health—turned out to be very much a moving target.
Conclusion: Rethinking “Illegality,” Bioinequality, and the Right to Health
So do “illegal” im/migrants have a right to health? Rather than offering a straightfor- ward answer, BZA and its Open Clinic instead reveal the complexity of this question and suggest that it requires reframing along several lines. First, however objection- able or “obnoxious” (De Genova 2002:420) we may find the language of “illegal” migration and migrant “illegality,” this mode of classification emerges consistently across migration settings, and it bears powerful material consequences, especially in the health domain. As I have suggested elsewhere, migrant “illegality” demands in-depth and comparative ethnographic attention along three dimensions: as a form of juridical status, a sociopolitical condition, and a particular mode of being-in- the-world (Willen 2007c). This three-dimensional approach can help us grasp how “illegality” is locally configured, how it shapes and constrains im/migrants’ life- worlds, and how it can “reach quite literally into illegal migrants ‘inward parts’ by profoundly shaping their subjective experiences of time, space, embodiment, sociality, and self” (Willen 2007c:10).
Yet this model neglects a crucial fourth dimension: the relationship between “illegality” and what Fassin calls “bioinequality,” or the epidemiological conse- quences of exclusion from the moral community (2009). Bioinequality, Fassin sug- gests, is not a simple function of biopolitics, for Foucault’s biopolitics has little to say about the questions of morality and judgment that lead to the erection of biosocial boundaries and the unequal valuation of human suffering and human lives. Rather, these health-related inequalities hinge on a largely neglected question of great consequence: the question of “biolegitimacy,” which, for Fassin, lays the foundation for what Petryna (2002) calls “biological citizenship.”
As a medical anthropologist who has worked for over a decade with unauthorized im/migrants, I have long found the language of biological citizenship and its variants
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powerful but also troubling. A few discursive contortions may render plausible the claim that average unauthorized im/migrants possess a certain form of “citizenship” despite their (often-comprehensive) exclusion, yet such efforts have long struck me as somewhat overwrought. Fassin’s rereading of Foucault, and of Petryna, explains why. What drives unauthorized im/migrants’ social and political exclusion stems not from the realm of citizenship—that is, the realm of biopolitics and governmental practice—but, rather, from the realm of collective moral judgment, understood here in terms of biolegitimacy. In seeking causal arrows, then, we must look both at and beyond the state, for determinations of biolegitimacy are not made or enforced by states alone. Rather, they emerge in the public sphere, where social institutions, the media, public opinion, and civil society all play leading roles.
If we take Fassin’s question of biolegitimacy as starting point, then the idiomatic promiscuity of health activism on unauthorized im/migrants’ behalf—put differ- ently, certain activists’ willingness to employ idioms of social justice mobilization strategically—makes good sense. Dr. Peled, Dr. Barkan and the senior physicians on BZA’s board, it turns out, are not motivated by a fundamental commitment to the notion that unauthorized im/migrants possess a basic right to health. In fact, theirs is not really a political claim at all, but, rather, a moral claim about how the Israeli state and Israeli society ought to reckon biolegitimacy. Ideological and personal differences notwithstanding, these BZA volunteers and their colleagues are linked by their refusal to deny unauthorized im/migrants biolegitimacy or exclude them from the population of human beings whose disease, injury, pain, and suffering are deserving of attention and concern. What attracts these particular volunteers to BZA, then, is not the organization’s commitment to human rights, but instead the opportunity it offers to translate a firm if inchoate ethical impulse into concrete forms of social practice. For card-carrying human rights activists like Eran Moyal, Oded Blum, and Kobi Levy, these volunteers’ willingness to interpret the juridical notion of a right to health rhetorically—that is, to treat it only, or even primarily, as a strategically valuable symbolic statement anchored in a moral insistence on health as meta-value—is a major problem indeed. And yet it is not within staff members’ power to simply pull away from their volunteers, or their executive board, and craft a more universalist, orthodox, or internationally recognizable human rights agenda. As an organization, the notion of a human right to health is BZA’s strongest tool, and its concomitant messiness or “mushiness” is their lot.
The same applies, I contend, to us as medical anthropologists. In Pathologies of Power, Paul Farmer decried the myopia that long prevented anthropologists and physicians, among others, from perceiving or responding to health-related human rights violations. Now, unlike in 1994, no one can say that “The phrase ‘right to health’ is not a familiar one” (Leary 1994:24). Medical anthropologists are partic- ularly attuned to such violations, to their roots in structured systems of inequality and violence, and to the social suffering they produce. In fact, we tend to home in on such violations, sometimes to the neglect of other important angles or avenues of research. Yet in addressing one blind spot, we seem to have developed another; we have not maintained the “skeptical distance from the exalted claims of human rights” (Goodale 2006:32) that might help us unpack its manifold, conflicting, even contradictory meanings. Neither have we taken the right to health itself as an ethno- graphic object or critically examined how it is invoked, engaged, and promoted in
Ethical Theory as Social Practice at a Tel Aviv Open Clinic 325
real-life forms of social practice. This right, it turns out, is perpetually in motion. It is in constant dialogue, and often tension, with other forms of rights discourse and other idioms of social justice mobilization. Its interpretation and implementation are shaped by local attitudes both toward health (i.e., as a common good or a com- modity) and toward human rights (e.g., as “pro-Palestinian” or “anti-Zionist”). Furthermore, as the BZA activists introduced here clearly demonstrate, interpre- tations of the specific content and the potential for realizing this right, especially as it applies to biopolitically excluded groups like unauthorized im/migrants, often depend less on formal points of national or international law than on vernacu- lar assessments of “deservingness”—that is, on questions of morality, ethics, and biolegitimacy bearing a distinctly local cast.
As medical anthropologists, we need to pay careful attention to these local mean- ings, movements, and tensions. Certainly, it is not our role to decide which interpre- tation is most authentic or correct. Rather, our task is to capture ethnographically both the power and the limits of this increasingly popular idiom of social justice mobilization in all its phases and forms. However attractive it may be to decon- struct right to health claims as utopian, nonjusticiable, or imprecise (among other possible critiques), the “seductive clarity of denunciation” (Redfield 2005:349) is not an option, for the right to health is as indispensable to im/migrant health ac- tivists, and to medical anthropologists, as it is mushy. Even when invoked in its weakest mode, or when its potential for realization is next to nil, the notion of a right to health remains a powerful tool for all who reject commonsense assertions that certain people’s diseases, sufferings, and lives are less important, less valuable, or less deserving of concern, than others’.
Notes
Acknowledgments. This research was conducted with generous support from Fulbright-Hayes, Lady Davis Fellowship Trust at the Hebrew University of Jerusalem, National Science Foundation (No. 0135425), Social Science Research Council, and the Wenner Gren Foundation. Any opinions, findings, conclusions, or recommendations expressed are those of the author and do not necessarily reflect the view of funding agencies. I am deeply grateful to the staff and volunteers at “BZA” for allowing me to become so intimately, and critically, engaged with their work. Thanks are also due to Peter Brown, Heide Castañeda, Svea Closser, Erin Finley, Dani Filc, Mark Luborsky, Anat Rosenthal, Anahı́ Viladrich, Carol Kleiner Willen, Sebastian Wogenstein, and four anonymous MAQ reviewers for their generous and constructive feedback on earlier drafts.
1. Pseudonym. 2. Two notes on terminology are in order. First, rather than eschewing the
language of “illegal” migration and migrant “illegality,” I join a growing group of scholars who insist on treating “illegality” as an object of analysis in itself (Coutin 2003; De Genova 2002; De Genova and Peutz 2010; Willen 2007c; see also Willen et al. this issue). For this reason, I retain the term but keep it in quotes. Second, I use the terms im/migrants and im/migration to indicate that the boundary
326 Medical Anthropology Quarterly
between migration and migrants, on one hand, and immigration and immigrants, on the other, is both porous and shifting.
3. For example, Gross 2007; Ruger 2006; Toebes 1999; Yamin 1996. 4. For example, Cole 2009; Dwyer 2004; Sen 2008. 5. For example, Gruskin et al. 2005; Hunt 2007; Hunt and Backman 2008;
Mann et al. 1994. 6. For example, Lancet 2007a, 2007b, 2008a, 2008b. 7. For example, Baer et al. 2003; Biehl 2007; Biehl et al. 2009; Farmer 2005,
2008; Kim et al. 2000; Shell-Duncan 2008. 8. Scholarly idioms of social justice mobilization include, for instance, social
medicine, social epidemiology (Yamin and Irwin 2010), and, arguably, public health itself (Krieger and Birn 1998).
9. See, for instance, Fassin 2008, 2009; Feldman and Ticktin 2010; Redfield 2005, 2006; Ticktin 2006; and part 7 of Good et al. (2010).
10. For example, Barlow 1999; Godlee 2009; Jadad and O’Grady 2008. 11. For an overview of this literature, see the Working Bibliography at the
blog “AccessDenied: A Conversation on Unauthorized Im/migration and Health”: http://accessdeniedblog.wordpress.com/working-bibliography/.
12. Some philosophers and ethicists, for instance, contend that questions about unauthorized im/migrants’ right to health hinge on the relationship among rights, duties, and priorities (Dwyer 2004). Others perceive a need to balance an ethics of rights and justice, on the one hand, with an ethics of care and responsibility, on the other hand (Benhabib 1992; see Gross 2007:329–330). For political sociologists interested in health policy, human rights logic interacts with other logics (e.g., citizenship, the labor market, public health, and cost containment) interacting within three different spheres (state, market, and civil society; Filc and Davidovitch 2007).
13. When the study began in 2000, these were two of the largest and most in- stitutionally well-organized communities of undocumented im/migrants in Israel (South Americans were the third). Filipinos and West Africans had reached Israel via substantially different migration pathways. Whereas nearly all West Africans ar- rived via the “tourist loophole” (Willen 2003) in Israel’s otherwise strict migration regime and overstayed tourist visas, most Filipinos living “illegally” in Israel were legally recruited in the Philippines and later lost their authorization status. Filipino migrants came from multiple areas of the Philippines. West Africans came primarily from Ghana (from the Asante, Fante, Ewe, and Ga ethnic groups) and Nigeria (pri- marily Igbo, Yoruba, and to a lesser extent Bini). Despite the linguistic and cultural variation within the Filipino and West African communities, each functioned in key ways as a single community, largely as a result of their shared Christian faith and, for the West Africans, their common use of English as a lingua franca.
14. All activists are identified using pseudonyms. 15. An unpublished study conducted by the clinic’s medical director using a ran-
dom sample of patient files (n = 92) found the most common diagnoses to involve orthopedic problems (24 percent) followed by gynecological concerns (14 percent), infection (13 percent), dermatological conditions (12 percent), digestive problems (7 percent), heart disease (4 percent), hypertension (3 percent), neurological prob- lems (2 percent), lung disease (1 percent), and sexually transmitted infection (1 percent). The remaining 19 percent were classified as “other.”
Ethical Theory as Social Practice at a Tel Aviv Open Clinic 327
16. Ynet, “MK Ben-Ari: Eradicate Treacherous Leftists,” January 5, 2011, accessed July 3, 2011, at http://www.ynetnews.com/articles/0,7340,L-4009642, 00.html.
17. For an overview of transnational migration to Israel since the mid-1990s, see Willen 2007b.
18. These included a three-hour staff meeting and a two-and-a-half hour executive board meeting held two days later, both of which I attended and audio-recorded in addition to taking copious notes.
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Excluded and Frozen Out: Unauthorised Immigrants’ (Non)Access to Care after US Health Care Reform Helen B. Marrow and Tiffany D. Joseph
Though the Affordable Care Act (ACA) of 2010 extends public and private insurance to 32 million individuals in the USA, it expressly excludes unauthorised adult immigrants from participating in the federally-subsidised state health exchanges and the Medicaid expansion. In this article, we show that the ACA has deepened the ‘brightness’ of unauthorised immigrants’ symbolic and social exclusion within the US health care system via a significant boundary expansion for US citizens and long-term legal immigrants that has no parallel for unauthorised immigrants. As an alternative model, we highlight two subnational jurisdictions—one city/county (San Francisco) and one state (Massachusetts)—to show how they have played more promising roles to reframe and unfreeze this ‘frozen-out’ population. While we demonstrate commonalities in how San Francisco and Massachusetts have successfully ‘blurred’ unauthorised immigrants’ symbolic exclusion and reduced their barriers to health care at the subnational level, we also highlight their mutual limitations, which signal an ongoing need for federal inclusion currently out of sight. Our findings speak to contemporary debates about whether immigrant incorporation is best achieved at the supranational, national or subnational levels.
Keywords: Immigration; Unauthorised; Immigration Policy; Health Policy; ACA
Introduction
The 2010 Patient Protection and Affordable Care Act (ACA and colloquially known as ‘Obamacare’) is ‘arguably the most sweeping overhaul of the nation’s [U.S.] health insurance system ever attempted’ (Rosenbaum 2012, 67). Phased in gradually from 2010 to 2019 with the most significant provisions implemented in 2014, the ACA’s
Helen B. Marrow is an Assistant Professor, Departments of Sociology and Latin American Studies, Tufts University, 112 Eaton Hall, 5 The Green, Medford, MA 02155, USA. Tiffany D. Joseph is an Assistant Professor, Department of Sociology, State University of New York at Stony Brook, 100 Nicolls Road, Stony Brook, NY 11794-4356, USA. Correspondence to: Helen B. Marrow, Departments of Sociology and Latin American Studies, Tufts University, 112 Eaton Hall, 5 The Green, Medford, MA 02155, USA. E-mail: [email protected]
© 2015 Taylor & Francis
Journal of Ethnic and Migration Studies, 2015 Vol. 41, No. 14, 2253–2273, http://dx.doi.org/10.1080/1369183X.2015.1051465
objective is to promote greater health care equity by reducing the number of uninsured Americans, making insurance more affordable and improving access to care (Ku 2010; Hall and Rosenbaum 2012; Kaiser Commission 2013). To meet this objective, the legislation expanded the federal Medicaid programme that offers subsidised health insurance and created health insurance exchange marketplaces1
where moderate-income individuals can purchase private insurance on their own or with federally subsidised tax credits (Rosenbaum 2012).
However, not all individuals residing in the USA will benefit from the ACA, as some immigrants, particularly the unauthorised, are excluded from the policy. In this article, we employ the sociological literature on boundaries to argue that the ACA further institutionalises the hostile political context towards immigrants that has been developing since the mid-twentieth century. By expanding health coverage to many previously uninsured US citizens and long-term legal immigrants, the ACA has generated a theoretically important boundary shift that produces an even stronger and clearer separation of unauthorised immigrants from the rest of the morally ‘deserving’ US body politic in the health care domain (Alba 2005; Willen 2012).
We first provide an overview of the ACA, briefly outlining the policy and how citizenship status influences individuals’ eligibility for insurance. Next, we delve into the sociological literature on boundaries to show how the ACA expands and further institutionalises the symbolic and social boundaries that have been increasingly drawn around unauthorised immigrants. Third, we discuss an alternative strategy for tempering—or ‘blurring’, denoted by sociologist Richard Alba (2005)—unauthorised immigrants’ exclusion via subnational ‘near-universal’ access programmes in San Francisco and Massachusetts that include unauthorised immigrants. We highlight how both jurisdictions have reduced unauthorised immigrants’ symbolic and social barriers to health care, but remain limited given unauthorised immigrants’ federal exclusion. We conclude by addressing contemporary debates about whether immigrant incorporation is best achieved at the supranational, national or subna- tional levels.
Overview of ACA Exclusions for Unauthorised Immigrants
The ACA marks a notable shift in the US paradigm for medical insurance, moving from a model rooted in welfare-based traditions that once excluded many groups deemed unworthy for financial aid (i.e., childless adults) towards a new, broader ‘national paradigm of near-universal coverage’ (Ku 2010, 1176). If fully implemented, approximately 32 million adults and children—many low-income, medically under- served and previously uninsured—could receive insurance by 2019, increasing the national coverage rate to 83–94% (Hall and Rosenbaum 2012). As of 1 May 2014, an estimated 20 million Americans had already gained coverage under ACA provisions, and the national uninsurance rate may have fallen to 13.4%, with further gains anticipated (Blumenthal and Collins 2014, 6).
H.B. Marrow & T.D. Joseph2254
Nonetheless, the ACA does not provide universal coverage. Individuals newly eligible for the Medicaid expansion will receive fewer services than those already eligible for Medicaid (Ku 2010). Individuals covered via the health exchanges still will not receive services (e.g., vision and dental care) that are not considered ‘essential health benefits’. More importantly, an estimated 23 million people—about 8% of the nonelderly population—could remain uninsured due to being income-ineligible for subsidised coverage, encountering enrollment barriers, or experiencing lapses in eligibility and coverage (Hall and Rosenbaum 2012). Still others will be unauthorised immigrants, who comprise 3% of the total US population and are the only group explicitly excluded from the ACA (Capps and Fix 2013). Unauthorised immigrants cannot participate in the federally subsidised health exchanges nor the Medicaid expansion, even as they remain ineligible for regular Medicaid, to which their access has been denied since the 1970s (Schwartz and Artiga 2007; Buettgens and Hall 2011; Fox 2009, 2013; Capps et al. 2013; Daniels and Ladin 2014).2 Unlike US citizens and most legal immigrants, they cannot use their own money to purchase private insurance via the exchanges (Patel and McDonough 2010; Blumberg and Clemans- Cope 2012; Long, Stockley, and Dahlen 2012).
The situation is similarly harsh for nonimmigrants—the official terminology for students, visitors and temporary guest workers— who are legally present but not legal permanent residents (LPRs). They are also ineligible for ACA benefits.3
Similarly, recently arrived LPRs are ineligible for most federal benefit programmes, including public health insurance, due to a five-year residency requirement enacted under 1996 national welfare and immigration reforms (Fox 2009, 2013; Viladrich 2012; Capps and Fix 2013). Thus, most immigrants face greater barriers to insurance coverage and health care than US citizens and long-term LPRs (Ortega et al. 2007; Vargas-Bustamante et al. 2012). If they do not have coverage through a spouse, parent or employer, their only options are to pay for services out-of-pocket or self-medicate (Menjívar 2002; Lee, Kearns, and Friesen 2010; Chavez 2012; Joseph 2013). The option of last resort is to rely on limited and ‘categorically unequal’ services at the nation’s stressed safety-net hospitals and clinics, which immigrants are more likely than US citizens to use (Light 2012; Portes, Fernández- Kelly, and Light 2012).
As many immigrants are ineligible for ACA provisions, this population will likely remain uninsured (Zuckerman, Waidman, and Lawton 2011; Capps and Fix 2013). Since approximately 71% of unauthorised adults lacked health insurance in 2011, representing 16% of total uninsured adults nationwide (Capps et al. 2013), the significance of the ACA’s institutionalised exclusions cannot be underestimated. Some estimate that this population could constitute a full one-third of the remaining 23 million uninsured by 2019 (Hall and Rosenbaum 2012; Mickey 2012),4 although their proportion may be lower if new unauthorised migration continues to decline (Zuckerman, Waidman, and Lawton 2011).
Journal of Ethnic and Migration Studies 2255
Symbolic and Social Boundaries: Excluding the Unauthorised from US Society and Health Care
Academic interest in the concept of boundaries has increased in recent decades, with scholars examining how boundaries are (re)created, institutionalised, crossed, maintained and dismantled at various levels (e.g., social and structural) and in various domains (e.g., class inequality and professions). Lamont and Molnár (2002) argue that the concept of boundaries is theoretically powerful because it ‘captures a fundamental social process, that of relationality’ between two or more groups, usually conceived of as ‘us’ versus ‘them’ (169, emphasis added).
Critical in this scholarship is the distinction between symbolic boundaries— distinctions social actors use to categorise objects, people and practices—and social boundaries—‘objectified forms of social differences manifested in unequal access to and unequal distribution of resources (material and nonmaterial) and social opportunities’ (Lamont and Molnár 2002, 168). According to Lamont and Molnár, symbolic boundaries are an essential medium through which people acquire status and monopolise resources over groups they perceive and classify as separate and dissimilar. If and when symbolic boundaries become widely agreed upon, they can be institutionalised as social boundaries, demarcating identifiable patterns of social exclusion. Often, symbolic boundaries enforce, maintain or rationalise social boundaries, becoming so salient that they sometimes replace social boundaries.
Lamont and Molnár advocate three potential avenues in the research on boundaries, which are relevant to our analysis of unauthorised immigrants in the American health care system. First, they argue more attention could be paid to the interplay between symbolic and social boundaries by examining variation in the properties of boundaries such as their permeability, salience, durability and visibility. Second, they argue more attention could be focused on the mechanisms associated with boundary activation, maintenance, transposition, bridging, crossing and dissolution. Finally, they argue that more attention could be paid to cultural membership, or, how social actors construct and classify groups as similar or different, by what metrics they do so, and how this shapes their relative understanding of their responsibilities towards their own versus other groups.
Sociologist Andreas Wimmer (2008, 2013) has filled some of these gaps through his study of ethnic boundary making. He argues that institutional structures, the distribution of power and political dynamics may yield varying degrees of social closure, hierarchies and inequality that influence the construction of boundaries between different ethnic groups in diverse societies. Wimmer (2008) suggests there are five strategies through which ethnic boundary making occurs: (i) boundary expansion—new people are included in a group from which they were previously excluded; (ii) boundary contraction—some of those previously included in a group are ejected; (iii) boundary hierarchy transformation—the hierarchy of ethnic categories is rearranged; (iv) boundary crossing—an individual changes his/her categorical
H.B. Marrow & T.D. Joseph2256
membership; and (v) boundary blurring—an individual emphasises other social characteristics less important to the social boundary in question.5
We argue that although the symbolic and social boundaries excluding unauthorised immigrants in the US health care system have been salient and visible for the past half century, they have become ‘brighter’ since passage of the ACA. Applying Wimmer’s typologies, this ‘brightening’ has happened because an important boundary expansion has occurred for many citizens and long-term legal immigrants—including many non- elderly, racial minority and poor Americans—who previously did not have access to affordable insurance. Through this expansion, what Alba (2005) defines as a boundary shift is occurring such that a boundary has been ‘relocated’ (23), as former outsiders are becoming insiders. The unauthorised will actually lose some of their historical access to coverage and care under the ACA. We briefly overview both trends before discussing our two subnational case studies.
Intensifying Undeservingness in US Society and Health Care
The unauthorised population was first created in 1882 with passage of the Chinese Exclusion Act, and grew after 1924 when the USA enacted numerical restrictions on immigration, established a land Border Patrol and made ‘entry without inspection’ sufficient grounds for deportation (Ngai 2004). The social construction of an ‘illegal’ category was further consolidated in 1965–1968 and 1976 when the USA terminated the Bracero agricultural guest worker programme with Mexico while also imposing legal immigration limits on sending countries from the Western hemisphere. Consequently, new arrivals, particularly from Mexico, have increasingly had to enter as unauthorised immigrants (Massey, Durand, and Malone 2002; Ngai 2004). Current levels of unauthorised immigration have decreased amid a slackening American economy, increased immigration law enforcement and expansion of new temporary guest worker visa programmes since the mid-2000s. For the 11 million unauthorised immigrants already in the USA, lack of legal status has become an important axis of social stratification, institutionalised both socially in restrictive immigration policy and rising levels of enforcement (Massey and Sánchez 2010) and symbolically in public opinion. Recent studies show that Americans’ views of unauthorised immigrants are consistently more negative and punitive than those of legal immigrants (Kohut et al. 2006; Lee and Fiske 2006).
The dominant vision of unauthorised immigrants as illegal, immoral and undeserving of membership in the national body politic often ‘brightly’ divides them from more deserving legal immigrants (Yukich 2013). Sociologist Hana Brown has identified a prominent ‘legality’ collective action frame through which anti- Hispanic stereotypes rely solely on legal status categories as cultural markers of worth, ‘demonizing illegal immigrants but espousing the virtues of legal immigrants’ (2013, 293). When mobilised, this frame has significant discursive, organisational and electoral consequences for policy outcomes—namely through claims-making possib- ilities and cross-racial organising by authorised non-citizens—coupled with
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responsiveness among politicians to ‘the emerging consensus in favour of legal immigrants’ but the simultaneous scapegoating of illegal immigrants (309–310).
This growing symbolic and social exclusion is mirrored within the ‘decidedly hostile’ federal institutional arena of health care (Newton and Adams 2009), where documentation status yields unequal access to resources. Formal restrictions by documentation status were placed on federal benefits programmes beginning in the mid-1970s (Fox 2009), yielding a boundary contraction that excluded unauthorised immigrants from social programmes to which they were previously entitled. These restrictions have since intensified. The 1996 welfare and immigration reforms codified mid-1970s policy-makers’ hard line stance towards unauthorised immigrants while introducing a five-year residency bar on recently arrived legal immigrants, enacting a boundary contraction for them, too. Since those reforms, states can only extend public benefits to ineligible unauthorised and recent legal immigrants if they use state funds and enact specific legislation providing it (Newton and Adams 2009; Viladrich 2012; Warner 2012).
Thus, unauthorised immigrants are ‘brightly’ excluded from all three realms that Willen (2012) identifies as important to the study of American health care: (i) the moral realm—strong conceptions of their undeservingness for treatment; (ii) the juridical realm—stringently curbed rights, policies and other formal entitlements to health care; and (iii) the empirical realm—radically stunted access to care largely produced by moral and juridical exclusion (Schwartz and Artiga 2007; Siddiqi, Zuberi, and Nguyen 2009; Viladrich 2012). These three realms correspond fittingly with the model used by sociologists of boundaries. Symbolic boundaries have grown stronger and more negative over time (moral realm) and have become increasingly institutionalised as disentitling social boundaries (juridical realm). Together, such changes have generated exclusion in outcomes (empirical realm). Unauthorised immigrants have so little legitimacy in prevailing American political discourse today (Brown 2013) that policy-makers working to craft and pass the ACA likely had to make strategic decisions to exclude them from its most visible provisions.6 In the controversial context of health care reform, any attempt to include them may have been accurately perceived as a danger to its supporters’ legitimacy and ultimate chances for success.
Boundary Blurring and Brightening under the ACA
Although the ACA further excludes unauthorised immigrants, the unauthorised have never been entirely excluded from access to insurance and care in the USA. They can acquire private insurance through their own or a spouse or parent’s employer or purchase private individual insurance (which is expensive, so few do). Competing ethical and political perspectives towards serving unauthorised immigrants have been incorporated into policy debates (Viladrich 2012; Daniels and Ladin, 2014), resulting in allocation of federal funds to select health care institutions for treating ‘deserving’ populations like pregnant mothers, the elderly, and children, with unauthorised immigrants included (Marrow 2012a, 2012b; Mickey 2012; Warner 2012).
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This system includes three avenues through which unauthorised immigrants have historically found access to care. First, the Emergency Medical Treatment and Labor Act (EMTALA), passed in 1986, requires hospitals receiving federal funds to stabilise emergency conditions regardless of any patient’s ability to pay (Matthew 2012; Warner 2012). Second, the Disproportionate Share Hospital (DSH) programme, also established in 1986, increased Medicaid payments to hospitals serving many Medicaid and uninsured patients, allowing them to subsidise care to Medicaid and indigent patients, including unauthorised ones (Warner 2012).7 Third, the national system of federally qualified health care centres (FQHCs), the principal source of primary health care for the nation’s officially designated ‘medically underserved populations’ (including uninsured and unauthorised ones) since the 1960s, has reduced ethno- racial disparities in health outcomes (Mickey 2012; Portes, Fernández-Kelly, and Light 2012; Searles 2012).8
Though the ACA excludes unauthorised immigrants from its insurance provisions, it increases federal funding by $22 billion over five fiscal years to FQHCs. This represents the only way unauthorised immigrants are included within and may potentially benefit from the ACA (Mickey 2012; Warner 2012). This will benefit unauthorised immigrants who live near such centres if they can navigate the bureaucratic forms, eligibility requirements and waiting lines. But currently FQHCs are only located in one-quarter of the areas designated as medically underserved and provide primary, preventive and some specialty services. Patients must go elsewhere for specialty care unavailable in FQHCs (Mickey 2012). The requirements for proving income and residency eligibility, combined with low fee-for-service costs, are de facto barriers that keep many unauthorised immigrants away (Portes, Fernández-Kelly, and Light 2012; Marrow 2012a, 2012b; Konczal and Varga 2012). For those unauthorised immigrants who do make it inside, Deeb-Sossa (2013) and López-Sanders (2013) show that gatekeeping and brokerage processes generate inequality and churning across the system, limiting progress in outcomes. Finally, some scholars worry that expanded FQHC funding may highlight unauthorised immigrants’ use of services, leading to greater public scrutiny and political backlash (Mickey 2012). Others worry that FQHCs’ rationalisation of health care delivery and new demands generated by the Medicaid expansion will weaken FQHCs’ ability to treat the unauthorised alongside newly eligible Americans (López-Sanders 2013).
In contrast, ACA policy makers assumed that DSH payments would be unnecessary as more Americans became insured. Consequently, decreases in DSH funding to safety-net hospitals are occurring as health reform is being implemented. So despite increases in funding towards preventive care in FQHCs, some scholars worry that most safety-net hospitals will have fewer resources to serve the remaining uninsured, particularly in specialty and emergency situations (Zuckerman, Waidman, and Lawton 2011; Gusmano and Thompson 2012; Capps and Fix 2013).
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Inclusive Devolution: Envisioning the Unauthorised within State and Local Body Politics
Linking these trends to the boundaries literature, we argue that the American state has sharpened the distinctions, both legal and social, between unauthorised immigrants and others, ‘brightening’ the symbolic and social exclusion of the former. The ACA is a formal juridical mechanism that further institutionalises their national- level exclusion by turning previously uninsured US citizens and long-term legal immigrants into health care ‘insiders’. This process makes unauthorised immigrants more visible among the remaining uninsured.
However, with comprehensive federal immigration reform stalled in Congress, US scholars have documented an intensification of local and state efforts at immigration policy-making (Newton and Adams 2009; Hopkins 2010; Varsanyi 2010). Even if future federal reform passes, state and local jurisdictions will play a crucial role in implementation. As Crul and Schneider (2010) argue, ‘institutional contexts’ vary widely across countries and cities, which exhibit pragmatic ways of responding to their immigrant populations and tangible influences on immigrants’ participation and belonging. In Crul and Schneider’s view, examining ‘comparative contexts of integration’—particularly how various institutions like labour markets and legal policies are arranged—is key to identifying the underlying processes, degrees and consequences of incorporation for immigrants into a nation-state or locality. Because health care qualifies as an institution within their ‘context of integration’ model, we heed their call to ‘look at the national and local “institutional arrangements” facilitating or hampering [immigrants’] participation and access, reproducing inequality’ (1259). Specifically, we draw on data from health care providers and immigrants in two subnational jurisdictions—one city/county (San Francisco) and one state (Massachusetts)—to show how both have developed institutional arrange- ments that have ‘blurred’ unauthorised immigrants’ symbolic exclusion and reduced their health care barriers. We also highlight their mutual limitations, demonstrating that both jurisdictions’ institutional arrangements remain imperfect substitutes for a more inclusive national-level one.
Data and Methods
Data come from two qualitative case studies that the authors individually conducted in San Francisco, California and Boston, Massachusetts. From May to September 2009, Marrow interviewed 36 safety-net health care providers and staff working in a large, residency-training, outpatient clinic associated with the integrated city and county of San Francisco’s public safety-net hospital, hereafter called Hospital Outpatient Clinic (HOC) (a pseudonym). HOC provides comprehensive primary- care services and select specialty services and serves a diverse patient population of low-income, uninsured and racial/ethnic minority individuals. Respondents were recruited using purposive and snowball sampling, and included a range of providers (i.e., professional physicians and non-physician staff) who provide care to
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unauthorised immigrants. Marrow also interviewed 18 safety-net providers and staff from other hospital clinics and departments, a Latino-oriented FQHC and a Latino day labourer-oriented free clinic to explore their perceptions of how unauthorised immigrants interact with HOC providers and staff.
From September 2012 to June 2013 in Boston, Joseph interviewed 31 adult Brazilian and Dominican immigrants; a range of 19 health care professionals (i.e., physicians, social workers and medical interpreters) at a multisite hospital system with a reputation for providing quality health care to minority and uninsured populations, referred to by the pseudonym Boston Health Coalition (BHC); and 20 immigrant and health organisation employees. Purposive and snowball sampling were used to obtain diversity in gender and legal status among the immigrant sample and to interview health care professionals and employees at organisations serving (primarily Latino) immigrant and minority populations.
Interviews in both case studies queried how legal status influences immigrants’ health coverage options, and how institutional and contextual factors pertaining to San Francisco’s (2007) and Massachusetts’ (2006) near-universal health care policies shape immigrants’ experiences with their respective health care systems. Interviews also explored providers and organisations’ beliefs and actions towards immigrant patients and constituencies. In both projects, interviews lasted on average 60 minutes and were conducted in English, Spanish or Brazilian Portuguese. All interviews were audio-recorded, transcribed, cleaned, coded and analysed using ATLAS.ti (SF study) and NVivo (Boston study), two qualitative analysis software programmes. To ensure anonymity, all names and identifying characteristics of individual respondents have been changed. Human subjects’ approvals were obtained from each author’s respective institution, and both authors also analysed publicly available data on federal/local immigration and health policy.
Recategorisation in San Francisco
In San Francisco, local officials have allocated substantial funds to the city’s public safety-net infrastructure and enacted measures that separate lack of legal status from the provision of public benefits, including an official ‘sanctuary’ policy and a Municipal ID ordinance.9 The city enacted Healthy San Francisco (HSF) in 2007 to provide ‘universal access’ to primary medical care at certain hospitals (only one in 2009) and FQHCs for all local resident adults ages 18–65 with incomes under 500% of the federal poverty level (FPL) who were ineligible for other forms of public coverage. Income and local residency, rather than documentation status, were the main criteria for HSF eligibility and inclusion. Participation was free for city residents with incomes under the federal poverty line. Otherwise, it was based on designated quarterly participation and point of service-fees (Katz 2008; Dow, Dube, and Colla 2009).10 By 2011, almost two thirds of the city’s uninsured were covered through HSF, the total uninsurance rate dropped to 3%, and patient satisfaction was high (Grady 2011).
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This inclusive local policy effectively ‘recategorised’ unauthorised immigrants as people located within the city’s conception of ‘we’ (Matthew 2012). Unlike the national ACA, HSF represents a boundary expansion that gives uninsured city residents, including unauthorised immigrants, greater access to care. Marrow (2012a, 2012b) found that HSF has had profoundly positive symbolic and social effects. Symbolically, it legitimates local safety-net providers’ views of unauthorised immigrants as morally deserving patients. According to clerical worker Shana, the city’s political and HOC’s institutional emphasis on ‘treating everyone, of all groups’ tempers providers’ expressions of fiscal resentment towards unauthorised immigrants through recategorising unauthorised immigrants as ‘insiders, and part of my community’ instead of as ‘those people’. In medical resident Eduardo’s words:
Voicing a view of unauthorized immigrants as ‘undeserving’ within the San Francisco safety-net is taboo. Thanks to a strong and inclusive institutional culture, while you hear those things at the margins, the general reaction would be for people to say, ‘We don’t say that kind of thing here’. I think you would be reprimanded for it and seen as someone negative.
Socially, HSF reinforces a documentation-status-blind environment, reduces the fears that unauthorised immigrants exhibit about accessing care and increases patient- provider trust. HSF’s funding structure also allows providers to effectively marshal primary-care resources for their patients without having to ask about documentation status. For nurse practitioner Sarah:
There’s just once in a while something you can’t do. And I feel lucky that I don’t really care [about documentation status]. It doesn’t, you know, for the most part it doesn’t really affect what we can do for people.
Physician Mary also agreed that providers:
Often don’t know [legal status] because we are very lucky in San Francisco in having no [legal or financial constraints placed on us] for anything we can provide on-site [at the public safety net hospital] to anyone who lacks health insurance.
These same providers noted that without inclusive HSF policy and funding that currently allows them to ‘look past’ their patients’ legal statuses, they would probably inquire about patients’ documentation status to determine what benefits they have access to. HOC providers were adamant that local policy and funding were critical for creating a safe hospital context, reassuring applicants that documentation status was only required to determine plans and payers (never for disqualification purposes), and connecting eligible patients to services in the system.
However, this recategorisation has limits. Formally, as only a ‘universal access’ model, HSF remains categorically unequal (Light 2012) to other forms of public and private health insurance in California. It also only includes primary care provided by participating health care institutions and does not cover certain specialty care services
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(i.e., dental and vision) or other ancillary ‘social support’ services (i.e., disability and hospice). Unauthorised immigrants’ access to these services lies outside the domain of San Francisco policy and continues to be delimited by restrictive federal and state polices. When moving across junctures between primary, specialty and ancillary care, HOC providers reported that the resources they can offer to unauthorised patients get restricted. Subsequently, their ability to ‘ignore’ patients’ illegal status in their caregiving disappears. Physician Elena is:
Able to provide [a] standard of care for the majority of my patients who are chronically ill. For the small group of patients who do become sicker than that level, severely enough ill, or have the wrong thing, lack of legal status suddenly matters because they [doctors] just can’t get care and it becomes really hard [to get them care], depending on what the service is.
Providers like Elena see clear patterns of blocked access swiftly emerge for unauthorised patients as they move into the realms of specialty care and ancillary services not covered by federal, state or local monies. In these situations, HOC providers report going into advocacy mode to link their unauthorised patients to care. But as medical resident Laura explained, their success is ‘voluntary and discretionary’ rather than systemic. Many times their hands are simply tied.
Informally, providers also recounted seeing complex documentation steps exclude some unauthorised immigrants from accessing the care to which they are theoret- ically entitled. HSF requires proof of local San Francisco residency, proof of low income and denial from Medi-Cal, the state’s Medicaid programme. The first two are often difficult for the unauthorised to provide and understand if they speak a different language (Portes, Fernández-Kelly, and Light 2012); the latter creates fear and confusion. In registered nurse Catarina’s words:
Even if Healthy San Francisco and [this hospital] may not do anything with that information, if you’re undocumented and you know that there’s a possibility you could get deported, there is wariness to submit all this documentation or have to come up with it. So, it may not be meant as a barrier but it definitely is serving as one.
Recategorisation in Massachusetts
While HSF is a city-/county-level programme, Massachusetts provides a state-level example of inclusive health reform. In 2006, Massachusetts became the first US state to enact near-universal health reform by requiring all eligible state residents to have insurance coverage, expanding Medicaid coverage for eligible low-income residents and establishing a statewide health exchange for moderate-income residents (Long, Stockley, and Dahlen 2012; Long, Stockley, and Nordahl 2013). The reform was lauded, becoming the model for the 2010 national ACA (Patel and McDonough 2010; Long, Stockley, and Dahlen 2012).
Though the Massachusetts reform primarily targeted US citizens, it extended some benefits to immigrants. Unlike the ACA, it allowed income-eligible legal immigrants
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with less than five years residency to qualify for the state-funded Commonwealth Care programme, which provided subsidised private insurance to moderate-income citizens and legal immigrants via the state health exchange (Joseph forthcoming).11
Furthermore, although unauthorised immigrants were ineligible for federally subsidised coverage under Massachusetts health reform (Wilson 2008), the state made an explicit decision to maintain its state-funded safety-net programme—now known as the Health Safety Net (HSN). Under HSN, remaining uninsured residents of any documentation status with incomes below 400% FPL could access health coverage and care at certain hospitals and FQHCs (Wilson 2008; Patel and McDonough 2010).12
Like HSF, the Massachusetts reform includes unauthorised immigrants within the state community through programmes like HSN, recategorising them as eligible for coverage due to their state residency despite their documentation status. As a result, health care professionals can provide care for immigrant patients without concerns about documentation status. A BHC physician named Amanda discussed how this increases immigrants’ comfort levels:
I think it's [the reform] definitely a contribution. I think that we do serve patients that don't have citizenship or legal residency here and I feel that they are connected to us and they know that they have us to care for them. And they trust us.
This is one of the reasons respondents across all stakeholder groups in the Massachusetts study felt health care was more accessible for immigrants there compared to the rest of country. Amanda also commented on how immigrants’ inclusion improves their health care access:
I feel great that we are able to provide them with so much, the preventive things that they need so that they don’t present in a much tougher situation…. I feel that having, everybody having the need to cover everybody is a good thing. Especially when we talk about populations that are at risk and might not have it. If it wasn't for something like this [reform], so I think that’s good. Obviously there is room for improvement. But I think that overall it's a good thing.
While the HSN is an inclusive programme for income-eligible unauthorised immigrants, like HSF, it is not insurance and is only offered at select health care facilities. HSN only ‘universalises access’ to primary care for state residents who remained uninsured due to their ineligibility to receive public health insurance under the state-level reform. So despite minimising unauthorised and newly arrived legal immigrants’ social and symbolic marginalisation within the realm of preventive care, Massachusetts has done so in delimited and unequal ways. Access to and quality of preventive care is still shaped hierarchically by one’s insurance type and other socioeconomic factors. Relative to state residents with private coverage, those with ‘public’ coverage (i.e. HSN, MassHealth—the state’s Medicaid programme) experi- ence greater barriers to care due to limitations on services provided through their
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plans, or lower levels of reimbursement paid to their providers (Wilson 2008; Clark et al. 2011; Joseph 2013).
Informally, Massachusetts shares with San Francisco the tendency towards bureaucratic disentitlement. Proving local/state residency and income eligibility using income tax forms, bank accounts or apartment leases is difficult in both locales. Moreover, the Massachusetts counterpart to HSF’s requirement of proof of denial from Medi-Cal is the fact that the unauthorised immigrants are automatically rejected from MassHealth prior to HSN enrollment. Elise, the supervisor of financial assistance at BHC, explained how this confuses applicants:
[MassHealth applicants receive] a 4-page letter [whose first side] starts off saying you have been denied. So every time a patient comes to us with that denial letter, we say, did you turn [it over]? Did you see your name there? [MassHealth] only sends out letters in English and Spanish and there are other [language] populations that get it.
While the back of the form states that individuals denied MassHealth coverage are eligible for HSN, programme applicants, especially those who are non-English speaking, receive this letter and assume they are ineligible. As in San Francisco, such complex documentation, language barriers and lack of knowledge about eligibility have the de facto effect of excluding some unauthorised immigrants from accessing care through this programme to which they are theoretically entitled.
Once they get HSN coverage, many unauthorised immigrants, especially if they look ‘Latino’, fear using health care services due to possible surveillance by immigration and local law enforcement. Reports of unauthorised immigrants being detained by law enforcement in transit to medical appointments have been reported in Boston and shown to decrease health care access among unauthorised immigrants and their authorised family members (Hacker et al. 2011; Joseph 2013). Adam, a Boston immigrant organisation coordinator, recounted a story about an immigrant patient whose health care providers called regarding his blood work, urging him to come to the doctor’s office immediately:
He [patient] drives 45 minutes, pulls on to Somerville Avenue which was being totally torn up and repaired, filled with Somerville cops, hanging around having coffee on their detail. They [police] could care less who’s driving by, but he sees all those police, he turns around and goes home which is the rational thing to do but it just mitigates against doing anything.
In San Francisco, several providers also reported high-profile immigration raids in 2007 and 2008, stoking unauthorised immigrants’ wariness about interacting with them as members of the ‘safe’ public safety net.
Conclusion: Whither the Great ‘Unfreeze’
Due to the actions of the American state over the last half century, distinctions have sharpened between unauthorised immigrants and others, such that in 2010 the
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symbolic and social boundaries around unauthorised immigrants in US health care were already ‘bright’. Still, they were somewhat ‘blurred’ as 32 million other Americans also lacked insurance and access to care. Since passage of the ACA in 2010, however, a critical boundary shift is underway as many US citizens and long- term legal immigrants are being ‘recategorized’ (Matthew 2012) into insurance ‘insiders’, while unauthorised immigrants remain ‘frozen out’ (Capps and Fix 2013).
In both San Francisco and Massachusetts, our research demonstrates more inclusive recategorisation of the unauthorised in health care compared to the national level. Symbolic boundaries have shifted towards recognising unauthorised immi- grants’ de facto legitimacy to be part of both locales’ civic communities (de Graauw 2012; Ridgley 2008). These symbolic boundaries have also been institutionalised into social boundaries, whereby unauthorised immigrants are afforded some coverage and access to care. Interestingly, in both places symbolic and social boundaries by income and local/state residency—that is, against people from Oakland or outside Massa- chusetts—have hardened even as those by documentation status have softened.
Nonetheless, between the two cases we see mutual limitations worthy of theoretical discussion. First, even though HSF and HSN are ostensibly ‘universal’ for all low- income residents, unauthorised immigrants have only been partially recategorised as morally worthy of care and given access to the bottom of a ‘categorically unequal’ system of coverage and access. Due to budget cuts, financial resources are limited and health care providers most stretched in this bottom stratum (Joseph 2013, forthcoming). In both systems, unauthorised immigrants remain disentitled because of financial and language barriers and bureaucratic requirements for accessing the safety net. Theoretically, both HSF and (Massachusetts’) HSN exist only as lower- bound floors through which (some) unauthorised immigrants can access their respective jurisdiction’s health care system. Policy makers and health care providers laud these policies, but also worry they compound other barriers to care for the unauthorised. Roger, a BHC physician, expressed concerns about how comprehensive health reform may eject some unauthorised immigrants from the local and national systems:
I suspect that a whole bunch of [the unauthorized] have left [the national system]. And the major leaving in our [MA] situation was the [2006] health care reform because what happened was that the Free Care pool […] the state funds to pay for people who didn’t have insurance […before 2006] healthcare reform, that included everyone – small business owners, whole mass of students, or people just out of college who didn’t have jobs, as well as [the] undocumented. So everyone was bunched. The undocumented group was bunched together with other people. With [2006 MA] health care reform and [2010 ACA] Obamacare, now naturally what it’s going to do is it pulls those people out so it makes the Free Care pool [the remaining funding to the uninsured] much smaller and more likely [to be] the undocumented, and it’s much easier to cut them off.
More importantly, both subnational jurisdictions remain ‘subservient’ to the nation within the US federalist system (de Graauw 2012, 147). The blurrier symbolic and social boundaries and the expanded access to health care for unauthorised
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immigrants we find in both locales remain embedded within a restrictive national climate, and therefore ‘place-bound and limited’ (de Graauw 2012, 147; Marrow 2012a, 2012b). Neither San Francisco nor Massachusetts can change boundaries or provide access to rights, benefits and protections that the federal government can restrict. Without comprehensive immigration reform at the national level, we agree that San Francisco and Massachusetts remain inclusive ‘alternatives’ that ‘cannot live up to their full potential’ (de Graauw 2012, 147).
We conclude that both jurisdictions’ institutional arrangements remain imperfect substitutes for a more inclusive national-level one. Contrary to the post-national membership model advanced by Soysal (1994), where discourses of universalistic personhood are hypothesised to eventually supplant national citizenship in granting legitimacy and social, civil and political rights, we still see national citizenship as critical for the incorporation of immigrants in the US health care system. Also contrary to the emerging subnational membership model being investigated by scholars who are (rightly) curious about the causes and consequences of variation in responses to immigrants at the local and institutional levels (Crul and Schneider 2010; Varsanyi 2010), we also feel that ‘citizenship practice’ retains an ‘externally exclusive dimension’ as it becomes more internally inclusive (Joppke 1999, 6). In other countries with strong national welfare states, which offer more extensive insurance coverage or health care services to a fuller range of their citizen publics, the exclusion of the unauthorised in health care has typically been even ‘brighter’ than in the USA.
Amid troubles plaguing ACA implementation—such as various states’ refusal to expand Medicaid and conservatives’ threats to repeal the law—many other US citizens and long-term legal immigrants may not fully benefit from the policy either. This is most concerning in states where large numbers of low-income and racial minority citizens could ultimately be prevented from qualifying for Medicaid. Early optimism about increased enrollment rates in the ACA’s Medicaid expansion programme is tempered by a wariness that Medicaid enrollment will diverge regionally between expansion and expansion-resistant states. Thus, the line separating citizens and legal immigrants from unauthorised immigrants may stay more ‘blurred’ in expansion-resistant states. But we stress that there remains a fundamental difference in how that exclusion is being produced. In non-expansion states, this exclusion is generated through political resistance and other implementation problems, which could be overcome within the bounds of the ACA. In contrast, the original ACA policy design separates the unauthorised from ‘deserving’ citizens and long-term immigrants nationwide.
There are two possible solutions to uniformly blur unauthorised immigrants’ exclusion at the national level. First, revising the 1996 immigration and welfare reform policies that make them ineligible for the ACA could grant them greater access. Second, comprehensive federal immigration reform could adjust their documentation status, which would also make them ACA-eligible (Capps and Fix 2013). However, increasing anti-immigrant sentiment in national discourse and
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political gridlock along party lines in the federal government makes such changes unlikely. The 2013 reform bills presented in Congress would have at best made the path towards citizenship and equal health care coverage long and winding (Fox 2013). And more recent, piecemeal executive action policies only provide temporary relief from deportation and limited privileges for certain unauthorised immigrants, excluding access to federal public health insurance programmes.13 The more likely scenario at this point is political stasis, with at best only a few small categories of unauthorised immigrants (e.g., high-achieving youth and pregnant women) deemed symbolically deserving enough to warrant inclusion within official policies. Thus, in the absence of federal immigration reform and in such a hostile context, imperfect subnational strategies such as those in San Francisco, Massachusetts and elsewhere14
may be the most practical and promising recourse.
Disclosure statement
No potential conflict of interest was reported by the authors.
Funding
This work was supported by two grants from the Robert Wood Johnson Foundation®. Special thanks to Richard Alba, Margarita Alegría, Irene Bloemraad, Lawrence Bobo, Bart Bonikowski, Heide Castañeda, Daniel Dohan, Cybelle Fox, Sylvia Guendelman, Jennifer Hochschild, Natasha Kumar Warikoo, Keren Ladin, Laura López-Sanders, Brian Rosman, Katherine Swartz and Mary Waters for mentorship and good advice, and to anonymous reviewers for feedback.
Notes
[1] Thirty-four states use the federal exchange and 16 states have created their own (Rosenbaum 2014).
[2] Unauthorised immigrants qualify for select public health and nutrition measures, such as immunisations and testing and treatment for communicable diseases. They only qualify for a limited form of ‘Emergency Medicaid’, which covers labour and delivery and other designated emergencies. They only qualify for non-emergency care in a few states or localities that use state or local funds.
[3] Income-eligible immigrants with ‘Temporary Protected Status’ and asylees and refugees are eligible for all ACA provisions their first seven years in the USA (Joseph forthcoming; NILC 2013).
[4] Uneven ACA implementation may prevent some US citizens from gaining coverage because they still deem purchasing coverage unaffordable, experience lapses in eligibility for subsidies, or live in non-ACA-compliant states (Buettgens and Hall 2011; Hall and Rosenbaum 2012; Tavernise and Gereloff 2013).
[5] We have consolidated them in this manner; see Wimmer (2008) for more. [6] An opinion poll of likely voters conducted in December 2007 uncovered ‘overwhelming
opposition’ to giving unauthorised immigrants access to Medicaid (Dionne 2008, 80). [7] While EMTALA does not prevent hospitals from billing patients for these services, federal
DSH funds (which reached $10 billion in 2009) or state funds can be used to reimburse uncollected emergency care costs. Otherwise, hospitals take the loss of treating such patients (Konczal and Varga 2012).
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[8] In 2008, more than 1,200 FQHCs operated in more than 8000 urban and rural locations and served 20 million patients (Mickey 2012; Rosenbaum 2012; López-Sanders 2013).
[9] See Marrow (2012a, 2012b) for more detail. [10] HSF was funded through direct city-county public investment (about $100 million in 2010
from the City’s General Fund), fees from patients ($5.9 million), taxes on city employers ($12.9 million), and a combination of expired and federal grants (Grady 2011).
[11] The structure of all publicly-subsidised Massachusetts programmes has changed to comply with ACA requirements (Joseph forthcoming). However, they remain available to all immigrants.
[12] The HSN is funded with revenue collected from health care facilities and insurers across the state, which is redistributed to acute hospitals and FQHCs that serve uninsured populations (Wilson 2008); a small portion comes from the state government (Joseph forthcoming). The HSN fund is smaller than it was before the reform passed since the state’s uninsured population has decreased (Wilson 2008; Patel and McDonough 2010; Hall and Rosen- baum 2012).
[13] President Obama announced the Deferred Action for Childhood Arrivals (DACA) programme in 2012, which allowed undocumented young adults brought to the USA as children to receive temporary relief from deportation. DACA recipients can receive work authorisation but do not have LPR status and cannot obtain citizenship. They are ineligible for ACA provisions unless under age 18 and low income, which makes them eligible for the Children’s Health Insurance Program (CHIP) (Wong et al. 2013).
[14] Vermont passed health reform in 2011, using state funds to insure unauthorised immigrants (Gram 2011). California has used state funds to extend Medicaid coverage to DACA-eligible youth (Brindis et al. 2014), and, as of June 2015, to all qualified unauthorised children (Megerian and Mason 2015), who are ineligible for such coverage at the federal level. One California state senator has even called for the state to allow unauthorised immigrants’ access not only to its state Medicaid programme, but also its state health exchange (May 2014). Meanwhile, several California counties are trying to expand preventive and primary care to their low-income unauthorised residents on their own (Karlamangla 2015).
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- Abstract
- Introduction
- Overview of ACA Exclusions for Unauthorised Immigrants
- Symbolic and Social Boundaries: Excluding the Unauthorised from US Society and Health Care
- Intensifying Undeservingness in U.S. Society and Health Care
- Boundary Blurring and Brightening under the ACA
- Inclusive Devolution: Envisioning the Unauthorised within State and Local Body Politics
- Data and Methods
- Recategorisation in San Francisco
- Recategorisation in Massachusetts
- Conclusion: Whither the Great 'Unfreeze'
- Disclosure statement
- Funding
- Notes
- References
,
The Politics of “Unequal Treatment” (2002)
…the IOM concluded that “although myriad sources contribute to these disparities, some evidence suggests that bias, prejudice, and stereotyping on the part of healthcare providers may contribute to differences in care.”
…how could bias, prejudice, and stereotyping contribute to unequal treatment, particularly given that healthcare providers are sworn to beneficence and cannot, by law, discriminate against any patient on the basis of race, ethnicity, color, or national origin?
IOM March 2002
Persistent Disparities by Race and Ethnicity
• Two decades of clinical epidemiological studies documented unequal medical and psychiatric care and treatment by race, ethnicity, gender. Many inequalities by gender, race and ethnicity in health care are not directly explainable by SES, insurance status or “access”.
• Thus, Unequal Treatment addressed “disparities” in care rather than in health status or inequalities in care.
New Energy for Disparities Research
Especially in Mental Health
• Clinician “Bias” and the culture of practice of mental health institutions: over- hospitalization, over-medication, misinterpretation of symptoms Jonathan Metzl: Protest Psychosis
• Surgeon General’s Report: Mental Health: Culture, Race and Ethnicity (2001): “historical and present-day struggles with racism and discrimination”
• https://www.youtube.com/watch?v=hzcIdCdPuUs • 4.12 – end.
Why do healthcare disparities continue to exist?
Are organizational and institutional structures more critical than individual clinician actions? How?
David R Williams: The health impacts of racism
• https://www.rnz.co.nz/audio/player?audio_id=2018761696
• 3.32 – 9.11
Hyperdiversity: Identity, Culture and Health Background
• Health care institutions have been attending to race, ethnicity and culture for many decades
• Resurgent interest in culture and medicine as a strategy to reduce health disparities
• Past 20 years have brought burgeoning “disparities” and “culture counts” movements into the heart of medical practice and training
Problem • Not clear whether this resurgent interest in culture and medicine effectively targets the
mechanisms that produce disparities
• Culture often rendered at group level, risks reductionism and stereotyping
• Increasing immigration and demographic change further challenges the fusion of identity and culture as the boundaries between groups blur and the cultural complexity of individuals within groups is revealed
• Thus, it is important to investigate how race, culture and ethnicity are understood and utilized by clinicians today and how they are influenced by these massive demographic changes
Motivating Questions • How do clinicians and their institutions provide care for diverse patient populations?
• How do clinicians view the importance of race, ethnicity and culture?
• What are the tensions and complications that arise when clinicians take race, ethnicity and culture into account in their daily work?
• What does this tell us about contemporary race and ethnic relations?
• Are current approaches to cross cultural health care effective, or might they do more harm than good?
Theoretical Approach Clinical spaces are sites for the generation of inequality
Interpersonal Processes
• Quality of doctor-patient relationships are shaped by trust and effective communication
• Universal processes of social categorization enable clinicians to sort patients into groups that are relevant to improving the efficiency of their work using existing social categories (race/ethnicity, gender, immigration status) or emergent social categories (difficult vs. model patient)
Theoretical Approach Institutional Processes
• Availability of medical interpreters, cultural brokers, or patient navigators varies from clinic to clinic and conditions access to care for linguistic minorities
• Institutions vary in the degree to which they explicitly seek to monitor and reduce health disparities
Interpersonal and institutional processes interact and are deeply affected by the larger social environment, particularly by rapid demographic change
Theoretical Approach: Universalism vs. Particularism Spectrum of Approaches to Cross-Cultural Health Care
Less Culture More Culture
Group Culture Matters
Tools: Culturally Specific Services
Racial/ethnic matching
“No one knows this population like we do”
Group Culture Matters
Tools: Cultural Competence Training
Medical Interpreting
Cultural Brokers
“let me show you this manual we use”
Individual Culture Matters
Group Culture Does Not
Tools: Clinical Ethnography
“Just ask them what their beliefs are”
Culture Does Not Matter
Tools: Universal Approach to Care
Biomedical Model
“Just be a good clinician”
Theoretical Approach: Universalism vs. Particularism Spectrum of Approaches to Cross-Cultural Health Care
Less Culture More Culture
Group Culture Matters
Tools: Culturally Specific Services
Racial/ethnic matching
Group Culture Matters
Tools: Cultural Competence Training
Medical Interpreting
Cultural Brokers
Individual Culture Matters
Group Culture Does Not
Tools: Clinical Ethnography
Culture Does Not Matter
Tools: Universal Approach to Care
Biomedical Model
Currently Favored Policy Approach
Specific Research Questions 1. How do clinicians who work in highly diverse settings conceptualize and use culture in
their daily work?
2. How well-suited are popular group-specific approaches to culture to periods of rapid demographic change and increasingly complex patterns of diversity?
Cultural Environments of Hyperdiversity Definition
A cultural environment of hyperdiversity is a social setting that is highly diverse (in terms of race and ethnicity as well as social class, immigration status and religion), dynamic (unstable or undergoing change), and multidimensional (individuals may choose to identify with broad racial and ethnic categories or narrower categories such as country of origin, neighborhood, or sexual orientation). In these settings, racial and ethnic classification is more difficult and the link between census based racial/ethnic identities and culture is likely to be weak or broken (“shattered”).
Cultural Environments of Hyperdiversity Five Scenarios
1. Multiplicity Where the number of different racial-ethnic groups is numerous, making the organizing services based on identity impractical.
2. Ambiguity Where racial or ethnic identity of patients is not easily recognized using physical features alone.
3. Simultaneity Where patients occupy multiple racial/ethnic categories at once.
4. Fluidity Where the self-asserted racial and ethnic identity of patients is flexible or changes over time.
5. Misapplication: Where an individual patient’s cultural orientation is idiosyncratic and does not significantly resemble the cultural characteristics associated with their racial/ethnic group.
Findings: Myth vs. Reality
Cultural expectations are embedded in refugee treatment programs
● Ethnic / Tribal Identity is coherent and stable
● Aversion to “Western” medicine
● Seeking treatment for trauma experience
Shattering Culture • Health care personnel do not encounter one unified block of Bantus as there are blended
families and complex local norms that shatter the assumption of cultural unanimity.
• Contrary to what is often assumed about African refugees, Sadia embraced biomedical treatment, especially medications. She was not seeking treatment primarily because of her “old” traumas; instead she sought help to relieve her stress over her children’s acculturation and her need for connection and community.
• Culturally specific services for refugees and other disadvantaged groups, even ones that appear on the surface to be culturally homogeneous, are challenged by the diversity of individual experience. Policy-makers should be sensitive to this diversity and modify cultural-competence efforts that are targeted too broadly.
Know Your Audience
• Culture and Medicine
• Hyperdiversity
• Immigrants and Refugees are not a monolithic group
• People, Principles and Practices: https://www.youtube.com/watch?v=_Mbu8bvKb_U
• CULTURAL Humility (complete documentary). https://www.youtube.com/watch?v=SaSHLbS1V4w
Immigration and Health
GLBH/ANSC 148. Class 7
Do Unauthorized Migrants Have a Right to Health?
• 150,000 migrants with no access for formal health care system in Israel due to their unauthorized status
• Suffered from “bio-inequality” due to their social exclusion, access to lowest status jobs with poor working conditions, and chronic stress due to perpetual threats of deportation
• Migrants had no “bio-legitimacy” in that they were neglected by the state due to their unauthorized status
• Bio-legitimacy:
• To be categorically excluded from the broader moral community of the nation such that you do not “deserve” the rights extended to citizens or authorized residents
Limited access to healthcare is compounded by the broader difficulties of living at the margins of society
Health inequality is thus connected to broader social inequality that migrants experience
Palestinians' citizens of Israel and refugees in occupied territories experience different forms of bio-legitimacy than do unauthorized labor migrants
“Dr. Peled was drawn to BZA because of its work in the OPT, she explained, and she “had never thought about ‘illegal’ foreign workers as a population needing help. Why do they deserve this? Palestinians, prisoners I understand—but why foreign workers? They choose to come here, right? My time is limited,” she continued defensively. “I’m not sure this is worth it.””
Refugee Anarchism in Exarchia Greece
• Bio-legitimacy denied to Middle Eastern and African refugees in Greece
• Vehement discrimination and exclusion of refugee population leads to segregation into isolated slums
• In vacuum of state support myriad forms of resistance, resilience, and maladaptive coping arise
Migrant Right to Health in the United States
• Similar system of tiered rights exist for migrants in the United States
• Subsidies for health insurance under the Affordable Care Act are not available to unauthorized migrants in the United States, but they are for certain classes of Refugees, Asylees, and Vulnerable Populations
• Emergency Medical Treatment and Labor Act (EMTALA) enacted in 1986 only guarantees access to emergency medical treatment for all regardless of citizenship or immigration status
• Unauthorized migrants view health institutions as potential arms of the state and may avoid seeking needed treatment in order to protect themselves from deportation
• Prop 187 in California denied wide range of social services to unauthorized migrants in the 1990’s
Migrant Right to Health in the United States
• Marrow and Joseph: Excluded and Frozen Out
• Affordable Care Act expanded health insurance to millions of Americans but specifically excluded immigrants without authorization
• This exclusion reflects and strengthens distinctions of moral deservingness between individuals legally present in the country and those that are not
• Subnational political districts have tried to blur this moral distinction and find ways to extend care to unauthorized migrants — however, they are often thwarted by Federal law
San Francisco: City funded “universal” health clinic provide primary care without need to verify immigration status or ensure ability to pay
Massachusetts: State “Health Safety Net” program enables access to care at FQHC’s for all low-income residents regardless of immigration status
Getting Care at FQHC’s
Access to care varies greatly by state
Massachusetts one of the most generous states for immigrants seeking health care services, yet access is not robust.
Confusing and contradictory rules, variation by facility in how much energy is spent to find coverage for immigrant patients
Providers avoid inquiring about immigration status
Payment is offered via “sliding fee” system that makes care affordable
Immigration Status Controls Eligibility
• Qualified Immigrants in MA receive same benefits as citizens
• Legal Permanent Resident (LPR) for 5+ Years
• LPR for less than 5 years, but resident in the U.S. since 1996.
• Refugee or Asylee status
• Victim of human trafficking
• Victim of domestic violence
• U.S. Military member or family of service member
• Some immigrants from certain countries such as Haiti, Cuba, others, with automatically considered Qualified Immigrants
• Special Status / PRUCOL in MA receive limited version of benefits
• – Permanently Residing Under Color Of Law
• Under stay of deportation for humanitarian reasons
• DREAM Act eligible youth under deferred action order
• Applicants for Refugee or Asylee Status
• Continuous residence in U.S. since 1972
• Applicants for Permanent Legal Resident Status
Immigration Status Controls Eligibility
• People Living in Massachusetts without immigration papers may be able to get public health services
• Mass Health Limited is for children, parents, pregnant women, disabled people, and elderly people with low incomes
• Health Safety Net is for people with low incomes
• Children’s Medical Security Plan is for children (18 or younger) whose family has a low income
• Healthy Start Program is for pregnant women with low incomes
Are Immigrants a Health Burden?
• Immigrants, and especially undocumented immigrants, spend less on healthcare than other groups of Americans
• Immigrants contribute more into the system (Medicare) than they take out
• People with health insurance and a usual source of care require less care over time
• May be more economical to include immigrants in new health reform programs rather than pay more to reimburse hospitals for uncompensated care
• If these facts are generally true, why is the perception so strong that immigrants are such a burden to the health care system?
Immigrant Health Care Experiences
• Unauthorized immigrants have a difficult time accessing care due to the complexity of rules that govern access
• Cultural-linguistic barriers
• Fear
• Difficulty navigating the process of care from the inside
Health for all, including refugees and migrants
• https://www.youtube.com/watch?v=EfNt-hVPtFU
• How can Global Health provide care in these “Zones of Abandonment?”
• What are some of the consequences of the health disparities experienced by migrant populations?
• How can we address the lack of bio-legitimacy in the world?

