The term intersex has been used in different ways by different people over time. It continues to be a term whose meaning is debated about today. The multiple meanings of intersex come in part from the fact that the word is used both by medical professionals to describe other people and by some people to describe themselves. In it's modern usage the word began to be used more frequently in large part because of a grassroots organization called the Intersex Society of North America (ISNA).
ISNA begins their definition of intersex as:
"a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male. For example, a person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside. Or a person may be born with genitals that seem to be in-between the usual male and female types—for example, a girl may be born with a noticeably large clitoris, or lacking a vaginal opening, or a boy may be born with a notably small penis, or with a scrotum that is divided so that it has formed more like labia. Or a person may be born with mosaic genetics, so that some of her cells have XX chromosomes and some of them have XY. Though we speak of intersex as an inborn condition, intersex anatomy doesn’t always show up at birth. Sometimes a person isn’t found to have intersex anatomy until she or he reaches the age of puberty, or finds himself an infertile adult, or dies of old age and is autopsied. Some people live and die with intersex anatomy without anyone (including themselves) ever knowing."
One reason the term is often misunderstood is that many people don't fully understand how sex is determined. At birth (and sometimes before birth via ultrasound) sex is determined by visual examination of the body. If a body has a penis we call it a boy, if it has a vulva we call it a girl. But sex is more than just external anatomy. Sex is determined by internal and external anatomy, as well as by chromosomes, and by hormones. So when a baby is born the sex it is assigned may not be the full story, as the assignment is based on only one aspect of sex.
Tricky Language: Is it a Condition or an Identity?If you read medical literature you will find the term intersex being used as a condition, or you may read the term "intersex conditions" being used to describe a variety of what are called chromosomal abnormalities. But you may also have noticed that the term intersex is sometimes added to the list of marginalized sexual identities like gay, or trans* or queer (you know, the LGBTIA, etc...).
There is no agreement on this issue. The OII Intersex Network, which describes itself as the world's largest organization of intersex people, state clearly on their site that the term intersex is not an identity, but rather is an umbrella term used to describe differences in sex. The fact that "I" for intersex gets included in the list of initials LGBTIA, etc... may not reflect the experience and input of people whose bodies have been identified as intersex or who use that word to identify themselves.
At the same time there are individuals and groups of people who identify themselves with the term intersex and have found the label intersex to be helpful for them in developing pride and love of their bodies, in a way that sounds very much like a part of one's identity.
Some people use the term in a medical context to describe a condition and other people use it as an identity or to describe something about who they are and their relationship to the world. Language is never perfect or simple and while it makes sense for professionals to try and find a common language, when it comes to people talking about themselves, people should have the right to use language that fits for their experience.
In 2006 a group of clinicians from both North America and Europe developed a consensus statement, and proposed the term "disorders of sex development" (DSD for short) to be used in a medical context instead of intersex. Because these conditions are a known part of human diversity, others prefer to avoid the pathologizing term "disorders" and instead use DSD to stand for "differences of sex development" which is truly what is being described. The consensus statement defines DSD as "congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical."
Another organization, Accord Alliance, which developed out of the Intersex Society of North America and has a mission to "promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by DSD by fostering collaboration among all stakeholders" uses the language of DSD specifically as a way of talking about issues of difference without imposing the need for identity politics.
No group or individual will ever have the "right" language that works for everyone. If you are reading this in part because you want to know the most respectful language to use, the answer is always to check with the people you are talking with and (if they are different) also check with the people you are talking about.
How Common is Intersex?It is estimated that around 1 in 2000 infants are born with what are called ambiguous genitalia, essentially genitals that aren't clearly readable as male or female. This is the number that is usually associated with intersex bodies or people. In 2000 a group of researchers from Brown University conducted an exhaustive review of clinical literature from the 1950s on, looking more broadly at the frequency of individuals born with bodies that deviated from the ideal male or female forms that represent what is expected. They found that as many as 1 in 100 infants are born with some kind of sex anomaly. In either case, when we actually look at the numbers, it is clear that the idea of there being a clear sex binary, with little or no variation, isn't borne out by the data. Human variation in sex is predictable and diverse.
Why Acknowledging Intersex Is Important: Putting a Stop to Unnecessary SurgeriesIn most cases infants born with ambiguous genitalia or with differences in internal anatomy, chromosomes, or hormones, are not experiencing a health crisis or emergency. Nonetheless, it has been, and in some places continues to be, common practice to perform multiple, unnecessary, surgeries on infants who are born with bodies that don't conform to expectations of what a male body or female body should look like at birth. These surgeries are rarely just one time inconsequential interventions. Instead they often lead to multiple surgeries across the course of someones life, and can themselves create health problems, in addition to negative psychological and emotional impacts.
The reason given for medical intervention soon after birth has historically been to make them "normal" and help them fit in better with societies expectations of both a sex and gender binary.
Parents were advised never to tell their children about this, to keep the surgeries and the reality of their bodies a secret. When you listen to people who have been through this and have survived into adulthood talk about their experiences it is clear that surgeries and secrecy have devastating effects, physically, emotionally, and psychologically, and also set families up to break apart.
Thanks to adults who have survived, and who began speaking up in the 90s, this common practice is being challenged. Much more needs to be done to stop this practice, but change is happening.
There isn't one story about intersex, or one way of thinking about these issues. But if we are to look at the medical literature and listen to the parents and children who have had unnecessary surgeries and who have been lied to about their bodies, it is clear that the silence around differences in sex development need to be talked about more. And there is growing agreement that surgeries performed on children without their consent that are not related to an immediate health crisis need to stop. Acknowledgement of intersex means acknowledging that there is great variation in sex development and that variation isn't a medical problem or a pathology.