Intersex FAQs

We've put together some frequently asked questions that offer a brief overview about what intersex is, including a note about 'Intersex & Gender Identity" and why language and words matter when we speak and write about intersex - even 'as gaeilge'.

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 issue requires consideration - Michaela was not informed about her intersex body by the doctors who 'treated' her.  Not informing people about their bodies and proposed treatment, 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.    

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.

Filmed and edited by Irene Kuzemko. https://oiieurope.org/ https://www.facebook.com/oiieurope

 

 


Intersex and Gender Identity

DID YOU KNOW 

The 'I' in LGBTQI+ is Intersex but not all intersex people identify under the LGBTQI+ umbrella. 

This paragraph from our friends at Intersex Human Rights Australia is a great explainer...

All available information suggests that intersex people have diverse identities. Many intersex people are heterosexual, while many are not, and most intersex people identify with sex assigned at birth (sometimes termed cisgender). This discussion about identities can obscure a deeper issue: because intersex is about physical characteristics, it includes infants and children who do not have agency to express an identity. Care needs to be taken to acknowledge this when talking about intersex people.


Why words matter

Language is powerful - knowing the right words to use when talking to someone, or talking about them, is not only respectful, it can also be empowering.  However, incorrect language use can be harmful and hurtful because it can cause stigma and shame.

FACT

Intersex refers to a difference, not a deformity 

Intersex is a word we use - a lot. 

Intersex is an umbrella term that includes the many ways that the human body's sex characteristics may vary - it reflects "biological diversity" (IHRA, 2009)

In some instances we say people with Variations of Sex Characteristics (VSC) and at other times we use the words people with Atypical Sex Characteristics.  But intersex is the word/term we use most.    Using the proper language when we talk about people, their bodies and their experiences is very important to us and we are committed to speaking and writing about intersex as respectfully, and correctly, as possible.      

As our attitudes, thinking and knowledge changes, our choice of words and use of language should too.  Our friends at interACT - Advocates for Intersex Youth explain why some terms that have been used in the past were problematic.  

Is intersex the same thing as being a “hermaphrodite?”

No. “Hermaphrodite” should never be used to describe an intersex person. Some intersex people have reclaimed this word for themselves, but it is usually considered a slur. There are many ways to have an intersex body, but it is not possible for one person to have both a fully developed penis and vagina.

The “h word” comes from mythology. It might suggest that intersex people are monsters, or not of this world. Many intersex people still see this slur used in their medical records.

Is intersex the same thing as “Disorder of Sex Development?”

“Disorder” or “difference of sex development” (DSD) is still a common medical term for intersex traits. Many intersex people reject the term “DSD” because it supports the idea that their bodies are wrong, or up to doctors to “fix.” Advocates in the United States often bring up the fact that until 1973, being gay was considered a mental disorder. Many natural human differences have been framed as medical problems, until communities fought for acceptance. interACT generally does not use the term DSD. See interACT’s statement on DSD terminology.

 


What is intersex in Irish?

Intersex as gaeilge = idirghnéas

Our PI, Tanya Ní Mhuirthile contributed to An Foclóir Aiteach/The Queer Dictionary

It was a collaboration between the Union of Students of Ireland (USI), Transgender Equality Network of Ireland (TENI) and BelongTo (LGBT youth organisation).

It was launched in DCU in March 2018. 

This is a wonderful resource not just for the LGBTQI+ community but also for the Irish speaking community everywhere.  A full PDF version of An Foclóir Aiteach is available here. 

 


Intersex and Diverse International Experiences

We are acutely aware of the fact that being intersex is a diverse experience within and across global societies and cultures.  We appreciate that many commonalities are shared within the global intersex community such as a committment to human rights and a belief that intersex surgery for cosmetic/cultural reasons should stop. 

We are also aware, however, of the nuanced experiences that intersex people have and how these may be defined by different cultural contexts.  Being intersex in one country may be profoundly different compared to being intersex in another, especially when issues such as oppressive political regimes are considered or in countries where women's and children's rights are contested. 

We respect the diversity of the global intersex community, in fact we see it as a strength and a powerful force that can be used to effect change.  We believe our learning becomes richer when it is infused with multiple perspectives - each should be equal.

Click here to listen to, and watch, Joaneva from Nairobi talk about her experience of being intersex in Africa 

I was literally told 'You're shaming us by going public.  Push this aside'.  Being a woman with MRKH in an African setting is almost like a death sentence.  Basically, you're a nobody unless you can bring a child into this world.  I was lucky that I met a doctor who said 'Let's do an ultrasound'.  Otherwise, I would never have found out.

Developing our website is an ongoing endeavour and we will add more material about international perspectives soon.  We'll let you know on Twitter.