No longer invisible: A conversation with Intersex Ireland

The Irish organisation supports intersex people all over the country. Here, some of the members share a conversation on their own experiences.

Four Intersex Ireland members smiling while holding an intersex flag

A small group of individuals have come together to form a new organisation called Intersex Ireland – a group set up to support intersex people and their families, educate wider society, and advance the rights and equality of all intersex individuals across the country. 

Definition: “Intersex people are individuals born with any of several variations in sex characteristics including chromosomes, gonads, sex hormones, or genitals that do not fit the typical definitions for male or female bodies”.

It’s believed 1.78 % of the population have an intersex variation, and, as a result, there are many variants that few people in Ireland consider. Intersex conditions – that someone isn’t typically male or female – can emerge at different life stages. Intersex variations can be evident at birth or perhaps can become evident in adolescence, as an individual’s body doesn’t develop as expected. It is not unusual for variations to become clearer in later life either. 

Traditionally, even before birth, parents want to know the gender of their child – whether it’s a boy or a girl. Friends and family consistently ask if the parents know the gender. When a child is born and there’s this ambiguity, doctors have often been quick to intervene in order to fit the child into the gender binary. This can result, later in life, in people’s intimate lives being negatively impacted because of complications. 

There is a lack of knowledge and education in society on intersex issues and only a handful of activists, such as Gavan Coleman, have been working in this area. Intersex Ireland has been set up to support Gavan’s work, support our community and advocate for our rights.

Sara informs us that, “There is so much work to do. Intersex people have been consistently marginalised. Our stories have been side-lined and shared in hushed tones. Parents are told not to expose our variations; doctors often medically intervene and society consistently shames us for who we are. Human rights violations continue in Ireland today. We need it to stop.”

Clara shares her story: “Before they even brought me home from the hospital, my parents were told that I had an intersex condition. Of course, this being Ireland in the ‘90s, they actually told my parents I had a ‘syndrome’, that it was nothing to worry about, they should simply raise me as a girl and ‘keep an eye on things’. Throughout my childhood I had countless medical interventions, so much poking and prodding I can’t even quantify it. It’s only in my 20’s that I’ve developed the courage to question my doctors. Nowadays, I hold them to account for mistakes that were made in my treatment, which have gone on to provoke gender dysphoria. I am more comfortable in insisting that they respect my bodily integrity and autonomy.”

Olive explains: “When Intersex Ireland was set up, I found that the support there is great. I can talk about these issues with other people who understand. Because I can talk about things, I find it easier to deal with the challenges that my intersex condition presents. There is a lot of genuine care in the group. Intersex Ireland has helped to give me the courage to come out. Since I told my friends they have been very supportive. I feel very lucky to be a member.”

Adeline had a difficult experience: “Early on I became aware of my mother’s revulsion toward me and my father’s shame. I learned too that going to the bathroom for me was different. Surgeries had left me unable to urinate, and instead of follow medical appointments, I received instead pounding on the door, recriminations and interrogations as to ‘what is really going on in there?’ Learning early to ‘pinch it off and hold it’ lead to a lifetime of kidney issues.

I found out where the scar tissue on my genitals was from due to my father sneering that I’d ‘never be a real man, you weren’t even born with a real willy, doctors had to make you one!’ followed usually by a chorus of Monty Python’s The Lumberjack Song.”

Jessica’s story is very similar to the stories of others in the community. “Intersex people are hidden and invisible, so at first, all we have are feelings – a feeling that something is not right, a feeling that something is different at a biological level. In my case, I did not ‘grow up’ like other girls (or boys). I looked 13 years-old when I was 18.

“As a result, I was not conforming, which lead to bullying, in my case bullying and rape. I also know other people who were bullied in school, where children asked them to show their genitals. I know people who were abused by doctors, who presented an exposition of their genitals to medicine students.”

Timara shares her own story: “People often ask what it was like to be born intersex. And I reply, what’s like to not be intersex? I have nothing else to compare it to. No reference but my own. ‘But how has it affected you? Your life?’ ‘I don’t know,’ I lie. For how can I not know?

“The biggest impact of being born intersex is a sense of loss, from the first moment of self-awareness to now. I was born alone, unwanted. My mother denied my condition to herself, to my father, to the world, consciously or subconsciously rejecting her baby’s difference, fortunately preserving our secret, sparing medical disfigurement but at the expense of the primary relationship.

“It was a different time then. But rejection – that’s the story of me.”

Sara explains her own background: “I found out much later in life. I didn’t realise I had been living with my own condition for my whole life. I knew something was different but I hadn’t been told. I could never accept my anatomy as it was. Through transition and the various medical tests and medical interventions that came with it, it all became clearer. It explained so much about my past, about my body. My hormone, chromosome and internal organs didn’t fit with typical male anatomy. But there is so much I will never know. There are no records, no one to ask. Who knows what my life might have been if I had of known?” 

Olive shares her story: “I have extreme Poly Cystic Ovarian Syndrome (PCOS). I found it an incredibly difficult syndrome in my teens and 20’s.  I have very high androgens (male hormones) levels. As a result of the androgens, I had very bad facial hair. If I ate normally, I would be obese. A part of PCOS is being insulin resistant, so, I am on a food plan.

“For me, regardless of what fertility treatments I have, I am infertile and can’t have children. I also sometimes have mood swings. I had to deal with no support from any official organisation. I felt very alone. The only person I told was my partner.”

Jessica continues: “Then, you find out. It could mean 20, 30, or 40 years of pain. For me, it was a moment of being angry, sad, hateful. But also, a moment when everything ‘clicked’, making everything clear, and this sense was amazing. Finally, you start looking at this mix of genetics and biology, and a sense of completeness that doctors have taken away from you. You find other people like you, other brothers, sisters, siblings that want to make the world better, that want younger people to not suffer what you did and your heart soars knowing that together we are stronger and that you are not alone anymore.”

Even knowing isn’t always the end as Addy explains: “My genitals weren’t the only part of me that were Intersex apparently. For most of my life I battled severe depression and sleep disorders that made school almost impossible. I’d associated my severe depression and history of suicide attempts with the rejection, humiliation and beatings I experienced as a gender binary-non-conforming child (as much as I tried to get it ‘right’ I always fell short), but accessing HRT decades later addressed my sleep issues and most of my depression.”

Clara agrees. “It was only when I was around 18 that I discovered that my ‘syndrome’ fell under the umbrella term of intersex, meaning there were other people like me. There was a community to find, advocacy to do. I reasonably quickly had the resources and support I needed to become an activist.” 

Sara adds: “So many of us struggle with not understanding. We do not know what is different. Nobody is willing to explain and so we go through life feeling alienated, outside and very different. Many of us struggle with medical problems as result of early life interventions or by untreated complications.”

Timara sums it up: “Intersex Ireland is an invaluable resource which I hope will be accessible to every intersex person in Ireland at every stage of their life. It is available to parents and families of intersex people, particularly those most vulnerable when they’re told their child is intersex and their only point of information is the hospital and doctors who may or may not recommend corrective surgery in an attempt to ‘normalise’ their baby. I hope Intersex Ireland will be there to offer help, reassurance, education.”

Timara reiterates, “Nobody should have to endure a life of unwarranted, non-consensual medical interventions, and a life of secrecy and rejection through the ignorance of others. It is a different time now. I hope.” 

Intersex Ireland can be contacted at [email protected].

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