Paper short abstract:

This short documentary features the voices of New Zealand children diagnosed with the rare metabolic disorder, MCADD, recorded during ethnographic fieldwork. The voices underpin photos taken by the children and myself, 'body maps' and graphics; none of which reveal the identity of the children.

Paper long abstract:

Scholars have critiqued both prenatal and postnatal biomedical testing and screening technologies for their social impact on families who have to live with the discovery of a genetic disorder that relegates an infant to life-long liminality on the border of pathology and health. In the case of medium-chain acyl-coA dehydrogenase deficiency (MCADD), once diagnosed the disease is easily managed with the regular intake of food and thus the relationship between the growing child's sense of agency, food and identity is linked to the disorder. The body of the child and related food practices become a contested space.

This presentation will use multiple media sources from ongoing research to examine how a researcher can create an ethnographic work inclusive of childrens' perspectives and representative of their voice. It aims to chart a path towards presenting the developing personhood of children diagnosed with MCADD; and how to visually explore the impact of these children and young people on the new "ethics of life", despite a potentially 'geneticised' identity.