Periodic Reporting for period 2 - INIA (Intersex- New Interdisciplinary Approaches)
Berichtszeitraum: 2022-03-01 bis 2024-08-31
Intersex people’s healthcare, social, and human rights issues are often overlooked, leading to widespread discrimination and human rights violations. Although up to 1.7% of the population is intersex/has variations in sex characteristics (IVSCs), resources to support their inclusion in society are lacking. Internationally, IVSC people face abuses such as non-consensual medical interventions on minors and violations of privacy and family life. Despite recognition of these issues, potentially harmful practices persist in many countries, impacting on IVSC people’s human rights and capacities to contribute to society. Policy makers and practitioners need better information on how to support IVSC individuals and their families. Advancing work in this area promotes a more respectful and diverse society.
The INIA Consortium aimed to conduct research supporting the wellbeing and rights of IVSC people, including individuals labelled with the term DSD (disorders or differences of sex development) in medical contexts.
The INIA project’s objectives were to:
- Generate knowledge that supports the wellbeing and social/economic contributions of intersex people/people with variations of sex characteristics.
- Use innovative interdisciplinary academic resources to push forward understandings of intersex and inform academic fields.
- Produce excellent research and evidence to help address societal challenges associated with intersex.
The training objectives of INIA were:
- Train a cohort of experts in the area of intersex and develop original sector-specific and intersectoral competencies.
- Develop researcher capacities in research methods with intersex people and their families and with stakeholders (including generating action learning).
- Establish a collaborative network of highly skilled researchers and national/international stakeholders.
The INIA project succeeded in providing innovative, interdisciplinary research that aims to be useful for IVSC people and wider society, across a range of sectors. Training goals were achieved and an international network of researchers and stakeholders was established.
The INIA Consortium aimed to conduct research supporting the wellbeing and rights of IVSC people, including individuals labelled with the term DSD (disorders or differences of sex development) in medical contexts.
The INIA project’s objectives were to:
- Generate knowledge that supports the wellbeing and social/economic contributions of intersex people/people with variations of sex characteristics.
- Use innovative interdisciplinary academic resources to push forward understandings of intersex and inform academic fields.
- Produce excellent research and evidence to help address societal challenges associated with intersex.
The training objectives of INIA were:
- Train a cohort of experts in the area of intersex and develop original sector-specific and intersectoral competencies.
- Develop researcher capacities in research methods with intersex people and their families and with stakeholders (including generating action learning).
- Establish a collaborative network of highly skilled researchers and national/international stakeholders.
The INIA project succeeded in providing innovative, interdisciplinary research that aims to be useful for IVSC people and wider society, across a range of sectors. Training goals were achieved and an international network of researchers and stakeholders was established.
Each ESR underwent an intensive training program, with over 70 workshops provided, covering research methods, specialist training from stakeholder organizations, and academic lectures. ESRs completed PhD training activities at their host institutions, and a variety of secondments took place at NGOs, QUANGOs, universities, and other sites. The training was successfully adapted to the challenges such as COVID-19 and the war on Ukraine.
The ESRs made very good progress with their projects, including research design, implementation and analysis. Individual and group outputs relating to the work packages were completed. A wide range of research methods were used, including action research, critical narrative analysis, and a survey. Two ebooks, 14 papers in peer reviewed journals, four project reports, a range of ebriefs, and other outputs such as videos, book chapters and a working paper were produced. ESRs presented widely at academic and stakeholder conferences and other events. Extensive engagement with public and stakeholder fora has taken place, with over 100 events to date.
The INIA programme has made strong contributions to knowledge. At a macro level it has demonstrated the extent of erasure of IVSC people’s lives, at the level of language, cultural representation, social policy, welfare provision, and medical intervention. This indicates the need for social reform to support the inclusion and rights of this population. The project provided novel insights into activism and specific areas of knowledge such as subjectivities and research ethics. At the micro level, the INIA programme has demonstrated the difficulties, richness and complexity of intersex people’s experiences across the life course. It has also revealed the challenges with providing appropriate healthcare and other types of service, and the extent of work still needed to include IVSC people fully within society.
The ESRs made very good progress with their projects, including research design, implementation and analysis. Individual and group outputs relating to the work packages were completed. A wide range of research methods were used, including action research, critical narrative analysis, and a survey. Two ebooks, 14 papers in peer reviewed journals, four project reports, a range of ebriefs, and other outputs such as videos, book chapters and a working paper were produced. ESRs presented widely at academic and stakeholder conferences and other events. Extensive engagement with public and stakeholder fora has taken place, with over 100 events to date.
The INIA programme has made strong contributions to knowledge. At a macro level it has demonstrated the extent of erasure of IVSC people’s lives, at the level of language, cultural representation, social policy, welfare provision, and medical intervention. This indicates the need for social reform to support the inclusion and rights of this population. The project provided novel insights into activism and specific areas of knowledge such as subjectivities and research ethics. At the micro level, the INIA programme has demonstrated the difficulties, richness and complexity of intersex people’s experiences across the life course. It has also revealed the challenges with providing appropriate healthcare and other types of service, and the extent of work still needed to include IVSC people fully within society.
The INIA program revealed the extent of lack of legal protections and/or implementation gaps regarding IVSC people’s rights and wellbeing, along with the deficits in knowledge, visibility, and services across sectors such as social work, education, youth work, and media. Findings point to the pressing need for reform (including in healthcare and education settings), for improved professional training for those working with IVSC people, and for psychologists and social workers to play a larger role in supporting intersex families and children in healthcare. INIA’s participatory research approach, involving intersex stakeholders at every stage, has been crucial, enhancing the project’s rigor and cross-sectoral impact by incorporating lived experience and contributions of intersex scholars and professionals into its work. The social impacts of the programme and the wider societal implications are quite profound, given the widespread erasure of intersex people from society, social policy, service provision and academic discourse.
Several ESRs went beyond what would normally be expected. For example, one of them is in the process of being commissioned to write a monograph on older intersex people (Addy Berry) whilst another was involved in organising a summer school with a stakeholder organisation and then a panel for the European Conference on Politics and Gender (Audrey Aegerter). These activities were supported by the PIs, who worked together with the ESRs to generate and maximise opportunities.
To enhance training and pastoral support during and after the COVID-19 pandemic, an additional weekly workshop series, the INIA café, was introduced, providing over 75 sessions. This proved highly effective, not only in supporting ESRs and the wider Consortium but also in building lasting networks. External speakers from the field were regularly invited, fostering innovation and helping with activities like fieldwork access. The café also strengthened pastoral support.
INIA, as a pioneering large international multi-stakeholder collaboration in the area of IVSC issues, has had a substantial effect on the field of intersex studies. This was not restricted to the individual ESR’s outputs, but rather spread internationally via academic and other networks, and was in particular fostered by the 2 international conferences and other actions such as the Special Edition of the journal Social Sciences, a Routledge monograph (forthcoming December 2024) and a planned edited book or special edition resulting from the final project conference.
Several ESRs went beyond what would normally be expected. For example, one of them is in the process of being commissioned to write a monograph on older intersex people (Addy Berry) whilst another was involved in organising a summer school with a stakeholder organisation and then a panel for the European Conference on Politics and Gender (Audrey Aegerter). These activities were supported by the PIs, who worked together with the ESRs to generate and maximise opportunities.
To enhance training and pastoral support during and after the COVID-19 pandemic, an additional weekly workshop series, the INIA café, was introduced, providing over 75 sessions. This proved highly effective, not only in supporting ESRs and the wider Consortium but also in building lasting networks. External speakers from the field were regularly invited, fostering innovation and helping with activities like fieldwork access. The café also strengthened pastoral support.
INIA, as a pioneering large international multi-stakeholder collaboration in the area of IVSC issues, has had a substantial effect on the field of intersex studies. This was not restricted to the individual ESR’s outputs, but rather spread internationally via academic and other networks, and was in particular fostered by the 2 international conferences and other actions such as the Special Edition of the journal Social Sciences, a Routledge monograph (forthcoming December 2024) and a planned edited book or special edition resulting from the final project conference.