What Does It Mean to Be Intersex?

In the last 40 years, intersex people have made huge strides to reclaim the term as one of empowerment. 
What Is Intersex
Michael Burk

From its introduction as a medical term to its rebranding in the 1990s, the word “intersex” has been reclaimed in recent years by activists fighting for bodily autonomy within the community.

In the 1900s, doctors began describing people born with anatomy that differs from binary ideas about biological sex as "intersex." Over the next century, intersex people were stigmatized by the medical community and pushed into unnecessary surgeries to "correct" what they saw as an aberration from the norms of the human body.

But in the 1970s, activists and intersex community members began a campaign to reclaim the term as an identity and community rather than a medical diagnosis, pushing to normalize being intersex and help people understand what it means. Today, organizers are pushing back on unnecessary surgeries, especially against intersex children.

The term has been pushed into the spotlight in recent years by hormone limits for athletes in major sporting events like Olympic Games, preventing some intersex competitors from entering. If you’re wondering exactly what it means to be intersex, the history of the term, and how intersex people are fighting back today, read on to find out.

What Does Intersex Mean?

“Intersex” is an umbrella term that refers to people who carry variations in their reproductive and sexual anatomy that differ from what is traditionally male or female. An intersex person can appear to have one kind of genitalia on the outside and another internally. They might have some XX chromosomes and some XY chromosomes. They can have ambiguous genitalia or not, and know at birth that they’re intersex or find out later.

The bottom line is: “intersex” is a word with a broad meaning, encompassing a number of traits and presentations. According to the Oxford English Dictionary, the word “intersex” has been around since the late 1700s. Before the twentieth century, the term was rare and referred to relations “between the sexes.” It was only in 1917 that a German geneticist named Richard Goldschmidt used the term in the way we understand it today.

Being intersex does not refer to a person’s gender identity. Just like people who are endosex (not intersex), someone who is intersex can be any gender. Additionally, intersex does not refer to a person’s sexuality.

How Common Is It To Be Intersex?

Estimates suggest that about one to two people for every 100 are born intersex, making it more common than being a redhead, even though many presume it to be extremely rare. Advocates say this lack of representation and awareness is directly linked to the history of medical violence intersex people have faced.

Prior to the term “intersex” being popularized in the 1900s, the term “hermaphrodite” was used in 18th and 19th-century medical literature to describe individuals who were intersex. Now considered a derogatory slur, the term evoked a mythical creature and the pursuit of a body with both male and female reproductive anatomy.

It was only after the geneticist Richard Goldschmidt used the term in his 1917 paper “Intersexuality and the Endocrine Aspect of Sex” that intersex and hermaphrodite were used interchangeably in articles through the 1920s, ‘30s, and ‘40s. The 1950s marked a turning point for the word intersex and the ways being intersex was stigmatized by both doctors and the public. Dr. John Money, a psychologist, began writing in the 1950s that intersex people were psychologically healthy — but would turn out even better if babies were made to look like the gender they were being raised.

Until the ‘50s, most surgeries to alter intersex traits were done on adults who chose to undergo such procedures or whose doctors pressured them to do it. The Hopkins team gave way to a new protocol where intersex children were given so-called “corrective” genital surgeries and hormone treatments, often without their knowledge and consent, and even if the surgeries were not medically necessary. For the next few decades, the word “intersex” proliferated along with such surgeries, until the community came together to reclaim the terminology.

What Does Intersex Advocacy Look Like Today?

In the late 1980s, the intersex movement began to percolate. Intersex people who had been subject to secrecy about their medical records and made to feel ashamed of their bodies began organizing support groups and circles. An activist named Bo Laurent wrote a letter to The Sciences, a magazine, in response to a paper about sex and gender in 1993. In it, Laurent announced the founding of the Intersex Society of North America.

“Surgical and hormonal treatment allows parents and doctors to imagine that they have eliminated the child's intersexuality. Unfortunately, the surgery is immensely destructive of sexual sensation and of the sense of bodily integrity,” the letter read.

The first ever public intersex demonstration was held on October 2, 1996, when I-S-N-A activists protested a conference held by the American Academy of Pediatrics in Boston. Activists used the slogan “hermaphrodites with attitude” on signs, shirts, and newsletters as a way to reclaim the term “hermaphrodite.” This shifted to “intersex” as they sought to work with doctors to stop nonconsensual surgeries. The anniversary of this first public protest for intersex rights became Intersex Awareness Day.

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The ever-changing Pride symbol has been revised again.

Throughout the early 2000s, intersex people only gained more visibility, this time in popular media and books. Jeffrey Eugenides published his bestselling book Middlesex in 2002, a fictional story of an intersex young man. After selecting Middlesex for her book club, Oprah featured intersex people on her show in 2007 to talk about their experiences. However, both Middlesex and Oprah’s feature on intersex people have been criticized for fetishizing the shame and suffering they experience. From House to Grey’s Anatomy, representation on popular shows from the mid-2000s only furthered salacious tropes about the community.

While the term “intersex” gained more traction and challenged the idea that there was anything to “fix” with intersex bodies, new terminology arrived in 2005. DSD, or “disorders of sex development,” was introduced in medical settings as another way to describe being intersex. DSD frames being intersex as a disorder in need of treatment, rather than a biological variation. Activists fear that if parents of intersex kids are told their child has a “disorder of sex development,” they won’t be able to make an informed choice about surgery or even know it means “intersex.”

In recent years, intersex people have also had to push back against unfair regulations imposed on athletes looking to compete in major international sporting events. Intersex athletes were barred from competing in their events at the Olympics due to hormone restrictions. These regulations force intersex athletes to take medications to lower their natural testosterone levels, often by taking medications with harmful side effects and unknown long-term effects. “Excluding female athletes or endangering our health solely because of our natural abilities puts World Athletics on the wrong side of history,” Semenya said in 2020.

Today, the term “intersex” is still being reclaimed by people as a way of challenging how both the medical community and general public have policed their bodies. Intersex people continue to fight non-consensual surgeries, are seeking legislation to protect children from these procedures, and are pushing back against the regulation of their bodies in general. “Intersex” is entering new terrain as a human rights issue to allow people to make choices about their own bodies.

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