Intersex 101

What is intersex?

OK, it's important that I get the basics out for blogreaders unfamiliar with intersex conditions. In our society, it’s common to think that all people are born either male or female. But the biological truth is that sex is a spectrum. It’s typical for people to lie near the male or female ends of the spectrum, but many people are born with bodies closer to the middle. Sometimes this fact is immediately clear at birth, because a baby has intermediate genitals. Sometimes a person may look male or female on the outside, but have different internal organs than would usually be expected. And sometimes a person may have a body with typical female or male organs, but have chromosomes that do not match expectations.

How common is intersexuality?

About 1 in 1000 babies are classified at birth by doctors as intersex because their genitalia appear atypical. This is more babies than are born with Down’s Syndrome. Many more babies are diagnosed as having a "disorder of sex development" based on variant genitalia, yet not given an "official" intersex diagnosis. Other individuals are not diagnosed at birth, as their genitals appear fairly standard, but later are found to have an intersex condition. It is commonly estimated that 1 in 150 people has an intersex condition. Some find out because they encounter fertility problems, or have a medical scan done for some unrelated reason. Some people never know--do you know if your chromosomes are XX, XY, XXY, or some other variation?

What is the gender of an intersex person?

The way to tell the gender of an intersexed person is to ask them. Often intersexed people identify as either male or female, because that is how contemporary Western society understands gender. Some of us do not identify as male or female, however. You can’t tell by looking at an intersex person’s body what their gender identity will be—different people with similar looking intermediate genitals will have different identities. Simply respect each individual’s sense of self.

What are central concerns for intersex people?

Intersex status has been treated as a source of shame in the U.S., which means that most intersexed people are in the closet about their status. We have been called “freaks” and “monsters,” have been treated as sexually titillating, have been excluded from international sporting competitions, and have been subjected to medical treatment without consent. Intersex people deserve to have their bodies, their gender identities, and their choices respected.

A major complaint of many intersex people is that they were subjected to childhood surgery that they are unhappy about. Every day in the U.S., 5 babies are given sex assignment surgery to “correct” intermediate genitals to look more typically female or male. Doctors choose the sex they see as appropriate for the infant based on appearance or surgical ease—and quite often, their choice is wrong. In addition, many cosmetic surgeries are given to try to “normalize” children’s genitals. Although doctors say they have gotten better at these surgeries over time, they usually produce loss of genital sensation. I don't know about you, but I and many others would rather have sensitive genitals than somewhat-more-average-looking ones. Advocates for the intersexed urge that no sex assignment or cosmetic surgery be performed on children. Instead, intersex children should be allowed to grow up to make their own decisions about what surgery, if any, they would like.

Intersex people may suffer from gender dysphoria if they were assigned by doctors to a sex but do not identify with it. If so, they should be assisted in securing hormonal and/or surgical treatment so that they can transition to the sex that is the same as their gender identity. Intersex people who develop at puberty in ways that conflict with their sense of identity should be given access to hormonal treatment to suppress unwanted periods, beard growth, etc. In dealing with managing our bodies with surgery and/or hormone therapies, intersex people share experience with trans people, and that commonality should be respected.

Intersex people and their families may also need supportive therapy. When a mother gives birth to an intersex baby, the family may be thrown into distress. It is especially important that the family receive support so that hasty decisions about “normalizing” surgery are not made. Adults who discover that they are intersexed may also be thrown into an identity crisis and need support. And since all intersex people have to face lack of understanding and pressure to hide our sex status, many of us need access to counseling.

There is a myth that intersex people are almost always infertile. Sadly, many of us are infertile not because of how we were born, but because of surgical intervention in infancy. In fact, intersex people can have children (I did it. . .), but we may need fertility treatment and supportive medical assistance during pregnancy and birth.

What are some common types of intersexuality?

There are many conditions that lead to intersex status. I have no interest in getting overly clinical and showing the sort of medical photographs of dehumanized children with their genitals exposed that are so common in discussions of intersex. We are people, not . . . bits for display. However, I'll do a quick run through of some of the most common flavors of intersex people, with physical description, in the name of education.

People with Androgen insensitivity syndrome usually have a clitoris, labia, and partial vagina, with testes internally. They develop breasts at puberty, but no periods. People with Partial androgen insensitivity syndrome are born with intermediate genital appearance and internal testes.

People born with Congenital Adrenal Hyperplasia or CAH are born with a phallus, empty scrotum, a uterus, and ovaries. At puberty, people with CAH will develop breasts and get a period.

Hypospadias refers to a range of conditions in which a person has phallic tissue, but does not have the urethral opening at the tip. This can be a small displacement in an otherwise typical penis, or can occur with an intermediate genital appearance.

People who have Klinefelter Syndrome are born with XXY chromosomes. Individuals with Klinefelter’s usually have a penis and small testes, wide hips, small breasts, and are usually tall and long-limbed.

People who have ovotestes are termed true hermaphrodites by doctors. Ovotestes are gonads which combine ovarian and testicular elements. Those of us with ovotestes may also have an ovary or a testis, and often have a uterus and a menstrual period.

What can other people do to be allies for intersex folks?

There are plenty of things allies can do, and I'll post more about them later. But the single most important thing allies can do is to refuse to treat intersex status as something shameful and freakish. Allies can help educate people about the fact that intersex happens and is not some sort of medical emergency requiring cosmetic surgery on infant genitals. Only an intersex person can determine what hir gender is, and what surgery if any zie wants--doctors and parents can no more decide what gender a person will have than they can pick hir sexual orientation or taste in music. Educating people about this will help lead to a day when parents welcome an intersex baby as a happy rather than tragic addition to the family.