Paper short abstract:

This paper reflects on the possibilities/limitations of autoethnography in researching experiences of girls living with chronic illness. How can the researchers' experience of living with disability be used during fieldwork and writing-up to deepen the understanding of childhood with disability?

Paper long abstract:

This paper is based on an ethnographic fieldwork conducted in Poland among girls and women with Turner syndrome. For the past 2,5 years I have been interviewing girls and women with TS and conducting observations at summer camps for girls and youth with TS. Being myself a women living with a disability, I use autoethnography as another lens to look at how girlhood, femininity, and womanhood are constructed vis-à-vis disability and chronic illness.

I argue that my own experience of living with a disability can be not only a useful tool during the fieldwork, making it easier for me and the girls with TS to understand each other and establish connection, but also can be of value at the time of writing up and interpretation.

Regardless of the nature of illness/disability, the position of the "unhealthy" child vis-à-vis the parents, doctors, and teachers is to large extent the same, and the questions of how to raise a ill child, when caring becomes controlling, and the attempts to empower are actually disempowering, remain similar. What does the perspective of the ethnographer who was once a girl with a disability bring to fieldwork among girls living with a chronic illness? How do my own childhood experiences influence the ways in which I look at the girls with ZT their parents and teachers? How can autoethography deepen the understanding of life as a disabled/chronically ill child?