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Vol 9 No 3: September issue

“Our Blood Itself Is Disabled!”: Haemoglobinopathy, Certificate Anxiety, and Contested Constitutionalism in Disability Legislation in India

August 4, 2021
August 4, 2022


On 28 December 2016, the Government of India passed a national disability act which for the first time recognised genetic blood disorders—thalassemia, sickle cell disease, and haemophilia—as disabilities, entitling affected individuals to affirmative action. While it was welcomed by patient communities, this policy decision also sowed seeds of collective anxieties regarding the assessment of the required degree of disability in affected individuals. Thirteen months later, a set of national guidelines were published that dictated the procedures for determining whether a patient meets this ‘benchmark disability’ standard, thus materialising the collective anxieties of blood disorder patient communities. Utilising ‘patchwork ethnography’ as a methodology, in this article I focus on haemoglobinopathy (thalassemia and sickle cell disease) patient communities in India to investigate the ‘certificate anxieties’ that stem from the difficulties of certifying disability percentage for those with genetic blood disorders. These anxieties arise from the tensions between a (bio)constitutional reordering of disability categories and the contestations of these categories, which are rooted in articulations of citizenship rights. I argue that such contested constitutionalisms give rise to productive tensions in State–(disabled) citizen relations that have the potential to realign institutions with citizens’ accounts of social justice.