What the intersex community wishes you knew: 'We are OK the way we are'

Have you heard of the term intersex? Do you know what it means? Have you met an intersex person?

You may not know the answers to these questions. But time to learn.

Intersex doesn't just refer to one specific trait, according to interACT: Advocates for Intersex Youth. It's an umbrella term for variations in reproductive or sex anatomy, and could show up in someone's chromosomes, genitals, testes or ovaries. People could discover they are intersex when they're born but others could not know until puberty or beyond that.

Anyone – regardless of gender identity and sexual orientation – can be intersex. Experts say that between 0.05% and 1.7% of people have intersex traits at birth, according to the United Nations.

While advocates have made in-roads against discrimination – such as intersex and nonbinary activist Dana Zzyym receiving the first U.S. passport with a gender neutral “X” marker – fears loom particularly around unwarranted medical intervention to intersex kids.

"Until large medical associations like the American Medical Association and The American Academy of Pediatrics finally support intersex affirming health care and condemn early harmful intervention on babies and children born with intersex traits, we know we must do more to empower advocates to bring about change," according to a recent statement from Kimberly Zieselman, Executive Director of InterACT.

Hear from intersex people below about everything from common misconceptions to what they wish you knew.

Important: After years of protest, a top hospital ended intersex surgeries. For activists, it took a deep toll.

Marissa Adams

Age: 29

Occupation: Communications and Support Coordinator at InterConnect Support Group

What is the most common misconception about being intersex? "Intersex people or people with intersex traits have natural variations of sex characteristics from that of a typical male or female. These include variations in chromosomes, the way our bodies utilize hormones, and variations of the internal and/or external genitals."

What do you wish people knew about the intersex community? "We are OK the way we are without early, unconsented-to medical intervention."

How has being involved with the greater intersex community made you feel? "One of the best things that has happened to me. For so long I felt like the only one in the world. Since connecting with other intersex people in person in 2015 (although I had been connected with others online for years before), I have met people I consider my greatest friends in the world. It has been comforting knowing I am not the only person who experienced some of the things I have, but I have also struggled with the reality that many of us have deep physical and psychological trauma from how we have experienced medical care."

What are some things that bring you joy? "One of my greatest joys of all is seeing and meeting young intersex children which I have had the privilege of doing through InterConnect Support Group."

Where do you recommend people go to get educated on the intersex community? "From individuals and organizations dedicated to intersex support, advocacy, and education. InterConnect Support Group, Intersex and Faith, interACT: Advocates for Intersex Youth and Intersex Justice Project all have great resources on their websites."

Did you see? LGBTQ people in need of stand-in parents at weddings, holidays find 'family' in Facebook group

Hans Lindahl

Occupation: Intersex writer and educator

Age: 29

What are the most common misconceptions about being intersex? "Intersex doesn't always mean having unique genitalia."

What do you wish people knew about the intersex community? "The intersex activism community is so vibrant and so loving. Even through tactical disagreements, everyone generally comes around in service of the future we dream of. We unite toward making sure the next generation of kids has choices. We want our next generation of kids to have the option to keep their bodies as they were born."

Where do you recommend people go to get educated on the intersex community? "Intersex Justice Project's Instagram provides great educational resources, especially on the intersections on racial justice, disability justice and other movements. I host a YouTube channel encouraging a non-medical, expansive view of sex differences. A writer named Bogi Takács keeps a great list of intersex #OwnVoices books, and a list of #OwnVoices books by Black intersex authors."

In case you missed: What does 'Two-Spirit' mean? What to know about Two-Spirit, indigenous LGBTQ identities

Bria Brown-King

Age: 29

Occupation: Director of Engagement, interACT

What are the most common misconceptions about being intersex? "That intersex people don't actually exist or that we are super rare."

What do you wish people knew about the intersex community? "That intersex experiences are not a monolith, and we come from an array of backgrounds and deserve to have our fundamental human right to bodily autonomy respected."

How has being involved with the greater intersex community made you feel? "Finding the intersex community in 2018 literally saved my life. Being a part of this community helped me find my purpose in this lifetime. For so long, I was ashamed of being intersex and couldn't understand why I was born this way until now. Now I have the opportunity to be an advocate for others who might be where I was a few short years ago."

What are some things that bring you joy? What are your favorite hobbies? "Being in community with other intersex people brings me great joy. So does cuddling with my cat, Milo after a long day of advocacy work. Currently, my hobbies include getting scuba certified, and I've been enjoying Olympic weightlifting though I've been on a hiatus these past few months."

Not a 'two-sides issue': Transgender people exist. Why is there a debate over whether they should have rights?

Anunnaki Ray Marquez

Occupation: Gender/intersex educator and speaker, master of divinity student/seminarian at Meadville Lombard Theological School; member of Intersex and Faith

Age: 54

What are the most common misconceptions about being intersex? "Due to our world being taught to conflate sex traits with gender identity as the same thing, I think the most common misconception is that all of us intersex people have a non-binary gender identity, have two genders or are 'born both.' In reality, an intersex person can have any gender identity, man/boy, woman/girl, both or neither, and our genitals don’t always match binary notions with our gender identity."

"Some surgeons in the medical complex think they can (assign) our gender identity with genital surgeries; when one truly has to ask the child what gender identity they are and see with informed consent if they genuinely need surgery or not. Some of us will need these genital and reproductive surgeries as consenting adults, but some of us will not that we are all valid."

What do you wish people knew about the intersex community? "Intersex people often receive the collateral damage of transphobia, homophobias, and queerphobia no matter how we arrive or define ourselves."

Where do you recommend people go to get educated on the intersex community? "I typically guide the groups I educate to the United Nations Intersex Fact Sheet by printing and handing it out to them. It is easy to read and uses the common language that all of us leading intersex activists, and advocates want the world to use."

Let's talk about (queer) sex: The importance of LGBTQ-inclusive sex education in schools

Drāg?n Lore Bohn

Age: 26

Occupation: Deli supervisor and intersex advocate on TikTok.

What do you wish people knew about the intersex community? "The medical abuse a lot of my community goes through, from forced gender reassignment surgery and hormone replacement therapy to the mistreatment by medical professionals during any medical care needs."

How has being involved with the greater intersex community made you feel? "Like I’m not alone."

Hmm: Ed Sheeran thought he was gay as a child: We need to talk about why

This article originally appeared on USA TODAY: Intersex: What it means, and what are common misconceptions?