Periodic Reporting for period 1 - INIA (Intersex- New Interdisciplinary Approaches)
Reporting period: 2020-03-01 to 2022-02-28
Intersex people’s healthcare, social and human rights issues are often overlooked. They continue to face exposure to multiple forms of human rights violations and discrimination, requiring cross-sectoral policy responses in fields including healthcare, education, and the law. Whilst up to 1.7% of the population have a variation of sex characteristic, there is a lack of resources to include them in society in all spheres. It is recognised at an international level that intersex people suffer human rights abuses including those relating to non-consensual irreversible medical interventions on minors, forced sterilisation, and a lack of privacy and rights to family life. However, there is a huge gap between these human rights principles and the situation in most individual states, where harmful medical practices continue. Practitioners across all sectors need more information on how to support intersex people and their families. In addition, there is insufficient knowledge in relation to intersex issues, and a need for the development of interdisciplinary scholarship in the field. Work in this area is socially important as it supports diversity and equality and helps to enable intersex people and those with variations of sex characteristics to contribute fully to society. It also contributes towards the reform of healthcare practices in an area where change is needed.
The INIA Consortium aims to conduct research that will support the wellbeing and rights of intersex people and those who are born with some variations of sex characteristics but do not identify as intersex (hereafter: intersex people/people with variations of sex characteristics). This includes people who are given the label of DSD (disorders or differences of sex development) in medical contexts.
The INIA project’s objectives are 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 are:
- 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 Consortium aims to conduct research that will support the wellbeing and rights of intersex people and those who are born with some variations of sex characteristics but do not identify as intersex (hereafter: intersex people/people with variations of sex characteristics). This includes people who are given the label of DSD (disorders or differences of sex development) in medical contexts.
The INIA project’s objectives are 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 are:
- 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 consortium governance structures and website have been established, recruitment of the Early Stage Researchers (ESRs) has taken place, and each ESR has undertaken an intense programme of training. Over 45 training workshops have been provided, including research methods training, specialist trainings from stakeholder organisations, and academic lectures. ESRS have completed PhD training activities at host institutions. A range of secondments have been completed at NGOs, QUANGOs, universities, and other sites. THe training was were successfully adapted to the challenge of Covid19; training events were delivered online and some secondments have been postponed.
The ESRs have made good progress with their projects, despite difficulties associated with covid (such as delays in onset of contract and illness). Research designs have been completed, scoping and literature work done, and ethics applications granted. Several ESRs have begun fieldwork, with a few ahead of schedule. Several publications have already been produced, with more under preparation, and ESRs are widely presenting early findings at academic and stakeholder conferences and other events. As well as dissemination activities, extensive engagement with public and stakeholder fora has taken place, with over 40 events to date.
The INIA programme is already making strong contributions to knowledge. In the healthcare field, we have shown the need for psychologists to play a stronger role in healthcare provision to intersex families and their children. We have demonstrated the lack of appropriate care for this group across the life-course and revealed deficits in healthcare for older intersex people. The programme has highlighted a lack of legal support/protection for intersex people in most countries and the absence of knowledge, visibility, and service provision for intersex people across every sector, including social work, education, youth work, and the media. Knowledge that will inform suggestions for policy reform is being developed, for example early findings indicate a need for more training for professionals who may work with intersex people. In addition, the participative action research approach of INIA has proved innovative and crucial; the project includes intersex stakeholders at every stage, as part of a commitment to epistemic justice. This improves rigour because it allows the expertise of people with lived experience to influence the work of the Consortium, and it maximises the reach of the programme and its cross-sectoral impact.
The ESRs have made good progress with their projects, despite difficulties associated with covid (such as delays in onset of contract and illness). Research designs have been completed, scoping and literature work done, and ethics applications granted. Several ESRs have begun fieldwork, with a few ahead of schedule. Several publications have already been produced, with more under preparation, and ESRs are widely presenting early findings at academic and stakeholder conferences and other events. As well as dissemination activities, extensive engagement with public and stakeholder fora has taken place, with over 40 events to date.
The INIA programme is already making strong contributions to knowledge. In the healthcare field, we have shown the need for psychologists to play a stronger role in healthcare provision to intersex families and their children. We have demonstrated the lack of appropriate care for this group across the life-course and revealed deficits in healthcare for older intersex people. The programme has highlighted a lack of legal support/protection for intersex people in most countries and the absence of knowledge, visibility, and service provision for intersex people across every sector, including social work, education, youth work, and the media. Knowledge that will inform suggestions for policy reform is being developed, for example early findings indicate a need for more training for professionals who may work with intersex people. In addition, the participative action research approach of INIA has proved innovative and crucial; the project includes intersex stakeholders at every stage, as part of a commitment to epistemic justice. This improves rigour because it allows the expertise of people with lived experience to influence the work of the Consortium, and it maximises the reach of the programme and its cross-sectoral impact.
Several ESRs have gone beyond what would normally be expected at this relatively early stage. For example one of them produced a video lecture which provides an accessible introduction to key issues for the public (Adeline Berry, produced with secondment host Open University UK) 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 are supported by the PIs, who work together with the ESRs to generate and maximise opportunities. It is anticipated that these activities will increase further towards the end of the programme when more results are available. 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. For example there is an absence of social policy scholarship concerning intersex issues, which is highlighted in an academic paper under development by ESR Saifa Wall and his supervisors.
To maximise training and pastoral support, an additional weekly workshop/lecture was introduced, called the INIA café (over 50 sessions provided). This has proved to be very useful, not only in supporting the ESRs and the Consortium more widely, but also in building networks that will sustain beyond the end of the programme. External speakers working in the field are regularly invited to the café, fostering an environment of innovation and assisting with other activities such as accessing for fieldwork. The café also allowed a stronger pastoral element, which would otherwise have been underdeveloped in the ITN. Planning for another training innovation is planned, with financial support from the University of Huddersfield: a virtual conference to take place in 2023 titled Centring Intersex: Global and local dimensions. ESRs will be invited and the conference will lead to the publication of a journal Special Edition, again maximising the academic development of the ESRS and their networking capacities. Both these interventions are beyond the state of the art as originally planned in the funding agreement.
To maximise training and pastoral support, an additional weekly workshop/lecture was introduced, called the INIA café (over 50 sessions provided). This has proved to be very useful, not only in supporting the ESRs and the Consortium more widely, but also in building networks that will sustain beyond the end of the programme. External speakers working in the field are regularly invited to the café, fostering an environment of innovation and assisting with other activities such as accessing for fieldwork. The café also allowed a stronger pastoral element, which would otherwise have been underdeveloped in the ITN. Planning for another training innovation is planned, with financial support from the University of Huddersfield: a virtual conference to take place in 2023 titled Centring Intersex: Global and local dimensions. ESRs will be invited and the conference will lead to the publication of a journal Special Edition, again maximising the academic development of the ESRS and their networking capacities. Both these interventions are beyond the state of the art as originally planned in the funding agreement.