All About Intersex.
Well, not all. In fact, this is just the beginning.
Intersex is an umbrella term used to describe a range of natural variations in the human body - specifically, the innate variations in someone's sex characteristics (VSC). Sex characteristics can include everything from hormones and chromosomes to internal and external anatomy. When someone has an innate variation of sex characteristics, this means that there are atypical traits present.
People with intersex traits have always existed, but there is now more awareness about the diversity of human bodies.
There are up to 40 different innate variations of sex characteristics known. People with an intersex variation can be born with visible differences, or these may become apparent in puberty or identified later in life.
While intersex is often used to describe a wide range of natural variations of the human body, many people with an intersex variation may not use the word intersex, or even know that the term is available to them to use.
There can be multiple hurdles or barriers when trying to understand if someone has an intersex variation.
A common term used in healthcare settings is 'DSD' (meaning differences of sex development). Historically the 'D' had stood for 'disorder'. We don't recommend using this term, but understand that for some people, that is the only language they have been given, and if it fits right for them, it's important to respect that.
Sometimes intersex variations are framed as "conditions". We advocate for the term variation to be used instead.
Healthcare professionals use particular medical terms for each variation type. The list to the right of this page incudes some of the medical terms used for intersex variations.
The word intersex was used in the early 19th Century in medical spaces. This was later reclaimed by activists in the 1990's to replace the term hermaphrodite. *
Some of the more common VSC include:
Androgen Insensitivity Syndrome:
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Complete (CAIS)
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Partial (PAIS)
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Mild (MAIS)
Clitoromegaly
Gonadal dysgenesis
Congenital Adrenal Hyperplasia (CAH)
Hypospadias
Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH)
Ovotesticular DSD (Ovotestes)
Swyer Syndrome (Complete Gonadal Dysgenesis)
Turner Syndrome (XO Syndrome)
5-alpha reductase deficiency (5-ARD)
17-beta Hydroxysteroid Dehydrogenase 3 Deficiency (17 beta or 17-beta HSD)
* While some people with lived experience have reclaimed the term hermaphrodite, it is widely thought to be offensive and incorrect for endosex people to use. We do not recommend using this term unless you have an intersex variation.
Many intersex people don't know that they're intersex
Imagine if you had only ever heard your variation being spoken about in one of the medical terms shown above.
How would you know that you were part of a much larger community? One that celebrates diverse bodies and provides a chance for acceptance, community and connection?
What if you were encouraged by your healthcare professionals and caregivers to just keep it private?
Many intersex people have been told that they will never meet anyone else like them.
"My doctor told me that I shouldn't bother trying to connect to others, that my condition was so rare. That was so isolating, and I look back now and think, he was so wrong!"
Some people may not know they have a VSC because they were very young at the time of medical diagnosis and interventions, and it has been kept from them as a form of protection.
Parents and health professionals sometimes consider "normalising" surgery as the best way to protect those with intersex variations from bullying and social stigma. These "normalising" surgeries occur to ensure that the child's body conforms to social standards of what is seen as normal.
There can be spiritual, mental and whānau impact from 'normalising' surgeries.
We know from lived experience that more than just physical scars remain.
Ira tangata
The term intersex has become synonymous with activism and a resistance against the medical pathology of diverse bodies, and the social drivers of "normalisation".
It is important to note that much of the language used to describe variations of sex characteristics has been informed by western medical and legal thinking.
Here in Aotearoa, Māori and Pasifika cultural understandings and language need to be part of the conversation.
Takatāpui* is a te reo Māori word that has been expanded to include diverse sexualities, gender identities and sex characteristics in modern te ao Māori ideas.
Now in 2022, the term ira tangata is being used to discuss intersex in a te ao Māori context.
*Historically takatāpui has been used to describe someone who is attracted to the same sex.
Māori and Pasifika relationships to sex characteristics, gender expression and sexuality were actively suppressed upon the arrival of colonial & religious doctrines.
Many tangata whenua communities are connecting to pre-colonial wisdom that realigns their bodies and experiences with
their culture.
The expansion of the terms takatāpui and ira tangata to include diverse sex characteristics honours not only the past, but also an emerging future.
Decolonisation
The 'I' in LGBTQIA+
Intersex is the 'I' within the LGBTQIA+ movement; otherwise known as 'the Rainbow' in Aotearoa.
The LGBTQIA+/rainbow community includes all those with diverse sexual orientation, gender identity & expression, and sex characteristics (that's intersex people!).
Those with an intersex variation, just like endosex* people, may or may not identify as having a diverse sexual orientation or gender identity.
*endosex = to have innate sex characteristics that are deemed "typical".
In fact, current findings show that the majority of people with an intersex variation identify as cisgender (the sex they were assigned at birth) and as heterosexual.
It can be daunting coming to terms with all of this diversity. What helps is understanding the differences between sexual orientation (who you're attracted to), gender identity (the gender you identify with) and sex characteristics.
When intersex people are assigned a sex at birth or through surgical interventions, this may not align with their gender identity, meaning that they may seek gender-affirming healthcare later in life.
Gender-affirming healthcare can mean accessing support through medical services, so your body can represent how you feel on the inside. These needs are different for everybody.
So, if intersex is a natural occurence....what is "normal"?
What is most important is providing individual choice, cultural care and bodily autonomy.
Medically-unnecessary surgeries on infants, young people and adults are still common in Aotearoa's hospitals today.
But how did we decide which bodies are normal and which are abnormal?
Where have these ideas come from? And who got to have their say?
What is it about diverse bodies that makes us so uncomfortable?
And why is it that a social stigma issue being deemed as a health emergency?
It's important that we all understand what motivates healthcare providers to encourage 'normalising' intersex bodies, and why they seek to apply a medical framework (pathologisation) to intersex care.
Intersex Aotearoa believes in bodily autonomy and informed consent. These concepts not available to infant and young person, and often in medical settings, even adults cant access these because many layers of the social stigma and discrimination of diverse bodies (intersexphobia).
If an individual feels like the best thing for them is to be supported through accessing surgical interventions, thats awesome. It's the process that gets someone to that decision, that is so vital.
While there are a fraction of intersex variations that come with complications that do require life-preserving surgical interventions, many do not.
Bodies are all different, and we believe that intersex bodies are just another form of diversity that needs to be celebrated.
"Shouldn't we be changing our social standards of "normal", rather than forcing intersex bodies to change with surgeries?"
Intersex Variation Glossary
For a deeper dive into a wide range of Intersex Variation's, InterACT has produced this helpful glossary!
This glossary was created to provide people-centered, educational definitions about a wide variety of intersex variations and how they can manifest in people's bodies.
We would like to acknowledge interACT and their on-going youth-led work.
