Knowing bodies: Making sense of Intersex/DSD a decade post-consensus
AbstractIn this thesis, I address people’s experiences of being born with a body that does not meet the normative definitions of male or female. The situation when sex characteristics develop in ways that do not conform to binary models is referred to as intersex or disorders of sex development (DSD). This research has been done in the context of the 2006 medical consensus statement on intersex/DSD, and in the context of repeated human rights claims aiming to curtail medical interventions. Building on transformative and pragmatic theoretical understandings, I propose that what is conventionally considered to be knowledge, in this topic area, is built on diverse but specific kinds of knowing. I argue that the use of these kinds of knowing creates gaps in research and clinical practice that, in turn, has consequences for people’s everyday lives and wellbeing. In this thesis, I empirically explore alternative kinds of knowing that address some of the gaps evident in the current literature. The conclusions made in this thesis are that the specific experiences of having a certain body can be understood as contributory knowing that goes beyond what is presented in the medical, psychosocial or human rights literature in the topic area. This knowing involves developing language that works in everyday life (paper I), emotional and intellectual work that goes beyond medical information(paper II and III) as well as developing certain kinds of skills to handle everyday life (paper III). Finally, building on the insights from paper IV, I suggest that engaging with underlying understandings that shape lay and expert knowing might be more appropriate than highlighting certain principles in order to promote good care and human rights in the topic area. The pragmatic and flexible knowing of participants should inform future developments in research and health care, where an essential focus should be to continue to develop knowing that could be useful for people in their everyday life.
List of papers
|I. Lundberg, T., Hegarty, P., & Roen, K. (Submitted). Making sense of ”Intersex” and ”DSD”: Laypeople’s understandings of terms and theories. To be published. The paper is not available in DUO awaiting publishing.|
|II. Lundberg, T., Roen, K., Hirschberg, A. L., & Frisén, L. (2016). "It's part of me, not all of me": Young women's experiences of receiving a diagnosis related to diverse sex development. Journal of Pediatric and Adolescent Gynecology, 29(4), 338-343. The paper is not available in DUO. The published version is available at: https://doi.org/10.1016/j.jpag.2015.11.009|
|III. Lundberg, T., Lindström, A., Roen, K., & Hegarty, P. (2016). From knowing nothing to knowing what, how and now: Parents’ experiences of caring for their children with congenital adrenal hyperplasia. Journal of Pediatric Psychology. The paper is not available in DUO. The published version is available at: https://doi.org/10.1093/jpepsy/jsw001|
|IV. Lundberg, T., Dønåsen, I., Hegarty, P., & Roen, K. (Submitted). Moving forward with Intersex/DSD rights and care: Focusing on principles or engaging with dilemmas? To be published. The paper is not available in DUO awaiting publishing.|