Researchers perform innovative study on intersex experience

With the support of the EUICIT project, undertaken through funding from the Marie Skłodowska-Curie Actions programme, the University of Huddersfield’s Professor Surya Monro, with colleagues Dr Daniela Crocetti and Dr Tray Yeadon-Lee, has conducted innovative research on the intersex experience – research that could help decision-makers protect this long-marginalised population better

INTERSEX and Disorders of Sex Development (DSD) are two terms used to describe those born with sex characteristics (i.e., chromosomes, gonads, genitals) that do not fit the typical definitions of male or female bodies. It is estimated that one out of every 2 000 people is born with invisible or visible intersex/DSD traits.

But for many, intersex/DSD is less about anatomy and more about experience. “For me, intersex refers to the lived experience of the sociocultural consequences of being born with a body that does not fit within the normative definitions of ‘man’ and ‘woman’,” says noted human rights activist Miriam van der Have.

Unfortunately, for many intersex people, this experience is one full of potentially harmful surgical procedures, stigmatisation, discrimination and social exclusion.

“There is a pressing need for research that highlights the experiences, understandings and views of intersex and DSD people within a European context.”

Surya Monro, Professor of Sociology and Social Policy.

With the support of the EUICIT project, undertaken through funding from the Marie Skłodowska-Curie Actions programme, the University of Huddersfield’s Professor Surya Monro, with colleagues Dr Daniela Crocetti and Dr Tray Yeadon-Lee, has conducted innovative research on the intersex experience – research that could help decision-makers protect this long-marginalised population better.

The research was conducted in partnership with Zwischengeschlecht, an intersex activist organisation, which contributed important expertise on well-being and human rights.

Fact-based information on the intersex experience

One of the project’s most alarming findings was the number of irreversible, medically unnecessary surgeries still being done on intersex infants and children.

“We were surprised at the extent to which these problematic medical practices were still taking place,” notes Professor Monro. “This motivated us to work as hard as possible to provide policymakers, politicians and healthcare professionals with fact-based information on the intersex experience.”

According to Professor Monro, outdated ideas about gender are at the root of this medical abuse.

“Because sex variations are often framed as abnormalities, many parents choose to ‘fix’ their ‘abnormal’ children,” explains Professor Monro.

“Families may feel pressured to have these surgeries done in order to protect their child from social stigma or to conform with what they perceive as gender norms.”

Although some intersex people may need or want genital or other medical procedures, Professor Monro stresses that such a decision should be theirs and theirs alone.

“The intersex people who contributed to our research clearly indicated that legal changes should be made to stop intersex children from having cosmetic procedures done until they are old enough to make their own decisions about their bodies,” added Professor Monro.

An opportunity to enhance diversity

Despite there being differences of opinion between parent groups, patient advocates and intersex people, Professor Monro says there is widespread agreement on the need to provide intersex people with better care and support.

“One of the key takeaways from this work is the importance of involving people with sex variations in planning the policies and services that are provided for them,” said Professor Monro.

According to the Professor of Sociology and Social Policy, this includes providing better psychological support to intersex children and their families and ensuring that all care is tailored to the individual needs of the intersex person.

“Perhaps most importantly, we need our policymakers to start seeing sex variations not as a medical problem but as an opportunity to enhance our diversity,” concluded Professor Monro.

As to this last point, the project has produced a detailed report to help guide United Kingdom policymakers on the topic. This report appears to have influenced the nation’s National Health Service (NHS) to propose withdrawing public funding for childhood surgeries carried out for gender-normalising purposes.

intersex pride emblemThe intersex pride emblem

Researchers also published numerous articles in peer-reviewed scientific journals, two of which were co-authored by intersex people. An article published in the renowned ‘American Journal of Bioethics’ ranks among the top 10 most downloaded papers in the journal’s history.

Furthermore, the project has conducted over 26 presentations and four stakeholder workshops, along with organising a major international conference on intersex studies.

Much of the project’s work is now being extended under the auspices of the INIA project, which aims to support the next generation of scholars working in the field of intersex and sex variations.

Culture, Health and Sexuality – Special Edition

The team has also recently published a Special Edition of the journal Culture, Health and Sexuality. In it they address the need for much more to be known about intersex and variations of sex characteristics.

The Special Edition – titled ‘Intersex: cultural and social perspectives‘ – includes papers from several countries including Belgium, Germany, Israel, Italy, New Zealand, Switzerland, and the UK, with other papers providing an analysis of cross-cutting international concerns – including human rights and religious conceptualisations of sex characteristic variations.

It is edited by an international interdisciplinary collective which includes scholars with personal experience of intersex variations and those who do not.

By fostering an awareness of the need to protect the bodily integrity of infants and children with sex variations, discussing appropriate healthcare, and understanding particular topics such as parental decision-making and life experiences of young intersex people, many of the papers aim to be directly useful to improving the lives of intersex people.

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