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Paper short abstract

This presentation teases out moments where being classified under ‘chronicity’ or ‘disability’ or both mobilizes different kinds of care for thalassemia and sickle cell disease in India’s fragmented healthcare.

Paper long abstract

In 2016, inherited blood disorders- thalassemia and sickle cell disease- were included in India’s Rights of Persons with Disability (RPwD) Act, carving the path for social welfare distribution to affected patients. For policymakers and clinicians who lobbied for this inclusion, the chronicity of these diseases and their therapeutic interventions were a crucial reason to include them as disabilities. However, for grassroots activists, sickle cell’s recognition as disability held historical significance due to its disproportionate prevalence among low-caste and tribal minorities who remained neglected as opposed to thalassemia patients belonging to middle- and upper-caste (and -class) groups. This presentation teases out moments where being classified as ‘chronicity’ or ‘disability’ or both mobilizes different kinds of care for thalassemia and sickle cell disease in India’s fragmented healthcare. Drawing on policy documents and narratives of patients, clinicians and health activists, I show how ‘chronicity’ appears as a crucial term among experts to gather resources for clinical management and care, while disability gathers momentum towards collective action, claims of belonging and social benefits that concern patients, families and activists. Ultimately, I speculate if the approaching the “swirling thresholds” of chronicity and disability might highlight both tensions of social belonging as well as their simultaneity to access care for neglected diseases in India and beyond.