Final Report Summary - INTERSEXIONS (The Sociological Aspects of the Management of Intersexuality) The general goal of this project was to investigate the sociological aspects of the medicalization of intersex variations. It addressed the changes in practices and medical guidelines over time, their significance according to the social actors involved, and their consequences on the lives of people with intersex characteristics. It analyzed the different cultural frames, and consequently, the different strategies of intersex/DSD organizations. It inquired how and why feminist movements and LGBTQ organizations, both focused on self-determination as well as civil and social rights, have addressed (or not addressed) intersex issues in recent decades. It also investigated the role of legislation in protecting bodily integrity and self-determination. It tried to analyze the framework within which the predominant definition of biological sex, gender identity and sexuality is elaborated and constructed, and if it is possible in our societies to accept alternative cultural models that could induce social recognition, equal rights and opportunities to those who do not conform with the sex/gender binary system because of their congenital variation of sex characteristics.There is an ongoing debate about terminology since the replacement of hermaphrodite, true and pseudo-hermaphrodite and intersex/intersexuality with Disorders of Sex Development (DSD). Adopted by primarily US medical professional associations during the Chicago Consensus Conference in 2005, and consecutively by most of the global medical system as well as parent and patient organizations. We use “intersex” as an umbrella term to refer to people born with sex characteristics (chromosomal, hormonal, gonadal, and/or external and internal sex anatomy) that do not fit the typical binary notions of female/male bodies.Aware of the different sensitivities and demands, we have interchangeably used dsd (in lower case characters with the significance of differences in sex development, instead of Disorders), and CVSC (for congenital variations of sex characteristics).The methodology was both qualitative and quantitative, consisting of in-depth narrative interviews with persons with intersex traits/CVSC, parents, and key professionals (medical providers, psychiatrists and psychotherapists), for a total of 60 interviews. We also conducted digital ethnography, field-work in Italian medical settings, and participated in national and international activism for intersex human rights, as well as performing quantitative data gathering, and analysis of national and international literature, including medical literature.As a Latin saying goes: natur non facit saltus. Genetics and biological sciences have widely demonstrated the variety of congenital differences in human sex characteristics. Paradoxically, the more we know about variations of sex characteristics, the more the ‘Western’ medical system tries to counteract or (as it is said, to) “normalize” those differences into an apparent conformity with the sex/gender dichotomy. In Italy, like in most of the world, current medical practices and biotechnology are still focused on a wide range of unnecessary, non life-saving, irreversible surgeries on minors, following medical guidelines based more on socio-cultural bias than on scientific knowledge.Since the early ‘90s, the international intersex movement has advocated against those unnecessary non consensual, elective surgeries, attesting to their (also irreversibile) negative effects (such as chronic pain, permanent loss of sensation in genital area, sexual dysfunction, sterilization caused by gonadectomy, incorrect sex/gender assignment, post-traumatic stress and long term mental health problems). Moreover there are bioethical problems related to prenatal diagnosis and treatment (such as the use of dexamethasone in foetuses with CAH), and termination of pregnancy based on CVSC diagnosis in the absence of exhaustive and competent information for expectant parents.The demand to respect intersex bodily integrity and self-determination is reflected by our research as well as other recent studies and hundreds of testimonies (HRW-InterAct 2017, Monro et al. 2017, Zillén et al. 2017). In the medical community, nationally and internationally, serious doubts about the current clinical protocols have been expressed, but those who speak out publicly are few (Elders et al. 2017, Kon 2015, Tonarti 2013, Vinhola 2013). The problem is also epistemological: variations in sex development are still considered a mistake of nature, something to be fixed, necessitating immediate medical intervention.A paradigm shift is urgent, if the aim is to protect human rights of people with intersex traits and the full free development of their capabilities (Nussbaum 2002).In this regard, we devised a new guideline proposal to stop non-consensual, medically unnecessary, elective treatments and surgeries in Italy. The goal is that some Regional Governments, that have partial autonomy in the management of the Health Care System, will approve our proposal and adopt it, initiating the first step towards a national change on intersex/CVSC issues.The rights to bodily integrity and self-determination for minors need to be guaranteed. At the same time it is necessary to provide appropriate and specialized health care for minors and adults. In addition psychological support for individuals with CVSC and their families should be available at their request. Instead, currently, parents and caregivers are often left with little or no information about support organizations, isolated, and compelled to make life changing decisions under pressure for their children. Peer support is fundamental. Presently a well-documented overview on the frequency of intersex variations is still lacking. The scarcity or, in many cases, absence of quantitative data is also due to concealment and negation of the phenomenon itself (i.e. strictly binary designations in medical records). Finding quantitative data is not only an instrument for epidemiological and sociodemographic analysis, but it is a goal per se.Dr. Balocchi had the opportunity to obtain data from a Regional Healthcare System Authority, collected by hospitals in Tuscany. The data spans the last 20 years and includes the period of recovering (specifically the date of entrance and the date of leaving), clinical justification, the diagnosis-related group (DRG), and some socio-demographic data such as age, place of residence, marital status, etc. The data refers to a population of 3682 female-assigned and 3259 male-assigned individuals. The 6941 individuals recovered in a hospital (59% in day-hospital, 41% more than one day of admission to the hospital) for reasons not necessarily related to medical issues connected to their intersex variation. The groundbreaking next step would be to contact all these individuals and ask them to participate in a national survey, through the RHSA.Being a sociologist but also an advocate for intersex human rights herself has allowed Dr. Balocchi to better draw the current situation of different organizations, their functioning, networking, and the relationships they have with each other and with non intersex/DSD organizations (such as LGBTQ* organizations and organizations for women’s rights). She also created the first global map of intersex organizations, mapping 148 organizations worldwide, up to now (https://www.intersexionsproject.eu/intersex-map/). The map is prevalently focused on organizations that operate in the human rights framework, but it includes also some organizations of patients and/or parents of minors with CVSC that offer information on specific variations and peer support for caregivers and patients. The organizations are classified on the basis of their membership/composition (only intersex activists, intersex activists and non-intersex allies, patients, parents of children with CVSC), thematic areas, aims, and cultural frames (that means if they consider i/CVSC a disease that needs medical care or, instead, a physiological variation of sex development which can be - but it is not necessarily - related to some medical conditions).Finally, the research period has marked fruitful intersectionalities and new practicable paths of investigation, such as those with movements for patients’ rights, disability movements, deaf communities’ rights, women’s rights, and antispecism as a critical theory and movement that try to deconstruct hierarchies based on binarism.
