The power in a name: diagnostic terminology and diverse experiences

Abstract

Soon after the disorders of sex development (DSD) terminology was introduced in the 2006 medical consensus statement on the management of intersex traits, intersexuality became an outdated term within medical discourse. Because of the way the DSD terminology was officially introduced by an international medical consortium, it appears individuals with intersex traits are left to engage with it. Interviews with thirty-seven research participants with intersex traits show that DSD terminology is engaged in different ways by those the terminology is meant to describe, with some arguing against it, others supporting it and a few being indifferent to it. Participants also tended to describe self-understandings that might conflict with the intersex identity that was observed in the 1990s. Patterns across participants’ preferred terminology and their relationships with family members and medical providers are also observed.

Keywords:

• intersex
• DSD
• qualitative naming
• identity formation
• family and medical relationships

Notes

1. I use the language of ‘intersex’ and ‘intersexuality’ throughout this paper as opposed to ‘disorders of sex development’ for three reasons. First, due to the greater visibility such words have had in academic publications, across disciplines, over the newer DSD terminology, I found it was necessary to continue to reach a broader audience. Second, recent publications in the medical sciences have, for the most part, abandoned ‘intersex’ language despite the fact that not all individuals with such conditions prefer DSD terminology (see Pasterski et al., 2010a, 2010b). Third, and the main reason for my choice in terminology, as an individual with an intersex trait, I prefer intersex language over DSD nomenclature.

2. Cissexism is the belief that gender is authentic only when it is neatly aligned with sex and sexuality.

3. AISSG-USA now goes by AIS-DSD Support Group. Available at: http://www.aisdsd.org/

4. Participant has indicated preference for this spelling of the chosen pseudonym. In an earlier publication, the pseudonym was spelled Pigeon (see Davis, 2011).

Additional information

Notes on contributors

Georgiann Davis

Georgiann Davis is an assistant professor of sociology at Southern Illinois University Edwardsville. Her research focuses on the contemporary US medical management of intersexuality – specifically, how it has been debated and experienced by individuals with intersex traits, their parents and medical experts since the formal introduction of ‘disorder of sex development’ nomenclature in 2006. She can be reached at [email protected].