When a baby is born, the question always is: is it a boy or a girl?
But what if the baby is born with sex characteristics that don’t match up with the medical definition of what ‘male’ or ‘female’ is?
That’s intersex, and there are a bunch of misconceptions about it.
The reason there are so many myths is that very few people know what intersex actually is.
But why is it so unknown? Many intersex people suffered needless medical intervention as a child. Many fear speaking out.
But are intersex people a part of the LGBT community? Some would say no. But if the community is intended to represent sex and gender minorities, and you think of the language a lot of what they hear, then they are definitely part of the club.
A lot of hateful speech (intersexphobia or interphobia) intersex people hear includes: ‘It’s unnatural’, ‘you should be ashamed’, ‘you need fixing’, or even ‘you’re an abomination’.
To help bust these myths, I spoke with Kimberly Zeizelman, attorney, advocate and executive director of interACT – one of the world’s largest intersex organizations.
Myth 1: Intersex people don’t exist
Intersex people make up 1.7% of the population.
The word, intersex, is an umbrella term. There are a lot of different ways you could be considered intersex.
These sex ‘characteristics’ could involve a large clitoris, a person being born with internal testes, no vagina or a micropenis.
Hypospadia, or being born with the pee-hole on the underside of the penis instead of the tip, is another condition.
Surgery is often done on babies and young people needlessly, without consent, and for cosmetic reasons. Intersex groups are fighting for people to be given the right to be allowed to grow up without medical intervention. If they want to seek surgery at an age they can consent to it, that’s their choice.
‘There is a lot of shame when it comes to intersex people,’ Kimberly said.
‘We have to stand up and say we aren’t medical disorders. We’re not ashamed of this, we’re not going to need “fixing”.
‘A lot of the language is similar in the LGBT community when we talk about so-called ‘gay conversion’ therapy. That’s essentially what doctors and parents are doing who are driving the surgery.
‘We hear from doctors confidentially saying to us, “we’re not always comfortable cutting off a girl’s clitoris for cosmetic reasons”, but the parents insist on it and threaten to go somewhere else if they don’t do it.’
Myth 2: Intersex people are the same as transgender people
Think of sex, as in genitals, as a spectrum like gender, orientation and expression.
Like bisexual, pansexual and asexual are in the middle of a spectrum of sexual orientation, intersex fits in between male and female genitalia.
Just because you’re intersex, it doesn’t mean you can’t also consider yourself trans, straight, gay, bi, or whatever.
Your sexual organs have nothing to do with how you consider your gender or which gender(s) you find attractive.
‘The danger of intersex being aligned with the LGBT community is there’s an assumption that it’s to do with sexual orientation,’ Kimberly said.
‘That’s the issue with transgender as well, which is not a sexual orientation.
‘Intersex is just a physical state of being. It’s how you were born. Transgender is how you were born as well, but with your mind not matching up with your body.
‘We’re in the same boat. It’s the education we’re all doing is on the difference between sex and gender and orientation.’
Myth 3: All intersex people consider themselves non-binary
If you are cisgender and non-intersex, you’re likely very used to your genitals matching up with your gender identity. And that’s how it’s been for all your life that your penis makes you a man, or your vagina makes you a woman.
But this doesn’t apply to everyone. Transgender people’s gender identity, for example, doesn’t correlate necessarily with the sex they were assigned at birth.
So you might think every intersex person automatically is non-binary or genderqueer and considers themselves bisexual.
But they don’t. Every person is different.
‘Many don’t feel male or female describes themselves adequately so they use genderqueer or non-binary,’ Kimberly added.
‘Recently California passed a state-wide law to allow for non-binary markers on all legal documents. This is definitely big news.
‘It’s also great news for our non-intersex non-binary friends and friends in the trans community who are wanting to change their gender marker but not wanting to go through the hoops to do that or go through the surgery to do that.’
Myth 4: Intersex people need ‘fixing’
Tiger Devore, a clinical psychologist, was born with hypospadia – with his pee-hole on the underside of his penis. If he had been left alone, he would have to sit down to urinate.
But because doctors pushed needless intervention, he has experienced over 20 surgeries and four full reconstructions. He says, ‘all the surgeries I suffered up to age 19 were unnecessary failures’.
‘The concern there is a not a medical concern – it’s a social concern,’ Kimberly said.
‘Surgeons say they can fix it and they’ll never remember this and to do it so they won’t be mocked by other boys. Penises grow. And then there is a need for constant surgeries and it continues to leave scar tissue.’
She added: ‘Who made up the rule men stand up to pee? Why is that worth subjecting your child to very invasive and irreversible surgeries throughout their lives.’
For Kimberly and the rest of the interACT team, they are up against the medical industry. Their group is small, and can only do so much.
Myth 5: Surgery is the ‘best option’ for an intersex child
You might think doctors know what is best for an intersex child, but the reality is many have no idea how to treat them.
‘If you ask them, they might have had a small paragraph in their medical textbooks,’ Kimberly said. ‘There’s this real lack of understanding.’
There are influential policy makers, according to the interACT executive director, who are trying to stand up and say enough is enough.
‘[Intersex] is not a quick soundbite to describe,’ she said.
‘We’re not going to be changing the hearts and minds of lawmakers, and getting to the institutions, until we are also changing the hearts and minds of parents and brothers and sisters. It’s about people understanding we exist.’
Myth 6: Operating on intersex children is illegal
Operating on a baby for a needless medical procedure sounds like it should be illegal, right?
However these surgeries are currently only illegal in one country in the world – Malta. There is legislation pending in Portugal. Chile briefly had complete legislation protecting intersex children, but this was later changed.
Intersex groups believe children should have the right to body autonomy. No one is fighting against necessary medical procedures, like if a person’s hypospadia means they’re unable to urinate. But there is no need to, for example, reduce someone’s slightly bigger clitoris.
In June this year, three former US Surgeons-General called for an end to forced medical surgeries on young intersex people.
‘We felt it was massive,’ Kimberly said. ‘We thought this would change it and nothing has happened.
interACT also hoped the UN High Commissioner of Human Rights, who made a statement in Geneva about the need to protect intersex people, would make a difference.
‘It certainly got people’s attention particularly those who are doing these surgeries. Has it stopped? Do I have evidence anyone has told me this has changed their point of view. Unfortunately not,’ Kimberly said.
Myth 7: There are no fights for intersex people to win
Ultimately the most pressing issue is stopping forced unnecessary cosmetic and irreversible medical surgeries on babies and children.
There is also a need to fight for non-binary to be legally recognized, and this will undoubtedly help intersex people.
But there is also need for visibility, and to change those hearts and minds.
Large LGBT organizations like GLAAD and Stonewall don’t cover intersex issues. Gay Star News does include intersex in our coverage, as we believe in covering every sex and gender minority. This means the number of intersex advocates remain small.
‘We have been successful in doing a lot with very little,’ Kimberly said.
‘Getting the message out, it’s important to hear from young people. We’re working with a project for interACT youth providing peer connection, leadership development, to advocate for themselves. These young people and their voices are the future.’