Community Research and Development Information Service - CORDIS

Periodic Report Summary 1 - INTERSEXIONS (The Sociological Aspects of the Management of Intersexuality)

In brief, the interrelated specific research project objectives are as follows:

a) to investigate the medical practices adopted in the management of intersex variations and the changes in the medical guidelines and protocols with a specific focus on the Italian situation, taking into account the medical, legal, juridical, socio-cultural, philosophical and anthropological dimensions;

b) to collect and analyze quantitative data on intersex newborns and adults.

c) to analyze the viewpoints and experiences of all the social actors involved: intersex people and patients, parents of intersex children, medical professional, and intersex and LGBTQ* activists;

d) to inquire how and why feminist movements and LGBTQ* organizations, both focused on self-determination and social rights, in the last decades decided to face (or not) the intersex issues, taking into account the different contexts;

e) to analyze which are the different cultural frames and, consequently, the strategies of the intersex and dsd associations, considering their approach to intersex variations, whether it is based on the concept that it is a disease and a pathological condition or that it is a physiological variant of the human development which can (but not necessarily) be related to some medical diseases.

DR. Balocchi’s project is characterized by a required interdisciplinary approach due to the complexity and the multidisciplinarity of the research topic which covers sociological, bio-medical, anthropological, political, juridical, bioethical and human rights aspects.

The work is consistent with the structure of the original project: in some cases there have been unexpected opportunities which anticipated some activities with productive and fruitful results. Some other activities have instead been postponed, without affecting however the completion of the project itself.

The web-digital collection, the international literature review, the ethnographic work, and the collection of personal stories and interviews with some key informants have given her a huge amount of data and valuable information to work with in depth for a very long time.
As she writes, notwithstanding the complexity of the issues, some key points have emerged clearly, such as: the dyscrasia between the current medical practices in the management of intersex variations in the majority of countries and what the intersex activists and many patients’ organizations ask for in terms of healthcare, self-determination, and bodily integrity; the clear social and cultural expectations and heteronormative prejudices that influence the construction of medical discourse on the definitions of female and male and their ‘functionalities’, and the consequent pathologisation of the anomalies and the differences in sexual development, which are considered disorders that needs to be ‘fixed’; the apparent paradox that the more is known about human biological complexity and diversity, the more is done from a medical standpoint to erase, through cosmetic surgeries and pharmacological treatments, such diversity and to re-conduct it to social gender/sex binarism; the still tight connection between the current medical treatments and the outdated unscientific assumptions linked to the ‘50s Optimum Gender Rearing paradigm constructed by the psychologist John Money; the extreme theoretical and epistemological confusion inside the medical community between different basic concepts like gender, gender identity, gender roles, sexual orientation, sexual identity; the contradictions between some public statements by clinicians and the real practices they adopt; the epistemic injustice and hermeneutical marginalization of intersex people; the loneliness that parents of intersex infants and children experience and are left with.

Because of the concealment, denial, and invisibilization of the phenomenon there is a scarcity or, in some cases, absolute absence of quantitative data. She has experienced difficulties in obtaining data on the incidence of intersex variations as well as on the hospitalization, and difficulties in obtaining the medical guidelines used by professionals in the different Regions in Italy as well as abroad.
Notwithstanding that she had the opportunity to analyze the draft of a new proposal for a Piano Diagnostico Terapeutico Assistenziale (PDTA) on ‘dsd’, written by the medical professionals. That PDTA proposal still included unnecessary cosmetic surgeries, such as clitoris reduction and vaginal construction in the early stage of infancy, notwithstanding that in recent years some international institutions, including the World Health Organization, declared those medical procedures as human rights violations, genital mutilation, and torture (see the Parliamentary Assembly of the Council of Europe, 2013, the Fundamental Rights Agency and the WHO, 2015, the United Nation, 2015 and 2016).

She also has the opportunity to conduct an epidemiological and sociodemographic analysis on quantitative data related to people with intersex variations hospitalized in Tuscany (data from the Tuscan Regional Healthcare System Authority).

Some of the expected final results have been taking shape, such as raising awareness about intersex human rights, and giving public visibility to a still unknown and deeply concealed issue in Italy; creating networks between academic and research centers, intersex organizations, officers, and politicians at national and international level; educating and informing not only the broader society, but also the medical community with the aim to eliminate prejudices and stigma.

One of the mid-term aims is to propose new bioethical guidelines to the Italian Regions to stop non-consensual and unnecessary genital surgeries; another one is to offer guidelines and recommendations for the European policy-making and policy-decision, and to transfer best practices at national and international level.

One of her long-term aims is to create an Observatory on intersex issues, composed of researchers and intersex advocates, with the aims to monitor the situation in Italy, to promote research, and to disseminate scientific information.

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Life Sciences
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