What Is Intersex? Inside The Medical Condition That Is As Common As Red Hair

New York City made history this week when it issued a birth certificate listing “intersex” for the gender of 55-year-old Sara Kelly Keenan. Despite the fact that estimates say as many as 1.5 percent of babies are born intersex, many people still know almost nothing about the relatively common medical condition where a person is born with both male and female anatomy.

The Intersex Society of North America (ISNA) says that intersex is 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.

Some intersex individuals are born with genitals that seem to be in between the usual male or female types. Other intersex people are born with “mosaic genetics,” so that some of their cells have XX chromosomes and some of them have XY. Other intersex people may have some male reproductive or sexual organs, and some female. Sometimes, intersex people appear to be one gender on the outside but have reproductive organs of another gender internally.

Since there are so many ways to be born intersex, there are varying rates of how often it occurs. For instance, it is estimated that the average number of babies who are born with bodies that differ from standard male or female is one in 100 births, while the total number of children who undergo surgery to “normalize” genital appearance is about one or two in 1,000 births. About one in 1,666 babies are born neither XX or XY, and about one in 1,000 are born XXY (a condition also known as klinefelter). Other variations of intersex are far more rare, while others occur in as many as one in 66 people.

According to the nonprofit InterACT, about 1.5 percent of the population is intersex, making the condition as common as natural born redheads.

Though some people are identified as intersex at birth, the condition is not always apparent in infancy. Some people do not find out they have intersex anatomy until they reach the age of puberty or find themselves struggling with infertility as adults. Some intersex people live with intersex anatomy without anyone (including themselves) ever knowing. In some cases, families only found out after an intersex person died and an autopsy was performed.

ISNA calls intersex “a socially constructed category that reflects biological variation,” pointing out that gender can be seen as existing on a spectrum just as color or race can.

“To better explain this, we can liken the sex spectrum to the color spectrum. There’s no question that in nature there are different wavelengths that translate into colors most of us see as red, blue, orange, yellow. But the decision to distinguish, say, between orange and red-orange is made only when we need it—like when we’re asking for a particular paint color.”

Sometimes social necessity leads us to make distinctions that otherwise would seem incorrect or irrational, they say, such as when we call people “black” or “white” when they’re not especially black or white as we would otherwise use the terms.

The Organisation Intersex International (OII), an advocacy group for intersex individuals, points out that many groups continue to give outdated numbers for how common intersex people are.

“Some groups use an old prevalence statistic that says we make up 1 in 2000, or.05%, percent of the population, but that statistic refers to one specific intersex trait, ambiguous genitalia,” they say, which is one of many variations of intersex.

Dr. Anne Fausto-Sterling, Professor of Biology and Gender Studies at Brown University, says that when all of the types of intersex traits are combined, they constitute 1.7% of the population.

Despite how common the condition is, many people have never heard of the term intersex. This is largely due to the fact that until recently, most doctors believed it was necessary to treat intersex children with what ISNA calls “a concealment-centered approach.”

Parents whose children were born intersex were often told to keep the condition secret and encouraged to simply assign a gender to their new child — based on the one that seemed to match more closely or the one that seemed easier to try to force. Intersex children themselves were often kept in the dark about being intersex, even as they were having surgeries and taking hormones doctors prescribed in order to try to force their bodies to conform to the gender they were assigned.

Intersex children are still commonly subjected to surgeries without their consent, often without even being told that they are intersex or the true purpose of the surgeries.

The rights and issues of intersex people are sometimes included in the LGBTQ community, especially as they can face similar struggles. The acronym LGBTQIA includes the “I” to represent intersex people (it stands for lesbian, gay, bisexual, transgender, queer, intersex, and asexual).

It’s important to note that not all intersex people identify as members of the LGBTQ community, though, and most intersex people do not identify as transgender.

Transfaith explains that that most intersex individuals just see themselves as people with a medical condition that is independent of their identity.

“The vast majority of people with intersex conditions identify as men or as women with unusual medical conditions. While these people may have an intersex condition, they do not describe themselves as “intersex” or “transgender.” However, they still face the stigma associated with these various conditions, including ridicule, medical objectification, and non-consensual surgeries.”

However, a “significant minority” of people with intersex conditions do identify as intersex and some of these people do identify as transgender. These can include intersex individuals who did not identify with the gender they were assigned at birth.

Alex Jinkinson, an intersex singer who was adopted from Peru as a child, told CNN about growing up in Iowa as an intersex child. Jinkinson was labeled a male on her birth certificate and had some masculine physical traits, but she was born with a partial female reproductive system — a vagina externally but no ovaries or uterus internally. She identifies as a female.

Jinkinson was diagnosed with partial androgen insensitivity syndrome at four years old. She recalled being bullied in school for looking different and struggling with depression.

“It was very confusing for people that I went to school with… because of not developing that feminine look,” she said.

She credits her parents, who she says “just raised me as a person,” for helping her get through that time.

Eventually, with the support of her parents, she chose to have surgeries to feminize her appearance in adulthood, including facial surgery, breast augmentation and surgery to remove excess skin around her genitalia that had been present since birth. She plans to release her debut album, “Dance in the Rain” early next year under the name Ali J.

“I looked at my story as a curse when I was younger. I realize now that I want to share my story to showcase that we all have different life battles,” she says.

[Featured Image by Fosin/Shutterstock]