I realize that intersex people are largely a mystery. What is intersex? Who are we? How do I talk to intersex people? I’ve got you with some answers to common questions I get.

What is intersex?

Intersex is an umbrella term for people affected by a variety of medical conditions that biologically place them somewhere between male-female binary.

How uncommon is intersex?

This is up for some debate. Generally, the figure of 1.7% of births is bandied about. Really, the figure is nearly impossible to nail down. We aren’t studied enough, and some intersex conditions don’t present until puberty. For more information, see ISNA’s explanation.

What are the intersex medical conditions?

From the Intersex Society of North America:

• 5-alpha reductase deficiency

• Androgen Insensitivity Syndrome (AIS)

• Aphallia

• Clitoromegaly (large clitoris)

• Congenital Adrenal Hyperplasia (CAH)

• gonadal dysgenesis (partial & complete)

• hypospadias

• Klinefelter Syndrome

• micropenis

• mosaicism involving "sex" chromosomes

• MRKH (Mullerian agenesis; vaginal agenesis; congenital absence of vagina)

• ovo-testes (formerly called "true hermaphroditism")

• Partial Androgen Insensitivity Syndrome (PAIS)

• Progestin Induced Virilization

• Swyer Syndrome

• Turner Syndrome

What do I do if my child is born with one of these conditions?

First off, I am not a medical professional. Do not misconstrue my advice for the advice of a medical professional.

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Many of these conditions are noticed at birth, while others appear at puberty (or even prevent puberty). Speak to your doctors. Get second opinions. Remember the adage, “If it can pee, let it be” when it comes to intersex infants. Do everything you can to avoid medically unnecessary procedures until your child is old enough to be part of the conversation.

What are acceptable and unacceptable terms?

Acceptable:

• Intersex - It’s what we are!

• LGBTQIA+ - Seriously, whenever someone keeps going after the T or Q, it makes me so happy to feel included.

• DSDs - An acronym for disorders of sex development, this is the clinical umbrella term for our conditions.

Unacceptable:

• Hermaphrodite - Considered reductive and dehumanizing.

• It - I mean as a pronoun. Like with anyone, check their pronouns. Intersex conditions can certainly have an effect on someone’s gender identity.

How can I get more information?

Check out my pages on Intersex in the News and Intersex Resources for news headlines, books, and films to check out.

Have more questions? Use the chat function here on Substack!

Are you intersex? I’d love to chat with you because my story is far from the only intersex story. We all need to share our stories, even if they’re anonymous. Reach out. Let’s fight the erasure of intersex people together.