Women with "atypical" sex development challenge the boundaries of normality

Thousands of girls discover in their teens that they have an “atypical” sex development, maybe missing an x chromosome or a part of their genitalia. By adapting – and by resisting – they confront the norms of female embodiment.

This is what Lisa Guntram of Linköping University shows in her doctoral thesis doctoral thesis “Ambivalent ambiguity?” In the thesis, 23 women who realised in their early teens that they had “atypical” sex development give their story. They talk about how they try to live up to their norms, and the norms of the world around them, for the female body. This consists, for example, of hormone treatment, genital reconstruction, and treatment of infertility via womb transplant or egg donation.

The thesis also shows how the women subsequently begin to challenge what they had hitherto taken for granted or viewed as desirable.

Lisa Guntram“They juggle with two opposing approaches. On the one hand they adapt. On the other hand they also question the boundaries of what is considered normal for the female body, and often describe how in their daily lives they try to broaden those boundaries so that their own specific circumstances can fit in,” Ms Guntram says.

The women interviewed share their experiences of constantly encountering normative perceptions of femininity, like the strong cultural connection between femininity and specific physical development, but also the view of penetrative vaginal sex as a given in heterosexual relationships.

“They talk about situations that are sometimes downright absurd. From sex education at schools that rarely deals with the fact that not everyone is the same, to encounters with the well-intentioned medical desire to make things right.”

But at the same time, many of them describe how they have received understanding and support from those around them. The majority of those interviewed have had sexual relations; even if their bodies have made their relationships with others more difficult, they stress that their bodies have rarely stood in the way of a relationship.

There are also accounts that question the idea of medical reconstruction of sex organs, for example creating a vagina on order to permit intercourse. Ms Guntram cites an example:

“ ‘Maybe not everyone wants that kind of sex?’ one woman wonders - ‘and then what’s the point?’ ”

The women interviewed represent, as a rough estimate, a group of around 3,000 Swedish women.

They may have Turner Syndrome, whereby they only have functioning x chromosomes or no functioning ovaries, which led to them being given hormone treatments to induce puberty. Or they are lacking one or more parts of their sexual organs, have had treatment to create a vagina and might need a womb transplant in order to become pregnant. These women often do not even know what their condition is called.

“A diagnosis becomes an important support mechanism when the women look for knowledge and contact with others in the same situation. ‘I don’t even have a name to Google,’ recounts one woman - and not only does it create understanding of their own bodies but also the opportunity to talk about their bodies with other people,” Ms Guntram says.

Thesis: Ambivalent ambiguity? A study of how women with ’atypical’ sex development make sense of female embodiment. Lisa Guntram. Linköping Studies in Arts and Science No.633. Dissertations on Health and Society No.25