Intersex/Variations of Sex Characteristics (I/VSC) refer to people born with biological sex characteristics that are different to what is typically considered male or female. For example, they may have different genitalia, hormones, chromosomes, and/or gonads (reproductive organs e.g. testes/ovaries).
There are more than forty recognised ways that people's bodies may vary or be considered intersex. For example: a person may be born with
· Hypospadias - where the opening of the penis (typically located at the tip) is located on the side or underside
· Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH) - characterised by the full/partial absence of the female reproductive system. [Learn what this means for intersex person, Julian Peter our go to the Personal Stories section on our Resources page to learn about the stories of Esther Morris Liedolf and Joaneva.]
These are just two examples of how a person might be born different.
The United Nations estimates that between 0.05% and 1.7% of infants are born like this – almost as common as having red hair. Being intersex/having variations in one’s sex characteristics is a natural difference that occurs among humans. Read the United Nations Intersex Fact Sheet to learn more.
Difference in a person’s sex characteristics do not ordinarily impair a person’s life or physical health. However, medical/surgical intervention on babies’ and children’s bodies has become commonplace so that they can appear and be identified as either male or female. Very often, this medical/surgical intervention is unnecessary and potentially harmful for the person as they grow and develop. For example, after a baby is born, doctors may find it difficult to tell if it is a boy or a girl due to differences in how their genitalia may appear. Sometimes, in addition to other factors/medical tests, a decision will be made to ‘assign’ the baby as either male or female. Surgery takes place to arrange the genitalia accordingly. That baby is then reared according to its assigned/surgically altered sex.
There have been cases where the ‘wrong’ choice was made by doctors and parents and the child may have suffered as they have grown through to adulthood. Some intersex adults regret that unnecessary surgery was performed on them as a child - this happened to Sean Saifa Wall, watch this short report where Sean talks about this and speaks with the doctor who removed his testes.
There are two important things to consider about this type of unnecessary medical/surgical intervention:
(1) in almost all cases a baby or child does not consent to having their body subjected to such surgery/intervention and
(2) the child’s right to bodily integrity. Considering the issue in this way demonstrates that intersex children’s rights and their bodies should be protected.
Intersex is more than a medical issue - it's a human rights issue
In other cases, people may not learn that they are intersex or have variations of sex characteristics until they are teenagers, or even older since there are numerous ways being intersex/having variations of sex characteristics, manifest themselves. To offer another example, a baby may be born with what appears to be ‘normal’ genitalia and no questions or concerns may arise about their sex development until they are in their late teens when delayed puberty or short stature may prompt medical assessment that might reveal a chromosomal diagnosis.
Michaela Raab, a german intersex person, asked doctors why she had not yet had her period by age twenty. She was 'treated' with hormone replacement therapy and underwent surgery on her "oversized clitoris". But doctors never told her that she had XY chromosomes. Years later, Michaela engaged in legal action against the doctors through the German courts - she claimed if she knew she was 'genetically male' (XY chromosomes) she may never have agreed to the 'treatment'. While doctors claimed they were acting according to best practice at that particular time (mid-1990s), a serious question requires consideration - should Michaela and other intersex people be fully informed about their bodies by the medical profession who are working with them? Not informing people with the information prior to interventions (hormone treatment/dilation/surgery) is not-best practice. In fact, it is wrong. This is one example that demonstrates why intersex issues are human rights issues.
To summarise, being intersex or having variations of sex characteristics, are ‘umbrella’ terms for the many ways in which human bodies may differ. It is a complex
Public awareness about being intersex or having a variation of one’s sex characteristics is limited and traditionally being intersex was clouded in secrecy, shame and discrimination. Many people may not realise that the ‘I’ in LGBTQI represents intersex. Because there is such limited knowledge out there in the public domain this contributes to the burden of secrecy and shame which often fuels the need to intervene so early on babies’ and children’s bodies.
As a society, we often forget how much life and society is organised by gender. Babies’ clothes, toys and accessories are designed and coloured according to gender – blue for boys, pink for girls. We have all-girls and all-boys schools and sporting teams. Usually birth, marriage and death certificates require one box to be ticked – either male or female. Passports, driving licences and most ID cards also require a male/female box to be ticked. Imagine how difficult it might be to change your sex/gender on your birth certificate? Intersex people have often experienced this barrier. Or imagine being an adult and realising that every birthday card you ever received throughout your life did not actually match the ‘real you’?
We may forget how much gender matters. But gender really does seem to matter when a baby is born – and this goes some way towards explaining why so much unnecessary intervention was and continues to be carried out on babies and children and never talked about. Even as adults, treatment options and experiences can still be difficult. There are many intersex people out there whose life stories have never been told due to fear, shame, stigma and secrecy. Consequently, society has no idea about the lives they, and indeed their families have lived, the experiences they have had and what would have made their lives easier and better – either from a personal, social or legal perspective. By telling Ireland's intersex story, this is how we expect our work will make a difference.
Help us learn more and make a positive change!
This video was created during OII Europe's Second Intersex Community Event and Conference in Copenhagen in February 2018.
Text by Mathilde and other participants of the Community Event. Narrated by Mathilde.