Biological Statehood: Sickle Cell Disease & Citizenship in Contemporary Nepal
This essay is the first qualitative undertaking to study sickle cell disease (SCD) in Nepal and aims to analyze how diseases have played an important role in defining state‐society relation particularly in Nepal’s Tarai. While rooting this essay in the long trajectory of the Tarai’s relationship with malaria; it simultaneously focuses on genetic blood disorders that have been known to render some form of immunity to malaria, namely SCD. In Nepal, according to recent statistics, SCD is only seen in the Tharus of the western Tarai.
Even though SCD has been subject to molecular, genetic research internationally since the 1940s, the Government of Nepal released its first policy concerning the disease in 2013. Within the past four years, SCD has been transformed from being a nameless, misdiagnosed disorder into a “new” priority for the Government of Nepal. Currently, Nepali citizens afflicted by SCD are entitled to approximately $1,000 worth of free treatment services from designated governmental hospitals. Such a practice of providing services through differentiated citizenship based on a biological condition has been termed as biological citizenship. In Nepal, the provision of biological citizenship vis‐à‐vis the Disadvantaged Citizen’s Medicine and Treatment Fund for SCD has been subsumed into the ongoing debate concerning federalism and the recognition of indigenous groups in the Tharu heartlands of the Tarai.
SCD provides a theoretical framework by which to bridge the notion of biological citizenship with that of federalism and ethnicity in contemporary Nepali politics; this interplay is what I term as “biological statehood.” Diseases in post‐monarchic Nepal also serve as content for state recognition by which to contest as well as to transform the dialectics between citizenship and statehood. Ultimately, a disease is not just constructed through increasing biomedical knowledge, but rather the social and political environment within which the disease is discovered also has profound consequences on its visibility, what can be done about it, and what it can do.
Key words: sickle cell disease, biological citizenship, federalism, Tharu, Nepal