“What does it mean to be intersex?” “What does intersex look like?” “How do intersex individuals fit into the larger LGBTQIA2S community?”

These are some of the questions that the intersex advocacy organization interACT tackles on its website and outreach. Established in 2006, interACT uses “innovative legal and other strategies, to advocate for the human rights of children born with intersex traits.”

According to the organization, intersex is “an umbrella term for differences in sex traits or reproductive anatomy. Intersex people are born with these differences or develop them in childhood. There are many possible differences in genitalia, hormones, internal anatomy, or chromosomes, compared to the usual two ways that human bodies develop.”

Intersex Awareness Day is Oct. 26, but understanding and advocacy of the intersex community shouldn’t be reserved for just one day.

Maddie Moran, Director of Communications for interACT, was kind enough to answer News is Out’s questions regarding misconceptions surrounding the intersex community and how the rest of the LGBTQA2S community can help support intersex individuals.

News is Out: How has the medical community changed its attitude and approach to intersex individuals in the last 10-20 years?

Maddie Moran: The last few decades have seen historic change for the intersex community, whose civil rights push has been relatively new in the United States. A DSD consensus statement in 2006 recommended multidisciplinary teams take care of intersex babies instead of just surgeons in white coats. 

In 2020 two large children’s hospitals changed their surgical policy to delay some medically unnecessary surgeries until the child could participate in the decision. This came out of years of advocacy, including by intersex activists who were harmed by those hospitals. They are the first two hospitals in US history to change their policies against early nonconsensual surgeries, and this has been within just the last 2 years!

The medical community is also starting to acknowledge that intersex adults are lacking in knowledgeable medical professionals. Intersex needs have treated as a pediatric issue, leaving adults with scarce medical support. While many medical providers still treat intersex patients as people in need of fixing to stick to their vision of the sex binary, many more have become outspoken advocates for bodily autonomy. Change is coming!

NIO: What do you think are some of the biggest misconceptions about intersex individuals?

MM: Intersex is not a disorder—there is so much natural variation in sex characteristics, hormones, chromosomes, and more. There are plenty of women walking around not knowing they have XY chromosomes! Intersex people are nearly 2% of the population, as common as redheads. It’s normal to see variety in the appearance and function of bodies across all nature, including humanity.

Being intersex is not the same as being transgender or lesbian, gay or bisexual—although some intersex people are LGBTQ as well! Intersex is about the variations in sex characteristics that people are born with. Whether gay or straight, intersex people live under the LGBTQIA2S umbrella because we have many shared experiences, including sex-based discrimination. We see this currently in the draconian bathroom and school athletics bills, affecting both transgender and intersex children.

Intersex people don’t need to be fixed. Many of us face discrimination in healthcare, either being subjected to unnecessary cosmetic surgeries in infancy or childhood or pressured into medical changes later in life. This is often based on the discomfort from doctors and society about our appearances and the insistence we have to look, urinate and have sex a certain way, and not on our own choices for our own bodies. Bodily autonomy is key. Intersex and transgender people must have access to medical care & surgeries that they want and are asking for. Unless it’s a medical emergency (which is very rare) intersex people must be allowed to make their own choices for their bodies when they are old enough to do so.

“Intersex people don’t need to be fixed.”

Maddie Moran

NIO: How can our community better support intersex individuals?

MM: The queer community needs to really include the “I” in LGBTQIA2S — educate people around you about intersex issues, work with intersex people to make queer spaces intersex-inclusive, and opt for non-gendered language around body parts. Recognize that intersex people have our own oppressions we face—if you’re only talking about intersex people to argue against binary sex, you’re missing many more of our community’s issues. 

NIO: Are there any examples of being intersex depicted in popular culture that you find to be positive representations?

MM: There are several! MTV’s “Faking It” broke history with an intersex main character and also starred Amanda Saenz, a real-life intersex advocate playing another intersex advocate. Ponyboi is a queer film created by and starring River Gallo, an intersex advocate. Lastly, the documentary “Gender Revolution” from National Geographic is a great resource and talks to several intersex people and their parents.

Media representing intersex people needs to include intersex people & community insight or it won’t be accurate! Unfortunately, media so frequently gets it wrong, using intersex as a trope or plot twist rather than as people.

NIO: What advice would you give to someone who is intersex and looking to understand more about themselves and their community?

MM: Intersex people can really benefit from the beautiful experience of meeting other people like us. I would urge any intersex people who feel alone to get in touch with interACT Advocates or InterConnect, which hosts a yearly support meetup! Other intersex people are often the best guides to finding intersex-knowledgable care and education. It’s common for intersex people to feel alone or even to be told you are alone in your experiences—you aren’t! And you don’t need to hide yourself, your body or your identity.

This interview was conducted via email and edited for clarity and style. 

To learn more about the intersex community, find answers to questions or activities to celebrate Intersex Awareness Day, visit interactadvocates.org.

Dana Piccoli

Editor of News is Out