A Brief Guide to Intersex

Are you a boy or a girl?”

For an intersex person, the answer to this question is not as straightforward as it may seem.

Few of the folks I’ve met in my life really comprehend what intersex is, if they’ve heard of it at all. That’s where this guide comes in! I’m here aiming to equip you with a basic understanding of intersex variations and intersex advocacy tools for yourself and for anyone else where a clear, brief explanation could come in handy.

What Is Intersex?

According to the Intersex Society of North America (ISNA), 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. For example, a person might be born appearing to be female on the outside but having mostly male-typical anatomy on the inside” (n.d.). In other words, intersex people can have different combinations of what are most commonly considered to be “male” and “female” body parts. Now, before we go further, it’s important to clarify that conceptions of male and female are not as physiologically binary as we may think. The categories male and female assume things about people that we actually don’t know for certain to be true, such as the assumption of what chromosomes they have. Since we are aware that intersex individuals exist outside of the male/female binary, it cannot be said that it fully encompasses the full range of human experiences.

Sometimes, intersex variations are visible, like having a larger clitoral glans, a urethral opening in a different place than is typical for the sex a person was assigned, smaller testes, or breast/chest development when it wouldn’t usually be expected. Other intersex variations are not visible, such as having internal testes in place of ovaries, or having XXY chromosomes, or another uncommon variation, instead of XX (“female”) or XY (“male”). Hormonal differences are also not always visible from the outside, at least with clothing on. These can result in someone having the chromosomes and internal gonads of one sex and genitalia like that of the other sex. For instance, someone could have XX chromosomes, internal ovaries, and a penis.  Intersex variations can affect the chromosomes, secondary sex characteristics (like Adam’s apples), genitalia, and/or hormones.

What Intersex Variations Are There?

---

Explaining this requires some science lingo. For those in need, here’s a brief glossary:

1. Chromosomes: these are long molecules that contain part of our genetic make-up. Most people have 46 of them. We get half of these from each of our genetic parents. Those of us who are considered by mainstream medical science to be “female” have XX chromosomes, and those of us who are considered “male” typically have XY chromosomes. An example of a chromosomal difference in intersex folks is 46,XX, where someone many people would consider to appear male actually has XX chromosomes. The number refers to how many chromosomes we have, and the letters after refer to the combination, which can be XX, XY, XXY, XO (where the O means that the second X chromosomes is absent), and many more combinations!

2. Hormones: These are one of many substances made by glands in the body. They circulate in the blood and control or influence what certain cells or organs do. They are essentially like messenger molecules to send signals to regulate our metabolism, growth, development, our body’s natural balance called homeostasis, sexual function, reproduction, the sleep-wake cycle, and our mood. All of us have androgens and estrogens, though these have historically been, and are still, assigned gender as masculine or feminine hormones. Testosterone is an androgen and is the dominant sex hormone in those considered to be “male”, while estradiol is an estrogen and is the dominant sex hormone in those considered to be “female”.

3. Gonads: These are organs that either produce eggs in those of us with ovaries or sperm in those of us with testes. The joining of an egg and a sperm to create a fetus is where we get half of our genetic code, like I discussed before!

---

People are often curious about what intersex people’s bodies look like.

Ideas of what intersex people look like are often rooted in fear, stigma, or through a very sexualized lens. Intersex people historically have worked as sideshow acts, such as the Bearded Lady Ethel Darling in American Horror Story . An episode of All Saints showed a woman with an intersex variation (AIS) as both “superwoman” and a “genetic glitch” (Hart, 2016). Grey’s Anatomy has also failed to depict intersex in an episode about medical disclosure and gender identity (Hart, 2016). These narratives do not accurately show the intersex community, and like in the last example, sometimes we are excluded altogether.

As an intersex person, I think there’s nothing wrong with being curious, but we need to be sure we channel that in the correct way. It’s never okay to ask someone what intersex variety they have, what their genitalia look like, or anything else that you would not be comfortable answering yourself. If you find yourself about to ask such a question, reconsider this choice and think about how it would make you feel to be asked the given question. Consider the wider implications of assuming that details about someone’s genitalia, medical history, etc. are part of the public domain. What comes up for me when considering this is that this puts intersex people back in the category of a spectacle. We want to be treated like people, not sideshows. But to quench some of that curiosity, I’ll describe some of the most common intersex variations here!

• Congenital Adrenal Hyperplasia (CAH): In this intersex variation, an enzyme is absent that typically allows a person with a specific chromosomal variation (46,XX) to produce androgens like testosterone. Someone with CAH might have an enlarged clitoris and fused labia.
• Androgen Insensitivity Syndrome (AIS): AIS causes those with 46,XY chromosomes to be unable to react to androgens. In some of us, this may result in internal testes but an external vulva. People with AIS usually do not menstruate, but may grow breasts.
• Gonadal Dysgenesis: In this intersex variation, the testes do not secrete androgens. Someone with this variation may have XY chromosomes, internal testes, and a vulva.
• 5-Alpha Reductase Deficiency: Those with XY chromosomes who have this variation do not produce the powerful hormone DHT. People with 5-Alpha Reductase Deficiency may have a small penis with overall “male” development, and they do not develop facial hair.
• Klinefelter Syndrome: People with this intersex variation are genetically 47,XXY (an extra X chromosome) and often have a small penis and testes, low testosterone secretion, and they sometimes develop breasts.
• Turner Syndrome: Those with Turner Syndrome (TS) are genetically 45,XO (where we’d normally have two copies of the X, those of us with Turner syndrome only have one X and that’s it). Usually, people with TS have a vulva externally, but do not have ovaries internally. They may not develop breasts, and may be short, have a webbed neck, and/or have differently shaped internal organs.

It’s important to remember that these are just six examples of intersex variations. There are many different intersex variations out there — at least 30! — not just the ones listed here. There is no one typical way or one correct way to be intersex. Just like how XX and XY people have variations within their respective groups, intersex people do too. Some XX people menstruate, others do not. Some people with XY have prominent Adam’s apples, others do not. This same concept applies to the intersex community.

How Do Intersex Folks Know if They’re a Boy or Girl?

Good question! Sex does not determine someone’s gender identity, unless we feel like it does for us personally. What our gender (if we consider ourselves to have one at all!) is up to each of us, regardless of what gender we were assigned at birth or how we were raised.

Unfortunately, many doctors have long believed and often still believe that intersex variations and the people who have them are disorders to be “fixed”, rather than diversity to be celebrated. Often, brand new parents are told that their intersex baby needs surgical intervention, hormone therapy, or other intensive treatment regimens in order to “fix” their intersex body. Many parents cave in out of concern for their baby. Intersex people are subjected to unnecessary surgeries and medications to make our bodies align with the sex binary. This results in a lot of trauma, pain, and confusion. Further, sometimes parents are not even told until afterwards that their intersex baby has had the aforementioned medical interventions! This still happens today. Several statehouse bills that were introduced in 2021 that intended to restrict access to gender-affirming healthcare for transgender youth have specific exemptions to allow for “gender-normalization” surgeries on intersex youth (Ernst, 2021).

Intersex people who do not have surgeries or other interventions simply decide their gender when they are old enough to express it. And, of course, this may change throughout one’s life! The key point is that once we are old enough to actively participate in decisions about our gender, bodies, and medical care, we are truly consenting to the treatment. As babies, we can’t give our consent!

What’s Off Limits?

The media has led to many wrong assumptions about intersex people. Earlier in this article, I described a few negative depictions of intersex people in popular TV shows. Here, I want to debunk some common assumptions or stereotypes about intersex people.

True or False?

1. It’s possible to have a full set of both sex organs (ovaries and a vulva and testes and a penis).

Answer: FALSE. While intersex people have different combinations of sex organs, chromosomes, and hormones, it is not possible to have all physical aspects of both sexes at once.

2. Intersex people are necessarily transgender.

Answer: FALSE. Intersex people may certainly be and identify as transgender and/or undergo a gender transition. However, intersex variations are just that: physical variations, not inherently an identity. Intersex people can and do sometimes consider themselves to be cisgender. Some intersex people also consider themselves to be part of the wider LGBT community, while others do not.

3. Being intersex is super rare.

Answer: FALSE. Around 1.7% of the population is intersex. This is similar to the percentage of people born with red hair!

4. For some people, there is no way to know if they are intersex.

Answer: TRUE. Hormonal and chromosomal variations do not always manifest in obvious physical differences. Additionally, with the prevalence of “corrective” intersex surgeries, our outward intersex features may have been altered to appear to fit the sex binary.

5. Not all intersex people are white and androgynous.

Answer: TRUE. Intersex people exist all around the world and come from all racial and ethnic backgrounds. There is no one way to “look” intersex. If we are intersex, we look like an intersex person! It’s that simple.

6. Intersex people cannot have biological children.

Answer: FALSE. There are some of us who can, and some who cannot. Everyone is different.

7. Intersex people are beautiful and showcase the amazing biodiversity of humans.

Answer: TRUE. Intersex people are living examples of the cool ways that our bodies differ from each other. Evolution thrives on diversity. Genetic diversity helps us move forward as a species and gives us a better chance at survival.  What fun would life be if we all looked the same?

---

You’ve reached the conclusion of this brief overview of intersex! I hope that you will take away that conventional, binary views of male and female are not relevant to everyone, that many media representations of intersex are rooted in stigma, and that intersex people are more common than we may assume. I hope you feel comfortable sharing some of your impressive new science knowledge about sex and intersex with others and that you are able to recognize the wide spectrum of ways that intersex variations reveal themselves (or don’t) on our bodies.

More resources for intersex people can be found online at InterACT.

If you think you may be intersex but are not medically diagnosed, one option is to speak to your primary care provider, if possible. They can direct you to specialists that can give you more answers, as well as help identify common physical clues of being intersex. Specialists that your doctor refers you to may include an endocrinologist, urologist, or gynecologist, depending on your concerns and/or questions. Although, it’s good to keep in mind that many physical aspects of intersex variations do not need ongoing medical treatment, or any at all. Some of us have experiences that lead us to realize we’re intersex, such as a surgery as a child, rather than being told a diagnosis. Depending on your circumstances, you may want to discuss these experiences with folks who have been through the same things. It can be helpful to find an intersex-inclusive group to discuss these often traumatic experiences. If applicable, it would also be a good idea to check in with your high school or college’s LGBT+ organization(s) for support.

---

References:

• Syndromes of Abnormal Sex Differentiation | HealthyPlace. (2007, August 9). https://www.healthyplace.com/gender/inside-intersexuality/syndromes-of-abnormal-sex-differentiation
• ISNA. (n.d.). What is intersex? Intersex Society of North America. Retrieved January 16, 2023, from https://isna.org/faq/what_is_intersex/
• Hart, P. (2016). Writing characters with intersex variations for television. Journal of Screenwriting, 7(2), 207–223. https://doi.org/10.1386/josc.7.2.207_1
• Ethel Darling. (n.d.). American Horror Story Wiki. Retrieved January 16, 2023, from https://americanhorrorstory.fandom.com/wiki/Ethel_Darling#:~:text=Ethel%20Darling%20is%20a%20bearded,primarily%20portrayed%20by%20Kathy%20Bates.
• Willa Ernst, S. (2021, May 4). How Transgender Youth Health Care Bills Also Target Intersex Kids In Texas. Houston Public Media. Retrieved January 16, 2023, from https://www.houstonpublicmedia.org/articles/news/health-science/2021/05/04/397293/how-transgender-youth-healthcare-bills-also-target-intersex-kids/