FAQ
General Questions:
What is intersex?
Intersex is physical differences in sex.
They are differences where a person may appear to have features typical of both a male and a female, where a person may not be fully male or female or where a person is neither male nor female.
Intersex may also be differences in sex that science has yet to describe.
What causes intersex?
The search for the things that causes intersex has lead medical practitioners to treat intersex differences like a sickness. OII Australia disagrees with this approach and holds that intersex is one of a number of physical differences in the spectrum of all the differences that are humanly possible.
Medicine and sometimes science (the two are not always the same as science requires the use of the scientific method, something medicine is reluctant to do with intersex) have decided on a number of diagnostic categories that lead to intersex. OII knows from its membership that not everyone who falls within one of these categories is intersex. OII is also aware of other intersex differences that medicine does not recognize and many that it does that it does not fully understand.
Some common diagnoses that may lead to intersex are:
- 5-alpha reductase deficiency
- Androgen Insensitivity Syndrome (AIS)
- Aphallia
- Clitoromegaly
- Congenital Adrenal Hyperplasia (CAH)
- Gonadal dysgenesis, partial or complete
- Hypospadias
- Kallmann syndrome
- XXY, sometimes refered to as Klinefelter syndrome
- micropenis
- mosaicism involving sex chromosomes such as XX/XY, XXY/XY, XXY/XX. Mosaicism means some cells in the body a have different genetic make up than others. For example some cells might be XX and others XY. Most XX individuals are mosaic as they express either their mother’s or their father’s X chromosome, randomly, throughout the body. Only one X chromosome is ever fully expressed in humans; any others are mostly inactive.
- MRKH (Müllerian agenesis; vaginal agenesis; congenital absence of vagina)
- Ovo-testes, formerly called ‘true hermaphroditism’.
- Partial androgen insensitivity syndrome
- Progestin-induced virilization
- Swyer syndrome
- Turner syndrome
- 17-beta-hydroxysteroid dehydrogenase deficiency
- Cryptorchidism
What do intersex differences look like?
You may or may not be able to see intersex differences by simply observing, even if you are a trained physician.
Physical differences can be in external anatomy such as genitalia, breasts or build. Most people who have intersex diagnosed at birth have differences that are easily visible. For these individuals they often include different looking external genitals – penis, scrotum, vulva, pudenda.
Most intersex is not visible to the eye and is caused by other physical features such as internal reproductive parts, hormones, and chromosomes. Most intersex is not detected at birth.
How do people find out they are intersex?
People find out they are intersex in one of four ways.
- At birth because they are physically different. However a child who is born physically different might not find out until they are much older because doctors and parents often conspire to keep intersex a secret from their community and from the child.
- As a teenager when puberty fails to take place or happens differently.
- As a young adult when fertility is a problem.
- Serendipitously (by chance).
Two events stand out as ways that people discover they are intersex by chance.
- Paternity and less commonly, maternity testing. When the biological parent of a child is in question and the mother and father have genetic tests those tests may reveal either the mother, farther or child has a genetic variation that can be seen as intersex.
- During so called ’sex reassignment surgery.’ Sometimes a person who has struggled with their assigned gender (see sex and gender assignment) and is given a diagnosis of Gender Identity Disorder goes on to seek surgery as a transsexual. During that surgery it is often discovered that the person has intersex differences.
Are all people with these differences intersex?
Not everyone who has a difference that might be seen as intersex thinks of himself or herself as intersex and they might strongly object to being thought of as that. OII Australia, unlike the medical profession, does not force identities or labels on anyone. OII Australia holds that for many intersex the first violation of their rights is the forced ‘gendering’ of newborn intersex and the reinforcement of gender binary labeling during their childhood. OII Australia holds that every person has the right to choose how they describe themselves. This is not a matter of identity politics – it is a matter of human rights. People do not have to call themselves intersex simply because they are thought to be so by others.
Sex and Gender:
Isn’t gender just another way of saying sex?
One could be forgiven for thinking so given the confusion surrounding the use of these terms in the media, amongst politicians and with social commentators.
Sex:
From the Latin – sexus, the condition of being male or female.
Are the physical parts of a body that make one male, female or something more than either of those?
Primary sex parts include things like ovaries, testicles, penis, uterus, vagina, labia, pudenda and so on.
Secondary sex parts include things like breasts, build, hair distribution, and so on.
Sex terms are:
- Male – (also masculine) the sex that begets offspring from Latin – masculus.
- Female – (also feminine) the sex that produces offspring from Latin – femella.
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Intersex – The appearance of having characteristics of both male and female from the German Intersexe. Intersex was introduced by Goldschmidt. R (Endocrinology.1917; 1: 433-456) following his studies of sex differentiation, especially amongst insects. Goldschmidt used the Latin root inter: between or amongst and sex.
From Goldschmidt’s paper “*We have proposed the use of the terms intersexe, intersexual, intersexuality instead of sex-intergrades because the former terms can be used in all scientific languages, whereas the latter must be translated, e. g., Sexuelle Zwischenstufen in German.”
What about ‘man’ and ‘woman’?
Well, they used to be terms that described one’s sex as well as one’s social position, especially the term ‘woman’.
Females have always been afforded a surfeit of pronouns and nouns so men can be sure of their availability. Woman makes the distinction between girl or maid as one being married to a man in the former case and a young si female or a single female in the latter case.
Woman is peculiar to English coming from the old English ‘wifman’, being the wife of a man and rounded off in late old English to ‘woman’. All these became ‘gender’ terms in the 1950s because of the work of the late John Money and second wave feminists.
Gender:
Gender used to mean parts of language such as the pronouns he, she and it. That is, masculine, feminine and neuter. From the Latin gener – genus.
A New Zealand psychologist and second wave feminism changed all that in the mid to late 1950s.
John Money proposed that infants up to a certain age were unconditioned and could be brought up as either a boy or girl irrespective of their physical sex. He made a distinction then between one’s physical sex and one’s social role. Social roles then became ‘gender’ and separate from one’s sex although they were usually congruent, so that males were men and boys, and females were women and girls.
Money supposed that if one were of indeterminate sex, irrespective of genes, hormones or physical appearance, the social conditioning would make the child into someone comfortable in the role of man or woman, boy or girl. His theory of social conditioning included very early surgery so that the child’s anatomical sex matched the assigned gender and later medication so the pubescent child would develop the secondary sexual characteristics of the assigned gender. The subject was to be kept in ignorance of the circumstances of their birth lest the news cause them to doubt their gender and to save them from the insufferable suffering such knowledge was thought to bring.
John Money’s ideas were put in doubt by the famous John/Joan case. (See As Nature Made Him.)
The final destination of the meaning of gender has not been reached with theorists still constantly defining and redefining it.
When I write about intersex, what terms should I use?
To be respectful of intersex:
- Do not use the terms ‘hermaphrodite’ or ‘pseudo-hermaphrodite’ except when referring to outdated and inaccurate terms that are no longer used and are offensive to many intersex people.
- Do not refer to intersex as a ‘condition’ or a ‘disorder.’ This pathologizes (makes into a sickness) our differences.
- When you think of intersex, think of it as differences like skin colour or height. Just as a person is not ‘whited’ we are not ‘intersexed’; just as a person is not a ‘whiteual’, we are not ‘intersexuals.’
- Do not use ‘intersexed’, ‘intersexual’ or other terms that tend to make intersex an adjective or a verb.
- Intersex is always the preferred term as in “I am an intersex woman”, “I am intersex”, “I am an intersex man”, and so on.
- ‘Intersexed’ tends to indicate something has been done to us and that reinforces the notion of a condition or a disorder.
- Do not refer to intersex as ‘transgender’, a ‘gender difference’ or, absolutely the most insulting, as ‘gender benders’ as has recently been seen in the press.
- Intersex is about sex differences and not about gender roles.
- Please use difference, variations and words you might like to use when trying to describe your own unique qualities to the world. We are real people who can be hurt when articles are written about us as if we were a newly found species or the most recent arrivals from another planet.
- Some individuals come to their being intersex through ‘transsexual’, ‘transgender’, ‘hermaphrodite’ and other similar words or experiences, and retain those words as a part of the way they describe themselves as well as seeing themselves as intersex. OII supports every individuals’ right to describe themselves in whatever terms they are comfortable with.
The above guide is aimed at generalized comments on intersex and not at individual narratives.
Former content of this page:
We at OII Australia are often asked many questions about intersex, about what it is and what being intersex entails.
This page is where we will answer such questions.
Just so you know what is coming, here is a list of possible questions that Michelle O’Brien, OII-UK board member and academic, has compiled for our consideration:
- What is intersex?
- How common is intersex?
- What intersex conditions are there?
- Why does OII think children with intersex should have autonomy?
- Does OII think children with intersex should be raised without a gender, or in a third gender?
- What’s wrong with the way intersex has traditionally been treated?
- What’s wrong with DSD?
- Questions about OII…
- Can there be anybody left who hasn’t heard of intersex?
- Is a person who is intersex an hermaphrodite?
- Does having a Y chromosome make someone a man?
- Is intersex the same as “ambiguous genitalia?”
- Show me how intersex anatomy develops.
- What is the current policy of the American Academy of Pediatrics on surgery, i.e. the DSD guidelines?
- What’s the relationship between transgender or transsexual and having an intersex condition?
- What is the problem with gender?
- How can you assign a gender (boy or girl) without surgery?
- What evidence is there that you can grow up psychologically healthy with intersex genitals (without “normalizing” surgeries)?
- Does OII advocate doing nothing when a child is born with intersex?
- What’s OII’s position on surgery?
- Are there medical risks associated with intersex conditions?
- How can I get my old medical records?
- What do intersex and the same-sex marriage debate have to do with each other?
- Is David Reimer relevant to intersex issues?
- What’s the history behind the intersex rights movement?
- Why did OII came into existence?
- *** What are the following bizarre new words and phrases intended to mean and why do they exist at all if the word intersex means what it says and works perfectly well? – ‘intersexed’, ‘intersexual’, ‘intersexuality’, ‘intersexualism’, ‘people of intersexuality’.***
