“They took things out of me, like body parts, and then they deposited shame inside of me to replace that, like glue to keep the lie alive.Pidgeon Pagonis
Intersex babies are born at about a rate of 0.018% (Sax, 2002). You may have seen stats such as 1 in 100 babies born are intersex (INSA.org) or 1.7% (Sax, 2002). But for the purpose of this blog post, we’ll go with the medical definition of intersex.
The person has the chromosomes of a woman, the ovaries of a woman, but external (outside) genitals that appear male. This most often is the result of a female fetus having been exposed to excess male hormones before birth. The labia (“lips” or folds of skin of the external female genitals) fuse, and the clitoris enlarges to appear like a penis. In most cases, this person has a normal uterus and fallopian tubes. This condition is also called 46, XX with virilization. It used to be called female pseudohermaphroditism. There are several possible causes:
- Congenital adrenal hyperplasia (the most common cause). Male hormones (such as testosterone) taken or encountered by the mother during pregnancy.
- Male hormone-producing tumors in the mother: These are most often ovarian tumors. Mothers who have children with 46, XX intersex should be checked unless there is another clear cause.
- Aromatase deficiency: This one may not be noticeable until puberty. Aromatase is an enzyme that normally converts male hormones to female hormones. Too much aromatase activity can lead to excess estrogen (female hormone); too little to 46, XX intersex. At puberty, these XX children, who had been raised as girls, may begin to take on male characteristics.
The person has the chromosomes of a man, but the external genitals are incompletely formed, ambiguous, or clearly female. Internally, testes may be normal, malformed, or absent. This condition is also called 46, XY with undervirilization. It used to be called male pseudohermaphroditism. Formation of normal male external genitals depends on the appropriate balance between male and female hormones. Therefore, it requires the adequate production and function of male hormones. 46, XY intersex has many possible causes:
- Problems with the testes: The testes normally produce male hormones. If the testes do not form properly, it will lead to undervirilization. There are a number of possible causes for this, including XY pure gonadal dysgenesis.
- Problems with testosterone formation: Testosterone is formed through a series of steps. Each of these steps requires a different enzyme. Deficiencies in any of these enzymes can result in inadequate testosterone and produce a different syndrome of 46, XY intersex. Different types of congenital adrenal hyperplasia can fall in this category.
- Problems with using testosterone: Some people have normal testes and make adequate amounts of testosterone, but still have 46, XY intersex due to conditions such as 5-alpha-reductase deficiency or androgen insensitivity syndrome (AIS).
- People with 5-alpha-reductase deficiency lack the enzyme needed to convert testosterone to dihydrotestosterone (DHT). There are at least 5 different types of 5-alpha-reductase deficiency. Some of the babies have normal male genitalia, some have normal female genitalia, and many have something in between. Most change to external male genitalia around the time of puberty.
- AIS is the most common cause of 46, XY intersex. It has also been called testicular feminization. Here, the hormones are all normal, but the receptors to male hormones don’t function properly. There are over 150 different defects that have been identified so far, and each causes a different type of AIS.
True, Gonadal Intersex
The person must have both ovarian and testicular tissue. This may be in the same gonad (an ovotestis), or the person might have 1 ovary and 1 testis. The person may have XX chromosomes, XY chromosomes, or both. The external genitals may be ambiguous or may appear to be female or male. This condition used to be called true hermaphroditism. In most people with true gonadal intersex, the underlying cause is unknown, although in some animal studies it has been linked to exposure to common agricultural pesticides.
Currently, surgeons can perform the medical procedure of essentially assigning the child a gender. This is typically done with the consent of the parents – who make that ultimate decision. But Senate Bill 201 (SB 201) is positing that no one except the infant can provide consent for this procedure as, “Intersex people are a part of the fabric of our state’s diversity to be celebrated, rather than an aberration to be corrected,” and “Intersex people should be free to choose whether to undergo life-altering surgeries and other treatments or interventions on their physical sexual characteristics that irreversibly, and sometimes irreparably, cause harm (SB 201, 2019).”
But in some places, intersex babies don’t have that opportunity.
Neonaticide in Africa
Let’s throw another wrench in the cogs by adding religion and spirituality to this mess. Between 2008 and 2010, Legbo Northern Cape released interviews with 90 midwives. 88 of these midwives admitted to killing newborn intersex babies. According to these women, intersex babies are seen as a bad omen from God. They’re seen as monsters, so the midwives simply eliminate them and tell the mothers the baby was stillborn.
Some of the ways these women have murdered innocent children:
- Throwing them into a river
- Bashing them on large rocks
- Leaving them in the wilderness to be consumed by wild animals
- Crushing them to death so the village can use the blood to get rich
- Snapping their necks
I feel like this isn’t far off from what America is working toward. We’re already able to terminate pregnancies up to birth if we just don’t feel like doing it anymore.
And California is now making it illegal to perform assignment surgery on intersex children. Will this increase the likelihood of terminated pregnancies?
The sudden interest in consent
Following social movements such as anti-vaxx, pro-choice/pro-life and MeToo, consent has been a hot debate among, well, everyone. What constitutes consent? When is consent needed? Why is consent needed?
Obviously, consent is a person’s verbal affirmation of a situation. And with something as sticky as gender assignment, how are we supposed to choose for these babies?
The simple answer
We can’t. Unless we create a time machine, there’s no way we can predict what our child(ren) will be like. And there’s certainly no guarantee that they’ll be comfortable with their gender.
The complicated answer
Maybe we should?
“These are not gender-reaffirming surgeries … these are children who have congenital anomalies like a cleft palate … that’s fixed. We’re restoring normal anatomy.Dr. Larry Baskin
I do feel as though we’re mincing terms here. It looks as though some social constructs often don’t acknowledge science and medicine. In terms of medical procedures, I’d usually go with the expert – the doctor.
So, is this issue social or medical?
While I do see how this issue could fit into both categories, it doesn’t seem like anyone can agree on where the line is crossed.
SB 201 states that, unless medically necessary, the surgery should be deferred until the infant is old enough to make their own decision. The surgery would be medically necessary if the issue is life-threatening or will cause a significant disability if not performed.
However, “A treatment or intervention is not medically necessary if the treatment or intervention may be safely deferred until the intersex minor can provide informed consent. Psychological factors do not constitute medical necessity for a treatment or intervention on the sex characteristics of an intersex minor.”
Why did I embolden that line? Oh, it’s probably because that pesky late-term abortion bill that was just passed took the mother’s psychological health as a reason to terminate a pregnancy up until birth.
So, we only care about (intersex) babies that are wanted by the parents? What if the parents find out their baby is intersex after birth and decide to terminate?
No easy answer
A growing issue I’ve been noticing is the amount of civilians who claim to know more about medicine than actual doctors.
“Urologists have also seemed to conflate social normalcy with medical necessity.Amy Littlefield
It’s not social normalcy urologists are conflating with medicine. It’s psychology. These doctors have seen this many times before. They understand that, growing up, children can be cruel. Hell, my nephew has been bullied for being uncircumcised. What if he was also intersex? I cannot imagine the terror he’d go through.
Can we not?
“Intersex individuals are considered individuals with a «disorder» in all areas in which Western medicine prevails. They are more or less obviously treated as sick or «abnormal», depending on the respective societyDan Christian Ghattas
Big, enormous, HUGE sigh.
- A disruption of normal physical or mental functions; a disease or abnormal condition.
- Deviating from what is normal or usual, typically in a way that is undesirable or worrying.
I’m not saying intersex people should be treated any differently than anyone else. Let me repeat that: THAT IS NOT WHAT I’M SAYING.
I’m simply saying that intersex is a disorder and it is abnormal. But that doesn’t make anyone any less of a person. We’re all part of the human race.
Children under the age of 18 who have not completed puberty should not be offered a choice of gender assignment surgery in any capacity. Minors have not developed a sense of self yet. The body is still growing and changing. This is a medical issue. It only turns social when the child is no longer a dependent.
That being said, can we please stop writing bills without consulting doctors? Can we stop assuming the motivations of others? Can we just stop pretending like we know more than people who’ve gone to school for 10 years to learn about the inner workings of the human body?
Collison, C. (July, 2015). Intersex babies killed at birth because ‘they’re bad omens’. Retrieved from https://mg.co.za/article/2018-01-24-00-intersex-babies-killed-at-birth-because-theyre-bad-omens
Intersex Society of North America. (2008). How common is intersex?. Retrieved from http://www.isna.org/faq/frequency
Kaneshiro, N, MD, MHA. (September 5, 2017). Intersex. Retrieved from https://medlineplus.gov/ency/article/001669.htm
Littlefield, A. (August 13, 2018). Intersex People Want to End Nonconsensual Surgeries. A California Resolution Is Their ‘Warning Shot’. Retrieved from https://rewire.news/article/2018/08/13/intersex-people-want-to-end-nonconsensual-surgeries-a-california-resolution-is-their-warning-shot/
Sax, L. (January 11, 2010). How common is lntersex? A response to Anne Fausto‐Sterling. Retrieved from https://www.tandfonline.com/doi/abs/10.1080/00224490209552139
SB 201. (March 25, 2019). SB-201 Medical procedures: treatment or intervention: sex characteristics of a minor. Retrieved from https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201920200SB201
Wikipedia. (n.d.). Discrimination against intersex people. Retrieved from https://en.wikipedia.org/wiki/Discrimination_against_intersex_people