What It Means To Be Intersex

by Amber Leventry
Originally Published: 
Intersex Human Rights

If you haven’t heard the word “intersex,” or have and still don’t know what it means, you are not alone. Many don’t know that the I in acronym LGBTQIA+ stands for intersex. And too many myths perpetuate a silence and shame around a word that shouldn’t be stigmatized. Intersex is an often misunderstood term at best, but being intersex is as common as being a redhead.

The Basics

A person being born intersex is a naturally occurring biological event in humans. Being intersex can mean a variety of things, but the most basic definition is that a person does not fit the typical definition of what it means to be male or female. An intersex person may be born with ambiguous genitalia, but that is far from the complete picture. Sex truly is a spectrum. An intersex person has variations in chromosomes, gonads, internal sex organs, hormones, or secondary sex traits that lead to what some people wouldn’t consider “normal.” Often you can’t point out an intersex person by looking at them, but there is a very good chance you have met someone who is intersex. Some intersex folks may not know they are intersex until puberty.

Planned Parenthood suggests that one in 100 babies born in the U.S. are intersex, and about 2% of the world’s population is intersex. For comparison, about 2% of the world’s population has green eyes. We don’t try to change the color of a person’s eyes or hair because they don’t conform to the majority, but parents and surgeons are often quick to unnecessarily alter an intersex child so that they fit in according to societal constructs of gender and sex.

The Horror

An intersex child could have male chromosomes and internal testes but female genitalia. They are genetically male, but to “normalize” the child, surgeons perform — sometimes after pressuring parents to do so — cosmetic surgery on a child to create genitalia that will allow for doctors to match a child’s body to the gender they chose for the child. This is what happened to intersex activist Pidgeon Pagonis. Assigned female at birth, two centimeters were removed from their enlarged clitoris when they were four years old. At 11, their vagina was enlarged. Now 33, Pagonis has scarring, loss of sensation, and pain during sex. The emotional trauma is as severe as the physical. None of their surgeries were medically necessary, and Pagonis didn’t find out they were intersex until they were in college. It is not uncommon for medical records to be hidden from intersex people.

Activists like Pagonis, The United Nations High Commissioner for Human Rights, former U.S. surgeons general, Human Rights Watch, and parents of intersex children are calling for an end to all childhood surgeries. Some doctors don’t provide nonsurgical suggestions for intersex children; others who perform unnecessary surgeries on healthy children tell parents there are potential medical dangers to not reducing a clitoris or removing internal sex organs. Doctors claim they are reducing psychological trauma to a child by making their body “normal.”

The Hope

Kristina Turner found out her child, now 12-year-old Ori, is intersex when they were seven weeks old. “We were advised to do a couple different surgeries to ‘solidify’ a female gender, a gender they themselves could only say was a 65-75% certainty,” Turner told Scary Mommy. She told them no. Ori was healthy and there wasn’t a medical need for surgery despite the doctors’ insistence.

Turner, who lives in Seattle, Washington and is also a parent to two other children: “I knew that at the end of the day when Ori is grown it is me that would have to answer why I altered their body when it wasn’t necessary and I knew from the research I had done (and my own personal life experience) that protecting Ori’s psychological health and well-being was the most important thing I could do.”

Ori is happy and healthy. Ori identifies as intersex and transgender. They feel in between genders and use they/them pronouns. They have been allowed to define themselves and add labels that fit and feel right instead of fighting against the constraints on what others have put on them. Removing healthy body parts and tissue from a child is not normal. Normal should be a child and human who has been given information and been asked for consent to have their body surgically modified.


When it comes to capturing as many of the marginalized voices in what I collectively call the queer community, I tend to include, write, or say these letters: LGBTQIA+. This is an expansion of LGBT or LGBTQ. Most of us are familiar with the first four letters: lesbian, gay, bisexual, transgender. The Q stands for queer or questioning; some folks within the LGBT-IA+ community do not identify as queer. I do, but I am also sensitive to those who do not. We don’t all hold onto the same labels that describe our identities.

The letter A stands for asexual. An asexual person is one who may feel romantically attracted to someone else but not feel sexual feelings for another person. They still may feel sexual feelings but are happy to take care of those feelings on their own. The + encompasses the other, no less beautiful forms of love and identities which fall outside of the heteronormative.

There is debate about the I being included in the acronym.

Axel Keating, 26, Vice President of interACT Advocates for Intersex Youth, educator, community organizer, and activist based in New York City told Scary Mommy this: “The LGBTQIA+ acronym offers visibility, more awareness about sex traits and sex assignment at birth, and solidarity around discrimination due to non-adherence to “norms” (in this case sex traits), medicalization, denied bodily autonomy, and inadequate medical care in many situations.” Keating mentioned that some intersex folks do not want to be included under the LGBTQIA+ umbrella. They may not identify as LGBTQ+ or don’t want to be connected to the queer community, either out of fear or bigotry.

Keating added this insight: “For intersex people who are LGBTQ+, they are their whole selves — not just one or the other. The same goes for race, class, gender, disability, immigration status, citizenship, religion and spirituality. So when we talk about queer communities, we are talking about intersex issues, but we are also talking about immigration, housing, accessibility, and everything queer people face in their lives.”

Keating reminds us to put the I in LGBTQIA+ if we are actually including and advocating for intersex people.

As for Ori, they love the inclusion and identify with many pieces of the acronym.

We need to stop performing “normalization” surgery on kids so they conform to forced gender labels—a label that may change when the child can express their true identity. Intersex refers to an expression of biological characteristics. There are many beautiful and healthy versions of these expressions; the incorrect notion that sex determines gender and that gender must look a certain way hurts the intersex community. More parents are turning away from surgeries on their intersex children, but all of us need to be better educated and better allies. We all need to have more meaningful conversations about gender and gender expression as well.

Kristina Turner added, “If I could give advice to prospective parents of intersex babies it would be this: learn from intersex people; let your child lead the way. Pick a gender if you have to (without surgery) but accept that the gender may change and could change more than once. It’s your job to protect and guide them on their own journey and love them. It’s the world that needs to change, not them.”

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