The following intersex FAQ was compiled by the members of interACT youth. This is a living document that we continue to edit as necessary. Please feel free to reference and share!
What is intersex?
Intersex is an umbrella term describing people born with variations of internal and/or external sex anatomy resulting in bodies that can’t be classified as the typical male or female. We’re usually taught that sex is merely black and white, “male” or “female,” but that’s simply not true. There are a lot of awesome gray areas in the middle that could make someone intersex!
What are some intersex variations?
There are many medicalized conditions that fall under the intersex umbrella including, but not limited to: Androgen Insensitivity Syndrome (AIS), Congenital Adrenal Hyperplasia, Klinefelter Syndrome, Hypospadias, Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH), Swyer Syndrome, Partial Gonadal Dysgenesis, Ovo-Testes, Turner Syndrome, 5-Alpha Reductase Deficiency.
How common are intersex people?
Intersex people are estimated at almost 2% of the population! That’s as common as natural born redheads! We’re not rare, just invisible.
So how come I’ve never heard of intersex before?
The intersex community has a long history of shame and secrecy, for so many reasons. For starters, many doctors have told patients that they’ll never meet anyone like themselves. Sometimes they’ll even tell them not to talk about their conditions to anyone! On top of that, doctors and parents often try to “fix” intersex kid’s bodies with unnecessary surgeries, trying to make them fit into their idea of “normal.” Not to mention every variation is different, so educating the general public is hard when there is so much information to talk about.
It sounds like intersex people can be hard to care for!
They can be, but they don’t have to be. Finding a good doctor that you can really connect with is so important for intersex people. Sometimes doctors don’t know the best way to handle each specific person. We all need to be informed about our bodies, our options, and the research that’s been done so we can make the best decisions possible. Making an informed decision is the most important thing an intersex person can do, so please don’t rush into anything.
How does gender fit into intersex?
Not quite as simply as you might think! Intersex relates to biological sex (a person’s genetic traits, internal and external reproductive organs, hormones, and secondary sex characteristics). Gender is more about the way somebody feels or identifies. This means intersex individuals can identify as female, male, genderqueer, agender, two-spirit, or any other gender identities, just as non-intersex individuals do. It’s important to remember that gender is fluid, not stagnant - possibly changng during a person’s journey
How does intersex differ from transgender?
Intersex is when your biological sex doesn’t fit neatly into the male/female binary, and transgender is when your gender identity does not match your assigned sex at birth. Someone can be both intersex and transgender!
What terms can I use to talk about intersex people?
Intersex and DSD (difference of sex development) are the two current terms that most people use today. However, they both are controversial for different people. Some of our youth prefer to use intersex to describe themselves, while others are comfortable with DSD. All intersex folks have the right to self define themselves at any particular point in their journey. It’s better for people to come to their own conclusions about how they want to talk about their bodies, rather than be told or pushed into a certain dialogue. If you don’t know how someone wants to talk about their body, feel free to ask!
Can I use the word hermaphrodite?
Nope. Hermaphrodite is a harmful term that is widely considered a slur, please don’t use it. It’s a stigmatizing word that people associate with having both sets of working genitalia, which is rarely possible in humans, if at all. Some intersex folk have started reclaiming the term, but that is for them to decide and use, not for you!
What are some other terms I should know?
Ambiguous Genitalia - Genitalia that doesn’t look clearly “male” or “female.” However, no genitals look the same, and nobody’s genitalia is “ambiguous.” They’re all just genitals!
Binary - This is the idea that there are only two identities and only two sexes: male or female. Nothing in between. Do we think either of these binaries exist? Of course not!! Please see the term “spectrum.”
Dyadic - Some intersex people have started using dyadic to describe those who are not intersex (meaning, they fit the “male” or “female” binary)
Cisgender- When a person’s gender identity matches their assigned sex. For example, a person assigned female at birth and identifies as a woman is considered cisgender. This term can get confusing with intersex individuals - some use it, some don’t.
HRT (Hormone Replacement Therapy) - This is an important tool in an intersex person’s tool box. HRT ensures that an intersex person’s physical and emotional health needs are properly maintained. If someone’s hormone needs (for things like development, body regulation, or bone growth) aren’t being met, they may go on HRT to figure out the best hormone levels for their bodies.
Informed Consent - We use this term a lot, especially when talking about surgeries on intersex people. Basically, it means that nobody should be operated on without their full knowledge of circumstances, repercussions, reasoning, etc. For example, babies and children are too young to fully understand what having surgery might mean and can’t properly give informed consent. Surgery should wait until after they can make an informed decision for themselves, unless the surgery is necessary.
Preferred Pronouns - Many people (intersex or otherwise) don’t identify as a binary gender, especially when their bodies don’t line up in a typical binary box. These people might use gender-neutral pronouns like they or ze. Ask someone what their preferred pronoun is. They’ll love you for it!
Spectrums - This is the idea that both sex AND gender exist on separate spectrums from male to female. People usually lie somewhere in the middle of each, rather than falling perfectly on the male or female side.
Call out others when they say harmful things. Be our advocates where you can, but also give us a chance to speak for ourselves. Don’t speak over an intersex person, as chances are we’re a lot more familiar with these issues than you are. Check out other important intersex news and share it with your friends! Listen and try to understand our stories, as we’re pretty incredible people. :)
Emily B. is our newest Inter/Act member. Emily has the intersex/DSD condition known as Swyer Syndrome. Read her wonderful insights on her child-self and into the people around her.
This is an especially timely blog post as Facebook just recently broadened their gender categories allowing the choice of intersex. Fox “News” responded by lashing out and making light of intersex people saying, “Intersex–whatever that is”.
Inter/Act exists to give our young people a platform to amplify their voices. We don’t let the media define who we are or our experiences. We are taking the mic back and inserting our own perspective into a national discourse that doesn’t only misrepresent and not understand who we are– but one that sometimes treats our lives with undeserved disrespect.
I have a lot of experience telling people about my condition. I’ve always thought that it was kind of cool–something that made me special and unique. My parents told me to keep it a secret, but that only made it more clandestine and significant when I’d jump on a lull in the conversation at a sleepover or at summer camp and say, “I’ve got something I want to say, but you guys can’t tell anyone else.” I was a quiet kid (at least around new people) but also desperate to speak and be heard, so holding everyone’s attention the way I did when I told them I had Swyer Syndrome felt like having a superpower.
hey everyone! given the circumstances i decided to make a survey to settle this “Intersex people are/are not LGBT” deal, it would really help if you completed this short survey and shared it with everyone else. it doesnt take you more than a couple of minutes and your answers will remain anonymous. this survey is for intersex people only.
Swyers has a new quick clip up of our homie Pat Lowry’s backyard skatepark paradise. Another reason I love living in Richmond, we have really awesome people like Pat that do projects like this. He’s about halfway through covering his entire backyard in concrete.
Inter/Act member Emily B. teamed up with our coordinator Pidgeon on August 8th to lead a workshop & presentation on advocacy, collaboration & improving care with the clinical team over at Lurie Children’s Gender & Sex Development Program. We’d like to thank Lurie’s team for the wonderful opportunity and look forward to working together again soon. The following is Emily’s recap of the significant presentation.
For me, August 8th was a day of important firsts.
I was invited by Inter/Act to spend an hour talking about youth intersex advocacy and improving care with doctors in the DSD team at Lurie Children’s Hospital. That day was my first time meeting another intersex person—Pidgeon Pagonis, the youth coordinator of Inter/Act—face-to-face. It was also my first time on the other side of DSD (Difference of Sex Development) care, as an advocate sharing my experiences with this DSD (DSD is how clinicians usually refer to intersex) team.
After a morning of location mix-ups and delays, it seemed like the meeting might not happen. Just as I’d begun to lose hope, the doctors arrived smiling, introducing themselves, and settling in to listen to our presentation. They listened carefully to our thoughts, particularly intrigued by our brochures on “What We Wish Our Doctors Knew” and “What We Wish Our Parents Knew”. Pidgeon really impressed them with their thorough knowledge of current intersex advocacy efforts. While we didn’t always agree on everything, the doctors genuinely seemed to appreciate hearing our thoughts.
These doctors really impressed me. As part of my introduction I said, “I have Swyer Syndrome—I assume I don’t have to explain what that is?” However,