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,” remarks Surya Monro, a professor of sociology and social policy at the University of Huddersfield, United Kingdom.
With the support of the EUICIT project, undertaken through funding from the Marie Skłodowska-Curie Actions programme, Monro, along with Daniela Crocetti and Tray Yeadon-Lee, 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 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According to Monro, outdated ideas about gender are at the root of this medical abuse.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 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, 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,” adds Monro.
An opportunity to enhance diversity
Despite there being differences of opinion between parent groups, patient advocates and intersex people, 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,” says Monro.
According to Monro, 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,” concludes 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 country’s National Health Service (NHS) to propose withdrawing public funding for childhood surgeries carried out for gender-normalising purposes.
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.