The Fight For Visibility

Awareness and education around the lived experiences of intersex people is sorely lacking across a range of key areas within society, which results in harmful medical procedures, stigma, and discrimination. Despite the United Nations reporting that 1.78 percent of the world’s population live with variations in their sex characteristics to some degree, their stories largely remain hidden.

A new international research network project, Intersex – New Interdisciplinary Approaches (INIA), seeks to empower the voices of intersex people to help create an inclusive environment across various key sectors in society. Researchers from across the globe will be working collaboratively to develop an extensive body of academic work to inform meaningful future policy-making and practice.

Intersex refers to a person whose sex characteristics do not fit typical definitions of male and female bodies. Many face challenges, including unnecessary and harmful medical surgeries at birth, human rights violations and discriminations, ignorant societal attitudes, and restrictive stereotypes regarding gender binaries. Against this backdrop, Intersex - New Interdisciplinary Approaches (INIA) was developed to address key issues affecting the wellbeing of people living with variations in their sex characteristics.

An early stage researcher for INIA, activist and artist, Adeline Berry, reflects on what this research project means to them as an intersex person, “When I heard about the project, I cried. I feel like I’ve spent my entire life banging my head off the wall trying to explain to doctors, or anyone who will listen, all the ways in which my intersex diagnosis at birth and subsequent medical interventions have negatively impacted my life. So this is momentous.”

Barry further shared, “Despite all of the terrible things in the world, I am alive to witness the moments when the voices of so many victims, from BLM, #Metoo, the trans movement, that have been silenced through the ages are finally being heard and it feels good to be working to have intersex voices and experiences heard and to be part of that fight.”

In 2019, the European Parliament passed a resolution calling on all member states to cease surgeries performed on intersex people at birth. Malta and the Indian state of Tamil Nadu explicitly prohibit such medical procedures without the individual’s consent. Other countries, such as Portugal, France, and Uruguay, offer some legal protection, but may still stop short of pausing non-consensual operations. While an end to these medical procedures offer hope for a new generation of people born with variations in their sex characteristics, there are still many who have been left, often times on their own, to reckon with these traumatic acts of ‘normalising’. As part of INIA, Barry will examine the experiences of older intersex people who had to address the challenges that arised from this later in life.

Barry expressed, “There is much discussion amongst the medical community on when to do surgery on intersex infants and how to do surgery, but nothing really after infancy. It’s very much a set-it-and-forget-it approach to young intersex bodies. There hasn’t been an area of my life that hasn’t been negatively impacted by decisions surgeons and doctors made in my early childhood - from future medical care to employment to family court - so it’s a subject I’m very passionate about.”

INIA empowers a multinational network of 21 organisations from across 10 countries to join together on issues relating to intersex people and those with variations of sex characteristics but who do not identify as intersex. The project provides 10 key topics for researchers to explore:

1 Older intersex people.

2 Equality, diversity and intersex policy-making: A comparison of the Republic of Ireland and the UK.

3 Unpacking the conditions of the emergence of intersex activism.

4 Framing legislative and policy reform to improve the lived experience of intersex in Ireland and Malta.

5 The inculcation of awareness of intersex in education in Ireland and Sweden.

6 The impact of parental psychosocial indicators on decision-making and outcome regarding intersex in Europe.

7 The role, dissemination and impact of clinical ethics in multidisciplinary teams on intersex in Europe.

8 Intersex subjectivities and the lived experience of intersex people.

9 Research ethics in intersex studies: Exploring ethical principles for a human-rights-based research practice.

10 The right to bodily integrity, autonomy and self-determination: Demands and strategies of international and regional intersex activist networks and human rights bodies.

Professional Master of Education chairperson and assistant professor in DCU School of Human Development, Dr Majella McSharry, reflected on the importance of the international network, “It is a milestone in the work of any academic to be able to contribute to research that brings real change to people’s lives...It is a privilege to be part of a community where human rights and the empowerment of people are at its core.”

Dr McSharry has previously carried out extensive research into the construction and articulation of gender through embodied praxis, stigma, and bullying. She addresses the importance of including lived experiences within academic research, “Many educators and curricula remain silent on intersex issues. This research has the potential to give greater voice to intersex individuals and those with variations of sex characteristics within education contexts and beyond, by raising awareness of human rights violations, by ‘normalising’ bodily diversity and by encouraging individual and collective agency.”

In many ways, a lack of awareness has severely impacted the agency of younger people born with variations in their sex characteristics. It affects their ability to communicate what they need and to be understood within an educational setting. According to the 2015 survey, Intersex: Stories and Statistics from Australia, developed by Tiffany Jones of Sydney’s Macquarie University, access to education poses several challenges. 18 percent of the 272 respondents spoke about being unable to complete secondary school due to bullying, non-inclusive information, and requiring extensive time off for medical treatments during puberty.

Researcher and Marie Sklowdowska Curie Fellow, Axel Keating, shared, “More work is needed to help support the educational success of intersex students and students with variations of sex characteristics in order to assist in their development as active participants in their learning and the larger world as they navigate discrimination, medical trauma, and human rights violations. The development and implementation of comprehensive curriculum on intersex traits and variations of sex characteristics is vital,” they continued.

The aformentioned Australia report also investigates how people see their own bodies, access to social supports, experiences with health services and employment, and highlighting both challenges and uplifting steps towards recognition.

This research has the potential to give greater voice to intersex individuals

Early stage researcher and Marie Sklowdowska Curie fellow, Stephanie Lum, has diligently worked towards improving everyday life for intersex people in Australia through their advocacy work with Intersex Human Rights Australia and in the position of a policy officer for local government.

Lum moved from Australia to Ireland after hearing about INIA as a means of continuing their advocacy work on an international level. They shared, “It felt like a really good fit with where my interests were and where I feel I am best positioned to make a contribution to the intersex community. Where there are gaps, this research will look towards solutions to improve protections for intersex people and improve their lived experiences.”

In Ireland, there have been great strides made in promoting visibility and awareness (but, sadly, forward motions for policy and practice remain stagnant). During International Intersex Solidarity Day, historic landmarks, government buildings and educational institutions were lit up purple in a campaign co-ordinated by the Intersex Mapping Study at Dublin City University.

Assistant professor in law at DCU, and lead researcher at the Intersex Mapping Study, Dr Tanya Ní Mhuirthile, will also join INIA as a project researcher, following her extensive advocacy work. She shared, “This project represents hope. The hope that my work can help to increase awareness about intersex/variations of sex characteristics, the hope that I can spend time with people who are interested in the same things that I am, and the chance to make a small difference that means what I do is worthwhile in the real world for real people.”

“I hope that the results of this research will help to create a world where intersex is understood and people with variations in their sex characteristics have a free and open future to decide for themselves when, how and if they engage with medical and/or surgical interventions,” Dr Ní Mhuirthile continued.

INIA presents an opportunity for encouraging people to engage in conversations which, for too long, have gone unheard. Graduate certificate in sexuality education and sexual wellbeing programme chair and assistant professor in sociology and sexuality studies, Dr Mel Duffy, said the aim was to, “not only shine a light into the shadows of the unknown for the majority of the population to expose the reality of living for intersex people, [but also] to blowing open, so to speak, the medical practices that render people vulnerable to be ‘done unto’ without consent of consultation. The real success for me is when people feel that they are seen, acknowledged and that they too exist, seeking equality and social justice.”

With such an inspiring and dedicated group of researchers standing behind this international research network, advocating for crucial changes, this paves the way towards a future where intersex people and those born with variations in their sex characteristics but who do not identify as intersex, are heard.

After years of silence and stigma around their lived experiences, this initiative offers hope for greater inclusion, recognition, and for their voices to be heard across all areas of society.