Intersex: ‘They decide a gender for you and that’s it for your whole life’

“My gender was chosen for me,” says Adeline Berry, originally from Tallaght, Dublin. “I was born in 1971 and I was an ambiguous baby. They took my 5lb body, measured my genitalia and then they decided I’d be a boy. They rerouted my urethra and sculpted my genitals on a 5lb baby.”

Adeline’s body did not present clearly male or female genitalia at birth and the decision was made by her parents and doctors to perform surgery to sculpt a penis on her body. “They decide a gender for you and that’s it for your whole life,” she says. “I grew up being told I was an abomination.”

Intersex, is actually an umbrella term, used to describe people whose sex characteristics don’t align in the way we traditionally think of male and female,” says Dr. Tanya Ni Mhuirthuile, Assistant Professor of Law at DCU.

“An intersex person may have some male traits and some female traits and this can happen in lots of different ways. It can be someone who appears externally as female but has internal testes instead of ovaries, or a person who appears male but has testicular and ovarian tissue. It can happen at the hormonal level, chromosomal level or at the sex organ level as well. There is no one intersex condition and intersex also occurs in the natural world. There are intersex fish, mammals and flowers.”

As a result, Tanya and her colleagues at DCU began the Intersex Mapping Project, to outline the experiences of Irish intersex people. “This project is trying to provide that baseline information,” says Tanya. “We are trying to talk to intersex people, to their families and the healthcare professionals who look after them. We just literally ask people to share their stories; The Preamble the UN Declaration of Human Rights says all persons should be treated with dignity and respect,” she says.

Intersex persons, of course, should be no different.

Adeline has suffered severe physical and mental health difficulties as a result of her treatment as an intersex infant, but not all intersex persons have the same experience or even find out that they are any different to the rest of the population.

“It’s not always apparent immediately at birth,” says Tanya. “Sometimes it’s discovered at puberty if a girl doesn’t get her period for example. Sometimes when a couple goes for fertility treatment, then this is discovered. There are people who get all the way to the autopsy table and don’t ever know!” she says.

Tanya also underlines that it is not the fact of being intersex, but the response of families and communities that can be detrimental to a person’s health.

“Some people get on with it better than others depending on how they are told. Whenever it’s uncovered for a person that first conversation about what’s going on is really important. It’s the same when you talk to anyone about any kind of diagnosis. If you’re told this is a disaster, this is a crisis, this is the end of the world, that’s how you’re going to react and it will colour your interaction with this issue forever.

“The intersex people I’ve met, some of them were raised in homes where it’s no big deal. Most of the hurt seems to come from the sense of shame and stigma and secrecy. People are doing medical interventions in order to hide a thing.”