Paper short abstract:

Children diagnosed with MCADD develop a sense of self within the constraints of habitus, daily behaviour radiating around food practices and preventative medical intervention shaped by the genetic diagnosis. This experiential, sensory knowledge is learned by the body in the first few years of life.

Paper long abstract:

Medium chain Acyl-CoA dehydrogenase deficiency (MCADD) is an inborn error of metabolism, where children cannot metabolise fat. Treatment includes regular meals. Fasting for any length of time could lead to death and common childhood illnesses causing vomiting or loss of appetite often leads to hospitalisation until the child is well. This research analyses the experiences of the first generation of children in New Zealand to be diagnosed under the expanded newborn screening programme. Results indicate that the first year of life post diagnosis constructs MCADD in a relationship with two main themes: food and drink; and its association with illness. I argue that how children diagnosed with MCADD see themselves will develop within the constraints of habitus, daily behaviour radiating around food practices and preventative medical intervention shaped by the genetic diagnosis. This experiential, sensory knowledge is learned by the body in the first few years of life. If, as James and Hockey state: "particular kinds of bodies are produced through experience" (2007:45) what bodies are being constructed through the cultural positioning inherent in meals? How is their identity, already fluid in terms of childhood and a wellness/ illness continuum, reflexively shifting through the performance of routines and rituals of everyday nourishment? As parents learn a new 'illness habitus' of parenting, children develop a normative habitus based on this, a set of cultural dispositions imprinted upon the body that amplify already prevalent food messages.