This article is part of the following series: Chronic living
Life has always been difficult, Maria del Rosario told me, but she coped. That was before all the sickness. When her mother’s kidneys began to fail, she felt traumatised, utterly overwhelmed. No matter what she or anyone else did to help, it was no good. Their lives simply fell apart.[i]
Maria, a single mother of two, lived in Balcones del Sol, a poor barrio on the outskirts of Guadalajara. Despite the allure of its name, Balcones del Sol is a makeshift community, characterised by precarious living, sub-standard housing, violence and crime. It is multiply deprived in every way imaginable.
Lourdes, Maria’s mother, was diabetic. Not long before I met her, she was rushed to the emergency room, fatigued and nauseous. Her kidney functioning was deteriorating. She would eventually need a transplant, but urgently needed dialysis. Her best, indeed her only course of action, was to have this treatment at home.
Failing kidneys in Mexico are met head-on by failing health and welfare systems (Garcia-Garcia and Chavez-Iniguez 2018). The country has one of the highest death rates from Chronic Kidney Disease (CKD) in the world (Valdez-Ortiz et al. 2018). The vast majority of those who suffer from the condition are, like Lourdes poor, uninsured and excluded from the country’s formal systems of protection and entitlement. Uninsured patients constitute over half of the country’s population, a large proportion of whom also have diabetes. It is, however, kidney failure, rather than diabetes, which exerts a catastrophic toll on living.
Maria’s family – her parents and siblings – belong to Mexico’s growing precariat. They work, for the most part, as unskilled labourers, construction workers and domestic cleaners, supplementing meagre incomes with money they make as street musicians. They have few social protections, not least for their health. In Mexico, entitlements to healthcare are highly differentiated: administered via a complex social welfare system, contingent on labour-market position and distributed across a segmented and hybridised system of care. This means that Mexican workers, depending on which sector of the economy they work in (e.g., the formal or private sector, nationalised companies; civil and public sector), are covered by different social insurance arrangements which provide access to different healthcare systems, hospitals and clinics. Movement between these systems is somewhat fluid, as people gain or lose employment.
Maria’s family had few entitlements beyond what was provided by the clinics and hospitals of the Secretaria de Salud (the Ministry of Health). This ‘safety net’ offered a subsidised, though limited, package of services and was reliant on out-of-pocket expenses. Care for diabetes was provided for, but CKD was not. CKD patients had little choice but to navigate poorly signposted treatment options across a complex range of public and private providers. They had to create their own idiosyncratic regimes of renal care (Kierans 2019). For Maria’s family, this not only meant identifying and sourcing care but paying for all associated treatments: modes of dialysis (in-clinic or at home); organ transplantation and linked protocols, hospitalisations and medications, as well as invisible ancillary costs – biopsy needles, surgical stitching, disinfectant, dialysis supplies (see below), routine check-ups and tests and so on. The costs were high in every sense – moral, social and economic. Accessing treatment necessitated protracted negotiations with medical staff, hospital social workers and welfare bureaucrats. These relationships, once built up, were used to leverage financial support from charities, philanthropic associations, local businesses and politicians, in addition to family, friends and wider social networks. Lourdes and her family had to decipher and steer a course of action through a labyrinthine and contingent network of hospitals, laboratories, pharmacies, corporate medical suppliers and black-market medications dealers – not once or on occasion, but perpetually.
The day I met Maria she was at her mother’s house. Her father was working to replace the mud floor in their bedroom with tiles, as well as install an indoor bathroom, so we sat outside on their small patio to talk. His labours were in response to requirements for establishing CAPD (Continuous Ambulatory Peritoneal Dialysis) or home dialysis provision. I had come to see how they were getting along. Maria, as Lourdes’ principle carer, was obliged to take a CAPD training programme to ensure the treatment regimen could be appropriately administered in the home. Creating a dedicated cuarto de diálisis (dialysis room) in the parents’ bedroom was no easy task. Strict standards of hygiene were required to minimise infections, a common problem for dialysis patients. Apart from the new tiled floor, the bedroom walls had to be re-plastered and painted. The room was to be equipped with a bed, a table with a clear surface (ideally a stainless-steel surgical table), a washbasin, a 12-liter jug and a water dispenser, a medical stand with a hook or minimally, a large nail on the wall from which to hang the dialysate bags, a microwave oven to warm up the dialysate solution and a scale to weigh the drainage bags at the end of the procedure. Additionally, they would need: three scrub gowns; three scrub hats; one pack of disposable medical face masks; one plastic bowl (50 cm diameter); one thermometer; one re-usable soft brush (to wash their hands); one pack of regular or microfiber cloths; one pair of plastic clamps; one bottle of povidone-iodine; one bottle of hydrogen peroxide; one bottle of sodium hypochlorite disinfectant. Once in place, this ‘para-clinical space’ (Padilla-Altamira 2017) had to be formally approved. To do this, photographic evidence was needed as well as routine inspections.
Approximately 80% of all dialysis care in Mexico is performed in this way. Costs, which in other national settings are absorbed by the state, are outsourced to the family, to an intense and intimate moral economy of care. What is more, the organ transplant Lourdes ultimately required would, in all likelihood, be sourced in the same way. A fragmented healthcare system had made institutionalising a national deceased organ-donor programme very difficult, so the majority of organs-for- transplant were reliant on living-related modes of exchange. Kidney disease in Mexico is not only indigenised, made to fit a heavily segmentalised infrastructure, it is also ‘domesticated’ (Crowley-Matoka 2016).
Maria’s family were struggling to meet the requirements for home dialysis. The refurbishment was slow and they could not supply evidence to show the house was fit for purpose. To keep things moving forward, and in the faint hope that they would soon get there, Maria submitted photos of a bedroom in one of her aunt’s houses.
Maria completed the CAPD training program, and took its requisite exam. She failed to answer all of the questions correctly and was required to retake it. She was also expected to attend for interview, but had no money to travel to the hospital. She wanted to call the nurses to explain but didn’t have a phone number. It was hopeless. The day I met her, she still didn’t know how or if she would be approved for managing her mother’s dialysis care. Paying for Lourdes’ healthcare had drained the family’s finances. To raise money, Maria and her sister organised rifas (raffles) in the local community. The entire family sold or pawned whatever they could. Maria’s father sold his accordion and then one by one, his labouring tools. He then sold the TV and an electric piano. Selling the TV meant that they could cover some of the transportation to and from the hospital; selling the piano helped to cover their first two nephrology appointments and hospital stays. Maria’s brothers regularly pawned their instruments; they all pawned jewellery. Whenever money was urgently needed, they relied on a local money lender. Interest payments and never-ending bills plunged the family into spiralling debt while simultaneously and systematically depriving them, through the loss of their instruments and tools, of their means to work and their capacity to repay it.
These struggles – indeed, these ‘trials of strength’ (Callon and Latour 1981), are lived out at the various and unstable interfaces between forms of insecure work and forms of welfare and social protection. Securing treatment and care is, thus, highly contingent and, particularly in the context of CKD, there are no guarantees of positive outcomes, even when access to treatments has been secured.
What I want to emphasise here is the critical role of labour as it embodies the interface between entitlement and care. It is labour, I argue, which translates chronic illness (in this case, chronic kidney failure) into a form of chronic living (Manderson and Wahlberg 2020). It is labour, such as that required from families like Maria’s, which unlocks and enables regimes of renal care – and with it, the heady mix of public and private provision these regimes are generated from. Indeed, as I have argued elsewhere, these regimes, and the surplus value (as opposed to health) that is produced in their wake, are parasitic on this labour (Kierans 2017, 2019).
In invoking ideas of labour, I do so in two overlapping and mutually constitutive ways: (1) in terms of labour market position, including the social and political-economic relations which underpin insecurity and vulnerability for the majority of Mexico’s workforce; (2) in existential terms – that which necessitates human existence or bios, following Arendt (1958). Labour or toil, she argues, is distinguished from work by its never-ending character; “it creates nothing of permanence, its efforts are quickly consumed, and must therefore be perpetually renewed so as to sustain life” (Arendt 1958:7). Work, by contrast, has a very different temporal signature: it generates a world of things, things which endure, often well beyond the activity of creation.
It is in attending to the labours of families like Maria’s that the obligations and responsibilities of a state to care for its citizens are pulled into view. It is as a result of this labour and the routes and moves families must make, that we see an ambivalent form of biopolitics at play, one different than that advanced by the technologies of calculation and administration, anchored in and constituted by the ‘modern’ (Euro-American) state, and through which a state makes its populations visible (Estévez 2013; Foucault 2003 ). Mexico’s uninsured are far from visible and there are few mechanisms for them to gain visibility. The country does not have an integrated national kidney registry. Owing to systematic fragmentation, patient data is not easily shared between institutions. Gathering, storing and processing patient data is ad hoc and partial. Families like Maria’s, living at the margins of protection and entitlement easily fall outside attempts at monitoring. They are never completely legible (Scott 1998). Their lives are only partial objects of knowledge; their troubles poorly understand.
It would be too simplistic to read kidney failure(s) as outcomes of state failures – forms of structural harm (though they are that too), imposed by a state indifferent to the lives of its citizens (Das and Poole 2004; Ferguson and Gupta 2002). Doing so would serve little except to reify the determinants of poverty and its harms, to misread structural abstractions as concrete truths. It would also run the risk of superficially casting those at institutional interfaces – doctors, nurses, social workers, health ministry bureaucrats and so on, as agents of the state, complicit in the production of harm and penury, while underestimating the efforts they too make in the face of adverse circumstances. It would conflate as Akhil Gupta (2012) contends the spectacle of disciplinary power with its operations. Agents and bureaucracies of states, he explains, do not have to be callous or charged with disciplinary zeal for their work to have effect – for it to produce the kind of arbitrary and contingent outcomes we see in the Mexican welfare state. The point is that such arbitrariness is, itself, not arbitrary; rather, it is systematically produced over time. Welfare states are, thus, outcomes of particular labour market histories, ongoing political conflict and struggle (Esping-Andersen 1990). In Mexico, these histories exemplify the shifting balance of power between labour, capital, and the state. They show how the political struggles of the past mark the differences and inequalities played out in the struggles of the present. These inequalities are, in part, outcomes of an institutionalised system of brokerage between capital, labour and the state, enshrined in the post-revolutionary period of the 1930s. Lázaro Cardenas, the then Mexican president wanted to make the country’s largest labour unions the base of his party’s support, and so promoted collective bargaining agreements that included social security benefits as well as wages (Mesa-Lago 1978). As a political strategy, this would become an engine of internal stratification based on the systemic favouring of vested interests, with those already marginalised (the rural poor and indigenous, later to become the urban poor and precarious) unable to access these new systems and largely ignored in attempts to extend them. This would continue beyond the corporatist welfare state of the 1930s, intensifying its effects in the hybridised (neoliberal), model that would follow from it.
Families like Marias have thus been multiply dispossessed in all senses – classical, historical and political-economic, not only stripped of their rights to land and dependent on waged labour (Marx, (1974 ) but also through failures to ensure adequate compensation, within a market economy, for loss of earnings. This has dispossessed the poor of the means to sustain and reproduce life at its most fundamental. For those with kidney failure, life has become a metered good, payment for which threatens living, and can no longer be sustained via other forms of social reproduction. Inadequate compensation mechanisms have profound consequences in the context of a condition, where dependence on resource intensive technological medicine is the only means to live, and where attempts to access it not only threaten the survival of individuals but also those they are bound to: their families.
This cannibalisation of the social by the political-economic is, thus, far from implication free. It generates healthcare markets grounded in highly specific forms of human sacrifice, and a healthcare system which produce penury and harm. The arbitrariness, contingencies and ambivalences inherent in these arrangements are fundamental to the sites and interactions, which shape the practice of renal care and, from there, people’s highly unequal and differentiated access to it. Attention to these features are critical, not least because they challenge a view of welfare (and indeed the state) as delocalised abstractions but because they make visible the social relations upon which the work of welfare depends. They, therefore, steer us away from bipolar state-citizen relations and towards the everyday ambivalences which underlie our ways of making sense of the world and acting upon it (Ledeneva 2014). Ambivalence, in this sense is not simply a moral concern, but a methodological one too (Kierans and Bell 2017).
Chronic lives have to be understood in situ. They have to be seen as more than a produced effect of structural harm. We might consider, following Foucault, what it would mean to treat the situations and outcomes of families like Maria’s as productive in and of themselves. By paying attention to their practices; their labour, we come to understand the particular and mediated ways in which lives are put in jeopardy. By privileging labour, what we see are circumstances where individuals have to break themselves and one another continually as part of situationally creative responses to the radical contingencies of their situations. Through the informal practices of debt management, through the enforcement of new solidarities, or through the sacrifices required of extended family and networks of friends, Mexico’s uninsured put themselves to work. In the course of that work, they forge the material bases for new structures and relationships to emerge. In emphasising the ambivalent project of welfare, and by showing the ways it has become bound up with the production of penury, attempts to harness the work of labour result in ever-more injurious outcomes and a state-regulated sacrificial economy around healthcare. To conclude, I contend, we are witnessing a “remaking of the social” (Latour 2005) via a biopolitics of ambivalent care.
Ciara Kierans is Professor of Social Anthropology in the Department of Public Health, Policy and Systems at the University of Liverpool. She is a social anthropologist working at the intersections of health, environment and labour with an interest in political economy and a commitment to transdisciplinary working. Her latest project (funded by the Wellcome Trust and Arts and Humanities Research Council/Global Challenges Research Fund) focuses on the entangled social-environmental conditions of Chronic Kidney Disease of Unknown Origin in Mexico, with ethnographic focus on the Lake Chapala region, west-central Mexico. She is the author of Chronic Failures: Kidneys, Regimes of Care and the State in Mexico, (Rutgers University Press, 2019).
Arendt, Hannah. 1998 . The Human Condition. Chicago, Ill.: University of Chicago Press.
Callon, Michel and Latour, Bruno. 1981. “Unscrewing the big Leviathan: How actors macro-structure reality and how sociologists help them to do so.” In K. Knorr-Cetina and A. V. Cicourel, Advances in social theory and methodology – towards an integration of micro- and macro-sociologies (pp. 277-303). Boston: Routledge & Kegan Paul.
Crowley-Matoka, Megan. 2016. Domesticating Organ Transplant: Familial Sacrifice and National Aspiration in Mexico. Durham, N.C. and London: Duke University Press.
Das, Venna, and Deborah Poole. 2004. Anthropology in the Margins of the State.Santa Fe, N. Mex.: School of American Research Press.
Estévez, Ariadna. 2013. “The Politics of Death in Mexico: Dislocating Human Rights and Asylum Law through Hybrid Agents.” Glocalism: Journal of Culture, Politics and Innovation 1: 1–28.
Ferguson, James, and Akhil Gupta. 2002. “Spatializing States: Towards an Ethnography of Neoliberal Governmentality.” American Ethnologist29, no. 4: 981–1002.
Foucault, Michel. 2003 [1975–1976]. “Society Must be Defended.” In Lectures at the Collège de France, translated by David Macy. New York, N.Y.: Picador Press
Gupta, Akhil. 2012. Red Tape: Bureaucracy, Structural Violence and Poverty in India. Durham N.C.: Duke University Press.
Garcia-Garcia, Guillermo, and Jonathan Chavez-Iňignez. 2018. “The Tragedy of Having ESRD in Mexico.” Kidney International Reports 3, no. 5: 1027–1029.
Kierans, Ciara. 2017. “Valued Matter: Anthropological Insights on the (Bio)political Economy of Organ Exchange,” In R. Shaw (Ed) Bioethics Beyond Altruism: Donating and Transforming Human Biological Materials (pp. 265-288). Palgrave MacMillan
Kierans, Ciara and Bell Kirsten. (2017) Cultivating Ambivalence: Methodological Considerations for Anthropology, HAU Journal of Ethnographic Theory, 7 (2): 23-44.
Kierans, Ciara.(2019) Chronic Failures: Kidneys, Regimes of Care and the Mexican State New Brunswick, NJ:Rutgers University Press.
Latour, Bruno. 2005. Reassembling the Social: an Introduction to Actor-Network Theory. Oxford: Oxford University Press.
Ledeneva, Alena. 2014 “The ambivalent future of Ukraine.” Cultural Anthropology: Hot Spots (October28). https://culanth.org/fieldsights/615-the-ambivalent-future-of-ukraine.
Manderson, Lenore and Wahlberg, Ayo. 2020. Chronic Living in a Communicable World. Medical Anthropology 39(5) 428-439.
Marx, Karl. 1974 . Capital Vol. I, II, III .London: Lawrence and Wishart.
Mesa-Lago, Carmelo. 1978. Social Security in Latin America: Pressure Groups, Stratification, and Inequity. Pittsburgh, Pa.: University of Pittsburgh Press.
Padilla-Altamira, Cesar. 2017. Healthcare at the Margins: an Ethnography of Chronic Kidney Disease and Peritoneal Dialysis in Mexico. PhD thesis submitted to the University of Liverpool.
Scott, James. 1998. Seeing Like a State: How Certain Schemes to Improve the Human Condition Have Failed. New Haven, Conn.: Yale University Press.
[i] This text draws on examples and arguments presented in my recent book Chronic Failures: Kidneys, Regimes of Care and the Mexican State. New Brunswick, NJ:Rutgers University Press, with particular reference to chapter 3.
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