The interactive map of intersex organizations is part of INTERSEXIONS, a wide three-years sociological research project by Dr. Michela Balocchi, funded by the Seventh Framework Program FP7-PEOPLE-2013 IOF of the European Union Marie Curie Actions n. 627162.
The initial project planned was to map the intersex organizations in the US and Europe – with particular attention to Italy, but during the research work, it was possible to widen the information gathering to include all of the continents.
The map is inevitably a work in progress, especially because of the vitality with which, in the recent years, new intersex organizations and mixed ones with a specific focus on the issue of intersex human rights are born and are emerging.
We classified the organizations on the basis of their internal composition and by thematic areas and aims.
We tried to differentiate among:
Organizations composed mostly or exclusively of intersex people and that deal uniquely with the issue of intersex as a violation and non-recognition of human rights (purple);
Mixed organizations composed of intersex people and allies who are activists for intersex human rights that deal with other issues as well (green);
Organizations that deal with only one variation and that usually are composed of people who self-define as patients, affected people, and/or relatives of people with a specific variation for which they seek to offer information and support, including medical support (yellow);
Organizations that are inactive or temporarily inactive (grey)
Finally, we reported on some individual projects conducted by a single intersex person or with the help of some other intersex people or allies (orange).
As mentioned, the map is an interactive, work-in-progress project: to keep it alive and up-to-date we need your help.
Here you can find the form to submit information about your organization, if it has not been mapped yet, or to add or modify information if it already has.
We tried to map all the organizations which deal with intersex human rights (purple, green, orange) since this was the original aim of the map.
We also included some organizations of patients and/or relatives of minors with atypical sex characteristics (yellow) that usually do not operate in the human rights framework, but that offer information on specific variations and peer support.
That choice reflects the fact that one of our aims is to offer the widest range of information to people directly involved and to their relatives, given the persistent difficulty in having detailed information on the issue.
Moreover we are aware of the fact that many people with congenital variations in sex characteristics seek for information on specific variations and peer support, and do not necessarily identify in intersex activism.
This map was made possible also thanks to the valuable collaboration of Nicole Braida, sociologist and activist for intersex people’s human rights; Morgan Carpenter, current co-chair of Intersex Human Rights Australia (IHRA) formerly known as Organization Intersex International Australia and intersex-expert activist; and Aleksander Beryozkin, co-founder of the Association of Intersex people Speaking Russian in the world (ARSI) and intersex activist. A special thanks to the creator of the map, Marco Pini.
In this website, as well as in the whole project INTERSEXIONS, we mostly use the term intersex as an umbrella term to point at all the variations of chromosomal, gonadal and/or anatomic sex that do not fit in the classical binary notions of feminine/masculine bodies.
To the term intersex we alternate other definitions as: variations/differences in sex development; congenital variations in sex characteristics (1); differences in sex development with the acronym dsd in small letters to differentiate it from the original acronym DSD (Disorders of Sex Development) coined at the 2006 Consensus Conference and still used today in medical settings as an umbrella term to point to the chromosomal, gonadal and/or anatomic variations in the development of sex (2). Thus, with dsd in small letters we substitute the term disorder with that of differences in sex development, in order to take distance from the idea that the variations in sex development are a pathological, deviant condition in the person’s development, knowing that only some variations are tied to medical conditions.
(1) Proposed replacement terminology in GATE: ‘Submission by GATE to the World Health Organization: Intersex codes in the International Classification of Diseases (ICD)’, June 2017.
(2) Davis G. (2011), ‘DSD is a Perfectly Fine Term: Reasserting Medical Authority Through a Shift in Intersex Terminology’, in Sociology of Diagnosis Advances in Medical Sociology, V. 12, 155–182.