Ordering Subaltern Disorders: Embodiment, Biocapital and the Politics of Sickle Cell Management in India

This dissertation investigates the convergence of the nation-state, biomedicine and (bio)capital around the construction of sickle cell disease as a subaltern disorder in the caste-based society of India. It inquires how sickle cell disease that developed evolutionarily due to environmental factors—and that is also globally racialized as a “Black disease”—has come to be associated with subaltern communities, particularly the indigenous, traditionally non-Hindu Adivasi communities of India. Such a subaltern association characterizes Adivasi biologies as inherently genetically “risky” thereby providing a biopolitical mandate to the Hindu-majoritarian Indian State to carry out biomedical interventions through promissory biocapital in the name of democratic inclusion. I center on the illness narratives of subaltern sickle cell sufferers to highlight how the caste-ization of sickle cell bodies in biomedical and policy discourses, and the attendant biocapital prospecting of subaltern biologies, are nonetheless challenged by communities through their lived experiences. Viewing this association from the Adivasi standpoint—marked by continuous dispossession and displacement—illuminates not only the biopolitical governance of subaltern reproduction by the Indian State. A primary objective of my dissertation project is also to use precarity as an epistemic site for interrogating the scopes and limits of a novel biopower formed by the nexus between the State, national biomedicine and transnational biocapital. This dissertation is therefore an attempt at unearthing the subjugated knowledges of Adivasi communities regarding alternative modes of existing in the world that continuously resist the assimilatory power of race, caste and capital. In ethnographically centering narratives of suffering among doubly (socially/economically) marginalized communities, the project illuminates the contradictions between public health measures that emphasize on sickle cell management through biomedical technologies of reproductive screening and the material conditions of sickle cell sufferers struggling to access basic medical care. This dissertation therefore juxtaposes policy interventions against community articulations of reproductive freedom that posits community health work as the fulcrum for developing reproductively just ecologies. At the same time, in utilizing multi-modal and multi-sited ethnographic methods, the project also contributes towards developing decolonial and digital ethnographic methods that are attentive to the aggravated precarity of marginalized communities in a pandemic prone world.