Paper short abstract:

Thalassaemic lives as stories of becoming

Paper long abstract:

Biological difference is a hard fact with which thalassaemic individuals have to come to terms. They are forced to understand life through the distinction between the 'biological' and the 'social' and ultimately through the acknowledgement of its limitations. Their life stories of becoming human revolve around the distancing and resignifying of the 'biological'. Even more, their humanness is rediscovered on the lived interconnectedness between the 'social' and the 'biological'. Their biological natures, categorised via genetic knowledge, are sites for constant biomedical treatment and experimentation. As recipients of the hypes, trends and shifts of biological knowledge, they experience the immutability and the plasticity of the 'biological' as well as the constructed natures of 'biological truths'. At the same time, due to grounded bio-deterministic imaginings of normalcy, their social natures are reduced. I present here a 'bottom-up' philosophy of becoming which highlights the inadequacy of the bio-social distinction by way of an existential problematising of the 'human'.