Conducted by: Dr Daniela Crocetti, University of Huddersfield (Principal researcher), Professor Surya Monro, University of Huddersfield (Coordinator), Dr Tracey Yeadon-Lee, University of Huddersfield (Co-Investigator).

Collaborators: Zwischengeschlecht/ Stop Intersex Genital Mutilation, Switzerland.

Dates: 01/09/2016 – 31/08/2018

Read our UK report: Intersex, Variations of Sex Characteristics, and DSD: The Need for Change by Surya Monro, Daniela Crocetti, and Tracey Yeadon-Lee with Fae Garland and Mitch Travis, University of Huddersfield Press, Huddersfield. Hard copies of the report can be ordered via the following link: Intersex, Variations of Sex Characteristics, and DSD: The Need for Change | University of Huddersfield Online Store.

Background information:

‘Intersex’ is an umbrella-term that encompasses various physical variations in the components of the parts of the body we consider gendered or sexed; primarily chromosomes, genetic markers, gonads, hormones, reproductive organs, genitals, and secondary sex characteristics (such as facial hair or muscle mass). Despite the fact that these variations generally do not threaten the physical health of the individual (there are correlated health problems only in certain circumstances), people with these biological variations are often subjected to involuntary unnecessary surgery and other medical treatment. Up to 2% of the population may be born with invisible or visible Intersex traits, and between 0.1% and 0.05% are detected and subject to medical attention.

Intersex is the term used by most International activists who work on Human Rights aspects. Human rights activist Miriam van der Have states "Intersex variations are not an abnormality or disease. For me intersex refers to the lived experience of the socio-cultural consequences of being born with a body that does not fit within the normative definitions of "man" and "woman." In short, it is about our experiences and not a medical diagnosis." Some activists also use ‘variations of sex characteristics’, aiming to include ‘sex characteristics’ as a category in national and international Human Rights protections.

The term ‘DSD’ (Disorders of Sex Development) is instead used in most medical contexts, and was coined in 2006 by a small group of activists, academics and doctors at the Chicago Consensus Convention. This meeting sought to address the problematic invasive care model, particularly the lack of informed consent and childhood surgeries. With this new term DSD they hoped to eliminate the social stigma tied to the terms ‘Intersex’ and ‘Hermaphroditism’ which could give an image of un-defined gender or sexuality, creating a term that spoke to the biological issues instead of social ones. However, the term ‘disorder’ also carries the stigma of being considered ‘out of order’ (i.e. in need of fixing), and it has not been widely accepted by those directly implicated.

Some Social Health Activist (SHA; patient associations and/or activists) might refer instead to one of the more than 30 variations in the Intersex and/or DSD umbrella, such as Androgen Insensitivity Syndrome, Congenital Adrenal Hyperplasia, Klinefelter’s syndrome, Hypospadias (and more). These groups and individuals might not use either Intersex or DSD in most of their communication.

Language and terminology, among the many Human Rights issues, are contested in this field.

Aim and objectives:

This project investigates human rights framing and strategies used to address Intersex and DSD in Europe (specifically focusing on Italy, Switzerland and the UK). It will map the agendas, actions and results of the diverse Intersex and DSD activists, and will include the views of clinicians and policy makers working in the Intersex and DSD area. In order to be as inclusive as possible, the terms ‘Intersex’, ‘DSD’, ‘variations of sex characteristics’ or other terms will be used based on the choice of the research participant. The project has four basic aims:

  • Map the strategies, agendas, actions and results of Intersex and DSD activists in Italy, Switzerland and the UK.
  • Map policy and medical perspectives and actions regarding Intersex Human Rights and Social Health Activist claims.
  • Generate knowledge about Intersex and DSD human rights, citizenship and democracy issues.
  • Facilitate Intersex led public engagement.

Methodologies:

The project utilizes a qualitative approach in order to gain an in-depth understanding of activist and policy perspectives. It is interdisciplinary in its use of concepts and tools adopted from sociology, gender and sexuality studies, social study of science, politics, social policy and socio-legal studies. This project has received ethics approval from the University of Huddersfield, reference SREP/2016/080.

Anticipated outcomes and impact of the project:

The project will draw out issues that have been addressed (or not) at their associated policy levels, from local hospitals to national legislation to UN and EU policy documents. It will potentially frame successful strategies to enhance Intersex agency. Outputs will include journal papers, a report, and conference papers. We will hold stakeholder workshops in the UK, Italy and Switzerland and will organise an international conference to take place in summer 2018. These outputs and activities will take place in collaboration with Intersex activists.

This project has received funding from the European Union’s Horizon 2020 Research and Innovation Programme under the Marie Sklodowska-Curie grant agreement No 703352.

Conference: Intersex Social Sciences: Activism, Human Rights, and Citizenship, 4-5 June 2018, University of Bologna, Italy.