In this thesis, I address people’s experiences of being born with a body that does not meet the normative definitions of male or female. This situation 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. I empirically explore alternative kinds of knowing that address some of these gaps.
In paper I, we explored how laypeople with and without personal experience of intersex/DSD made sense of current terms and theories. Ten focus groups consisting of people without personal experience were conducted, as well as semi-structured face-to-face interviews with 22 young people and 33 parents of children with experience of intersex/DSD. Most participants agreed that DSD was a problematic term. Many young people and parents preferred descriptive language and found intersex problematic. A majority of focus group participants, however, supported the term intersex. Results suggest that terms and theories should focus pragmatically on the everyday needs of those affected by such language and theorizing.
In paper II, we explored how 9 young women experienced receiving a diagnosis related to intersex/DSD, in order to better understand the processes that young people go through in developing knowing about their bodies. The analysis showed how participants' pre-diagnosis life experiences framed how medical information was perceived upon diagnosis. This research highlighted the importance of clinicians taking an exploratory and individualized approach to the sensitive process of helping young adults develop knowing about their embodiment.
In paper III we investigated knowing that goes beyond the medical information given by health professionals by exploring various kinds of knowing that parents use when caring for their children with congenital adrenal hyperplasia (CAH). Parents emphasized the importance of knowing what CAH is and what support their child needs, but also knowing how to cope and make sense of the new situation, how to attend to their child’s medical needs as well as how to talk to their child. Parents also reported challenges related to connecting with their social network, experiences of emergency care, and how to help their children become independent. These challenges require knowing now, which means being able to respond appropriately to unique circumstances.
In paper IV we investigated how laypeople, without personal experience of intersex/DSD, made sense of and understood the clinical dilemmas of gender assignment, early genital surgery and full disclosure of medical information. The analysis revealed how underlying understandings of how people are making sense of sex and gender, how they are dealing with difference and who is understood to be in a position of making decisions are all important, affecting how these dilemmas are approached and responded to.
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. 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.