Paper Short Abstract:

Drawing from anthropological research on rare metabolic diseases (IMDs) and Landecker’s (2013) analysis of industrial and postindustrial metabolism, this paper examines how the smartphone is used as a metaphor for people with IMDs, whose bodies are equipped with faulty batteries.

Paper Abstract:

This paper draws from anthropological research on rare inherited metabolic disorders (IMDs) in Finland and Poland and document analysis in rare diseases. I attend to notions of the body and metabolism in informational materials for patients and their caregivers. Focusing on recent presentations, I examine how metaphor is used to understand the body and metabolism in people living with LC-FAOD (long-chain fatty acid oxidation disorders). This body is described as a smartphone equipped with a “faulty battery” (Ultragenyx 2022). Following Landecker’s (2013) distinction between an industrial and postindustrial metabolism, I juxtapose previous informational materials that presented food as an energy source with more recent presentations in which food is depicted as a signal in the larger context of communication and regulation. I argue that this shift from understanding metabolism as a factory to the idea of metabolism as a regulatory zone (Landecker 2013) is indicative of broader changes in the field of IMDs and rare diseases. The development of technologies such as newborn screening and better management of rare diseases has influenced patient mortality and morbidity. Furthermore, the growing importance of information systems and global companies within biomedicine has engendered new vocabularies that are no longer rooted in biology. Thus, this understanding of the body and metabolism as a smartphone and its battery resonates with children and adolescents. While more user friendly, the smartphone metaphor obscures the importance of infrastructures (Star 1999) and agency, which are crucial for the wellbeing of the LC-FAOD body with its faulty battery.