Intersex Experiences

 

When it comes to biology and gender, many people have a narrow and overly simplistic view of the world.

They view people as either male or female, based solely on their anatomy at birth.

 

There are many people who don’t fit neatly into this simplistic worldview.

 

Transgender people don’t identify as the gender they were assigned at birth.

Nonbinary people have a gender that isn’t exclusively male or female.

And some people have bodies that lie somewhere in between those traditionally considered male or female.

These people are known as intersex.

 

 

Intersex Identity

 

Intersex refers to people who have physical traits different than those traditionally considered male or female. 

Sometimes these differences are noticed at birth. Other times, they aren’t apparent until puberty or later in life. 

Intersex people may have differences in sex chromosomes, genitals, internal anatomy, or hormones compared to how male and female bodies generally develop.

Someone’s biological sex refers to the physical traits, such as their sex chromosomes, anatomy, and secondary sex characteristics, which are associated with the physical differences between men and women, or boys and girls. 

 

Intersex people can identify as male, female, or nonbinary.

Their biological sex and gender are separate aspects of their identity. 

 

Some intersex people are subjected to genital surgeries as children. Later, as adults, they sometimes wish they hadn’t received these surgeries without being able to choose to receive them.

I covered the debate over intersex surgeries in a blog post I wrote in Jan. 2016. I included perspectives from both advocates and opponents of these surgeries. 

Sometimes parents and doctors don’t tell an intersex child they are intersex. They withhold this information to try to avoid confusing or worrying their child.

This can lead to intersex people feeling that important information about themselves was unfairly withheld from them by their parents and doctors. 

 

 

Breaking the Binary

 

Intersex activist Emily Quinn delivered a Ted Talk in November 2018.

During her speech, Quinn discussed the difficulties faced by people who don’t meet society’s expectations of them, based on a binary model of biological sex and gender. 

 

 

 Emily Quinn: The way we think about biological sex is wrong

 

 

Quinn also discussed the difficult experiences intersex people often have with their doctors.

“We’re not problems that need to be fixed, we just live in a society that needs to be enlightened,” she said. 

 

Quinn said it’s important for people to learn and understand that intersex people exist.

“Biological sex is on a spectrum, it’s not black or white,” she said. “Not only could that knowledge save intersex kids from physical and emotional harm, I think it would help everyone else too.” 

 

Quinn argued everyone, not just intersex people, could benefit from adopting a less restrictive view of sex and gender.

“This binary, this false male/female façade, is something we constructed,” she said. “We built it ourselves, but it doesn’t have to exist. We can break it down, and that’s what I want to do.”

“Will you join me?”

You can also learn more about intersex issues on Emily Quinn’s YouTube channel.

Quinn has worked with InterACT, a US-based organization that advocates for intersex youth.

You can also learn more about intersex people from the Intersex Campaign for Equality, in the United States, and Intersex Human Rights Australia. 

 

 

How common are Intersex people?

 

There is no medical consensus on the boundaries of who is considered intersex.

While intersex is an identity based on biology, it’s also an identity term that individuals ultimately decide whether to adopt to describe themselves. 

I haven’t been able to find any survey data regarding how many people in the US identify as intersex.

Without that data, I can’t do an apples-to-apples comparison with the other LGBT statistics in this series.

 

But intersex activists often cite a statistic that 1.7% of people are intersex. 

That number comes from a research paper that attempted to add together the frequency of various intersex medical conditions.

The statistic concerns how many people meet a medical definition of intersex, not how many people self-identify as intersex.

The research paper was published in the American Journal of Human Biology in 2000.

So the paper is now 23 years old.

 

“How Sexually Dimorphic Are We? Review and Synthesis” is full of medical jargon, so it’s a challenging study for non-doctors to read.

Researchers surveyed medical literature from 1955 to 2000 for studies regarding the frequencies of various intersex conditions.

 

The researchers concluded 1.7% of people are intersex.

“This article began by asking how frequently members of the human population deviate from a Platonic ideal of sexual dimorphism. The grand total is 1.728% of live births.”

One single intersex condition, late-onset congenital adrenal hyperplasia (CAH), accounts for 87% of the total number of intersex people, according to the study.

By itself, late-onset CAH occurs in 1.5% of live births, according to the study.

Some intersex people dislike certain terms doctors sometimes use to describe their intersex conditions.

And some intersex people might not choose to share private medical information when discussing their intersex identity.

That being said, let’s learn more about late-onset CAH, which according to the study mentioned above, is the most common intersex medical condition.

 

The Mayo Clinic describes this condition, which it calls “nonclassic CAH,” on its website.

 

Often, there are no symptoms of nonclassic CAH when a baby is born.

Some people with nonclassic CAH never have symptoms.

The condition is not identified on routine infant blood screening and usually becomes evident in late childhood or early adulthood. Cortisol may be the only hormone that's deficient. 

 

Females who have nonclassic CAH may have typical-appearing genitals at birth. Later in life, they may experience:

·                     Irregular menstrual periods, or not having any at all, and problems getting pregnant

·                     Masculine characteristics such as facial hair, excessive body hair and a deepening voice

 

In both females and males, signs of nonclassic CAH may also include:

·                     Early appearance of pubic hair and other signs of early puberty

·                     Severe acne

·                     Rapid growth during childhood with an advanced bone age and shorter than expected final height

 

 

It’s good to know how many people meet a medical definition of intersex, even though there is no standard definition within the medical community regarding how broadly to define intersex conditions.

Hopefully, in the near future, we will have survey data regarding how many people in the United States describe themselves as intersex.

Survey data based on self-identification would be a far better gauge of how many people think of themselves as intersex.

It would be interesting to compare how many people meet a medical definition of intersex, to how many people identify themselves that way.

But until we actually have survey data to work with, that comparison won’t be possible.

 

This article was published on Oct. 26, Intersex Awareness Day.