Reviewed Book
Managing Chronicity in Unequal States: Ethnographic Perspectives on Caring, Edited by Laura Montesi, Melania Calestani, London: University College London Press. 2021. pp. 247.
Khadija Muhaisen
California Institute of Integral Studies
Managing Chronicity complicates conventional understandings of chronicity by probing the politics of care, deservedness, and the stark inequalities that persistently mark our global society. It reveals the deficits of contemporary healthcare and welfare systems, underscoring the detrimental outcomes of the reductionist biomedical approach to chronic disease.
In their introduction, editors Melania Calestani and Laura Montesi challenge the notion of chronicity as a straightforward, enduring, and incurable state (7). The book, which features a collection of ethnographic narratives from diverse regions in both the Global North and South, delves into the prolonged and distressing human experiences associated with chronic conditions, offering a nuanced perspective that questions the widely accepted epidemiological transition model introduced by Abdul Omran in 1971. According to Omran’s model, Montesi and Calestani explain, societal progress and modernization result in decreased mortality rates and increased life expectancy, leading to a shift from infectious to degenerative diseases, viewed as an inevitable journey for all societies. While Omran’s model seems beneficial for political economies and neocolonial systems, Calestani and Montesi argue convincingly that it overlooks the complexities of health disparities and the significant role social determinants play in shaping health outcomes. By selecting these ethnographic accounts, the editors successfully call attention to the inadequacies of a model that is widely endorsed yet does not fully encapsulate the complexity and diversity of chronicity across various regions and societies.
Ten ethnographic narratives from the United Kingdom, United States, Finland, Tanzania, Mexico, India, and Canada unveil the complex intricacies of lives grappling with chronic health conditions such as alcoholism, dementia, and mental illness, among others. These accounts explore the profound questions of who gets care, what caregiving looks like, and who provides it, particularly for those living at society’s margins.
Chiara Bresciani investigates how evangelical interventions for alcoholism reveal the interconnectedness of chronic illness and care, demonstrating how perceived deservedness can shift the state from chronic illness to sustained healing. Through religious conversion, addicts have an opportunity to break free from the repetitive cycle of disease, taking an active role in their future. Bresciani’s research illustrates that conventional medical approaches, in contrast to medical anthropology, primarily emphasize the clinical dimension, often neglecting to take into account the societal, political, and historical factors that contribute to illness, its chronicity, and broader aspects of care.
Conversely, Sudarshan R. Kottai and Shubha Ranganathan’s narrative account from India illustrates how care leads to chronicity. The alarming prevalence of mental illness diagnoses among the homeless population suggests the authors, raises significant concerns, particularly within the Indian context, where the psychiatric system tends to heavily medicalize mental health and illness.
Giorgio Brocco’s account on Tanzania also exposes the inadequacy of the biomedical model that emphasizes individual health and illness. In “Assemblages of Care around Albinism,” Brocco unveils the profound entanglement of social inequalities, health, and the production of stigma, shedding light on their intricate connections and their role in shaping the overall well-being of individuals and communities.
In Devin Flaherty’s chapter, “(Un)Deservingness and Disregard,” the notion of (un)deservingness is explored beyond individuals without rights, shedding light on how even those with legal entitlement to services or care can undergo evaluations and claims of deservingness. Flaherty’s analysis complicates the conventional understanding of deservingness as a relationship influenced by diverse forms of attention. Focusing on the healthcare landscape of St. Croix, situated on the US geopolitical periphery, Flaherty reveals how undeservingness emerges through disregard, resulting in not only the denial of equitable access to care and services but also the denial of the very experience of chronicity itself.
Lilian Kennedy examines the UK judicial world that people with dementia and their carers traverse to secure state-funded care in “The ‘Hassle’ of ‘Good’ Care in Dementia.” In the pursuit of maintaining an acceptable standard of living while managing dementia, both affected individuals and their caregivers are confronted with complex, “lonely,” and “frustrating” challenges (110). The government is portrayed as an unsupportive entity, earning the reputation of a neglectful relative. Roaming the UK judicial state web is further explored in Marcos Freire de Andrade Neves’s account of navigating state support but in this case to facilitate a particular form of death in “Chronic Living in Zombieland: Care in Between Survival and Death.”
In “My Body Is My Laboratory,” Rossio Motta-Ochoa and Nelson Arruda examine the complex world of self-care among Montreal-based individuals often neglected by state support. Motta-Ochoa and Arruda show how these individuals navigate their use of psychiatric drugs in unique ways, broadening the notion of care. The authors critique Canadian harm reduction programs for neglecting broader structural forces that shape drug use and especially for not addressing critical needs like psychotherapy.
Maria LaRusso and Cesar Abadia-Barrero’s research with families caring for children with pediatric acute-onset neuropsychiatric syndrome, a disease-causing autoimmunity-triggered neurological and psychiatric symptoms, challenges the dominance of reductionist biomedicine and its diagnostic and therapeutic frameworks and explanations rooted in isolated specialties and pathophysiology.
As Calestani and Montesi suggest, the ethnographic accounts in the book prompt the question of whether it is possible to comprehend chronicity in relation to modernity without succumbing to the temptation of constructing overarching and homogenizing narratives. By raising this concern, the book invites us to critically examine the limitations of existing frameworks and question whether they can capture the nuanced complexities and diversity inherent in chronic conditions.
This book offers valuable insights that are relevant to researchers and students in the fields of medical anthropology, gerontology, public health, and social justice. It offers a robust foundation for understanding the connections among chronicity, care, and the societal factors that shape them. For example, the research featuring homeless individuals in India and Montreal challenges the disciplinary boundaries between social justice and public health. In Devin Flaherty’s chapter, the experiences of research participants on the periphery of American society demonstrate how chronicity can lead to neglect and the perception of being undeserving, thus highlighting the complex interplay between public health, gerontology, and social justice. Additionally, the analysis of care within neoliberal and bureaucratic systems reveals blurred boundaries between the private and public spheres as particularly evident in the research on the United Kingdom. The accounts in the book underscore the necessity of interdisciplinary collaboration to generate comprehensive knowledge that can inform the development of effective interventions and policies.
As I reflect on the experiences of the research participants shared in the book, I am reminded of the value of and need for wider research to transcend not only disciplinary boundaries by calling for a reevaluation of our understanding and treatment of diseases but also geographical boundaries, amplifying the struggles of more unequal states that have largely been missing from these conversations. As an Arab, I notice a distinct absence of Arab perspectives. By including voices from underrepresented communities like mine, the conversation around prevention, intervention, and treatment strategies can be significantly enriched.