Paper short abstract:

This paper explores the ways in which moralities of healthy eating are being practiced and negotiated by patients and/or families with children who have rare metabolic disorders.

Paper long abstract:

Drawing on ethnographic research in Poland my presentation aims at examining food related daily experiences and decision making processes of patients and/or families with children who have rare metabolic disorders.

In my presentation, I would like to slightly reverse the scope of the issues mentioned in the panel description.

Since problem around eating (both "mechanical" and "compositional") is essential in any metabolic disorder, it is easy to see it only as a regime, which needs to be followed, regularly reviewed and checked.

Even though, diet and dietary restrictions are at the core of managing metabolic disorders, practices and choices around food should not be seen only as "proper nutrition" within some medical system, but mainly as complicated (often requiring special trainings) manoeuvring around special requirements and retractions in order to achieve resemblance to the "home made" food and keep the commensality with the rest of the family.

I suggest to look beyond medical inclinations in order to see social practices and hidden moralities

embedded in the food habits, which by default should be healthy, but actually are aiming at very different concepts.