Heart Defects Happen, Intersexuality Does Not.

Recently a friend of mine was diagnosed with a severe heart defect which she had to have open heart surgery to correct. She’s doing better now, but her illness got me thinking about how, as a society, we perceive birth differences. We hear about those with birth defects fairly regularly, and we understand that sometimes development doesn’t happen exactly the same for everyone. But tell someone that 1 in 100 babies has a body that differs from “standard” male or female and you’re met with disbelief. Why are our hearts, brains, organs, and blood allowed to differ, but our genitalia or hormones aren’t?

Karotype by Can H.
Karotype by Can H.

First let’s get some definitions out of the way. Many people have heard the term “hermaphrodite” and believe that these people, who have both sets of reproductive organs, are the only “Intersexed” people out there. What you might be surprised to learn is that a wide variety of conditions that result in non-normal genital and/or hormonal development. Some are born with different chromosomes (1 in 1,666 have something other than XX or XY), developmental onset or regularity problems (i.e. 1 in 66 are born with late onset adrenal hyperplasia) or differences in development (1 in 770 have hypospadias, where the urethral opening is somewhere other than the tip of the penis). If you want to know more about ambiguous genitalia, check out this page which outlines some of the conditions and their possible causes.

In some sense we all know there are differences in primary and secondary sexual organs. We wonder if “size matters” because we know size differs. Boys in locker rooms eagerly share guesses on ‘cup size’ because cups come in different sizes as well. We accept that those parts of us differ. It’s just when we get to the insides that we start to assume all is the same.

Returning to hearts, it’s estimated that 1 in 125 babies has some form of congenital heart defect, ranging from mild to severe (like my friend). So comparing that with the 1 in 100 number, you have a better chance of not fitting ‘standard male’ or ‘standard female’ than a heart defect. Yet no one tells a person with a heart defect that the shortness of breath or irregular heart beat they’re experiencing is ‘in their head’.

Imagine that you were in the more common group though – the 1 in 100s. In your specific case, you were the 1 in 1,000 who was born with ambiguous genitals and having Klinefelter’s syndrom. Your sex chromosomes (XXY) aren’t typical and so the doctor decides to do surgery to give you female genitalia (Sadly one father told me that he was advised to “choose female – it’s easier” by a doctor when he was in this situation. When the father asked if they could wait for a blood test, the doctor reluctantly agreed. Doctors though, for a long time, assumed that ambiguous gender was bad for development, and pressured parents to assign a gender as quickly as possible.) So anyway, you grow up as a girl, but find yourself attracted to other girls. As we all know, life isn’t easy for someone who feels like they are a member of the wrong sex, or feels sexual attraction to a member of the same sex.You’re a lesbian, and hopefully accepted, even though with a slightly different outcome, you might have been a straight male!

So why are we, as humans, so willing to understand birth defects happen, but we rally around the idea that everyone has well-determined sexual status? As a psychologist, here are my guesses:

  • We hate ambiguity, and since sex isn’t exactly something we’re comfortable talking about, it’s very disturbing to think that variability like this exists. So we just pretend it doesn’t.
  • People in that “1 in 100” group seldom want to broadcast such a thing to the world. And even the best of friends don’t often talk about what might be different in their pants from others. You could have an intersexed friend for a lifetime and never know it. And we know that one way people become more informed is by personal connection, so no personal connection = no acknowledgement that people with differences exist.
  • We like to think we’re fully in control over who we find attractive. However as the saying goes “the heart wants what the heart wants”. In this case, the chromosomes / hormones want what they want, and it’s easier for us to say “Eh, it’s just your choice” than “Eh, I guess you’re the 1 in 100 who aren’t exactly male or female”.
  • We’re often made to feel self-conscious about our appearance. So the adolescent boy who develops breasts but is also a bit on the heavy side might believe it’s just their weight, and never finds out that there is a  hormonal or adrenal imbalance. Same goes for the girl who never develops breasts – she might just feel that it was the roll of the dice she was given, for better or worse.

Those are just some thoughts, and I’m sure there are other reasons. The question then becomes how do we go about changing these firmly held beliefs about sexual development. In the end a bit of understanding can be all it takes to start to overcome the hurtful and misinformed beliefs people hold. So next time you hear about someone who says “I just don’t feel like a boy” or meet a transexual, realize that the landscape of development is vast, and unfortunately it doesn’t always follow norms. Just like you already realize for heart defects!

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