Turner Syndrome: Socialization patterns and the management of embodiment in chronic disease. An interdisciplinary approach

This project aims at describing the socio-cultural dimensions of Turner syndrome from inter- and transdisciplinary perspectives. Turner syndrome (TS) is a genetic disorder that affects only females; it is estimated that approximately 8,000 to 10,000 people live with TS in Poland. Utilizing ethnographic methods, the project examines issues pertaining to the identities of girls and women with TS and their embodiments.

TS is a multivalent category that, as we contend, calls for multidimensional approaches. On the one hand, it is a genetic disorder that is characterized by certain characteristic symptoms and has a prescribed biomedical treatment. However, it is also a cultural phenomenon that concerns many people (patients, their families, and their social environment) and as such epitomizes current cultural issues and problems, such as gender ideals, embodiment, and medicalization.

People with TS and their families share many experiences in common with others who have chronic diseases. Nonetheless, this project focuses on the infertility of girls and women with Turner syndrome, which characterizes TS. Although in some countries such women can become pregnant thanks to assisted reproductive technologies, our preliminary research conducted with a group of Polish families shows that motherhood is not a social role girls with TS are prepared for by their families.

Drawing on Turner syndrome, this project examines cultural constructions of femaleness as well as socialization patterns especially regarding gender, age, norms, and pathology. Furthermore, it attends to embodiment as a site of social construction of and resistance to socio-cultural ideals of the body and reproduction among others.

Funding: Polish Ministry of Science and Higher Education/ National Program for the Development of Humanities

Principal Investigator: Dr hab. Magdalena Radkowska-Walkowicz, Ph.D. (University of Warsaw)

Main Investigators: Ewa Maciejewska-Mroczek, Ph.D. (University of Warsaw), Maria Reimann, M.A. (University of Warsaw), Anna Krawczak, M.A., Małgorzata Rajtar, Ph.D. (Adam Mickiewicz University in Poznań)