Horizoning experts: rare disease, food security and rapid change

Pauline Herbst (University of Auckland, New Zealand)

Panel: Imagined and abandoned futures

Abstract: Medium-chain acyl coA dehydrogenase deficiency (MCADD), is an inborn error of metabolism that was included in New Zealand’s expanded newborn screening programme in 2006. Children lack the enzyme to metabolise fat and cannot fast for any length of time. Previous research (Herbst 2019) has shown that the social life of diagnosis is complex and multi-layered, and that times of rapid change, highlight the social determinants of how disease is framed, transform social networks of care, and invert how risk – particularly around food security – is perceived and managed. Using the frameworks of assemblages (Collier & Ong, 2005) and horizoning (Petryna) I interrogate ethnographic interviews with families during the New Zealand earthquakes, Australian wildfires, tsunami and the SARS-CoV-2 pandemic, to argue that those living with rare disease are particularly good at the work of horizoning, projecting what will happen during abrupt, sudden and potentially life threatening change. It is anticipated that this research will have applied insights into how members of society who have chronic conditions use existing adaptive frameworks in times of rapid change.