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.
The INIA Consortium has conducted research to 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 as defined in the original grant agreement 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 to:
- 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 started on 1 March 2020 with a duration of 48 months. It has trained a cohort of 10 early stage researchers working collaboratively to develop knowledge to inform policy making and practice across a range of key sectors. It was established by the University of Huddersfield, the Université Libre de Bruxelles, websites Dublin City University, the University of Zurich, the Escuela Andaluza de Salud Pública / Andalusian School of Public Health and the Universitat Autònoma de Barcelona in collaboration with intersex activists and advocates, clinicians, and other specialists. INIA enables 21 organisations from more than 10 countries to work together on issues relating to intersex people / people with variations of sex characteristics, in a unique multidisciplinary and transectoral network. The Consortium includes international experts from a wide range of countries across the globe. The INIA work-package themes are shared across the main partners and the INIA projects, and they include:
- The life experiences of intersex people/people with variations of sex characteristics
- Service provision to intersex people/people with variations of sex characteristics and their families
- The legal aspects of intersex and variation of sex characteristics
- Critical approaches to social policy and intersex/variations of sex characteristics
10 Early Stage Researchers (who will become PhD students) were appointed across the whole consortium. They have participated in a pioneering multi-disciplinary, multiagency international training environment which has prepared them for future careers in academia, NGOs, policy making, or service provision. Each Early Stage Researcher benefited from 2-3 secondments to other countries which were hosted by NGOs, healthcare providers, and/or Universities.
INIA and Human Rights and Wellbeing
INIA recognises the need for human rights for intersex people/people with variations of sex characteristics, and that these rights are regularly infringed. We recognise the pressing need for the implementation of intersex human rights. INIA supports the position taken by the UN regarding intersex. The United Nations recognises that medically unnecessary surgeries and other procedures on intersex children before they are able to provide informed consent constitute harmful practice and they make a number of recommendations including State enactment of legislation to prohibit these practices. Other international and national bodies also address these practices as human rights abuses, including the Council of Europe and the European Parliament. INIA draws on the Yogyakarta Principles: http://yogyakartaprinciples.org/wp-content/uploads/2016/08/principles_en.pdf including:
Principle 10: The Right to Freedom from Torture and Cruel, Inhuman or Degrading Treatment or Punishment
Principle 18: Protection from Medical Abuses
INIA also draws on the Yogyakarta Principles plus 10: http://yogyakartaprinciples.org/wp-content/uploads/2017/11/A5_yogyakartaWEB-2.pdf
Principle 30: The Right to State Protection
Principle 32: The Right to Bodily and Mental Integrity
Principle 37: The Right to Truth
INIA recognises that organisations and individuals support the human rights and wellbeing of intersex people/people with variations of sex characteristics in different ways, including direct work on human rights issues, developing implementation tools and frameworks raising awareness, community organisation, political lobbying and activism, running support groups, and providing healthcare that maximises the bodily integrity, choice and agency of intersex infants, children, young people, and adults. INIA takes the position that these should be underpinned by the human rights principles discussed above and available via the linked websites.