Justice

What Intersex Persons Want You To Know

When you think of the word "intersex," what comes to mind?

You might think of an LGBT community member lost in the acronym, or someone located on the spectrum of gender queerness. Yet neither is fully representative of what it means to be intersex.

Intersex persons are born with reproductive and/or sexual anatomy that are not confined to male or female.

This can manifest in myriad ways, from 46 XX, Intersex—when a person's chromosomes are that of a female, while their external genitalia appears male—to Klinefelter Syndrome—where a male inherits an extra X chromosome and is unable to fully develop genitalia (without supplementary testosterone).

Furthermore, to be intersex isn’t just to have “male and female parts,” there are multiple intersex conditions associated with mixed chromosomal configurations that yield various outcomes, from hormone imbalances to delayed or changes in puberty to underdeveloped sex organs to more ambiguous genitalia. Intersexual differences are difficult for society to accept, according to intersex expert Elizabeth Reis, who noted in her book "Bodies In Doubt" that "In the United States and most other places, humans are men or they are women; they may not be neither or both. Yet not all bodies are clearly male or female."

Approximately one out of every hundred births bear an intersex child, according to PBS, a statistic akin to the number of red haired persons.

Intersex activist and collage artist Sean Saifa Wall frequently confronts this lack of understanding. "When I mention the term intersex, people don't know what that is," Wall tells ATTN:. "But when I say 'hermaphrodite' people are like, 'Oh yeah, you have both a penis and vagina!' Then I educate people that hermaphrodite is an outdated term and that it's impossible to have both."

Sean Saifa Wall explains what it means to be intersex.

And beyond the general public's lack of understanding of what it medically means to be intersex, there is a dearth of awareness of the issues that face the community, including issues of medical procedures.

When someone is born intersex, medical professionals often advise parents toward needless “corrective” surgeries that cause harm to children and can lead to genital mutilation and complications later in life.

The fight for intersex rights in America focuses on autonomy and non-consensual actions conducted on an intersex person's behalf when they are too young to make decision themselves.

This happens as a result of medical professionals—and society by default—trying to mark a person as male or female instead of something in between. This issue has become such a problem that three former Surgeons Generals called for an end of these involuntary procedures that ultimately harm people.

“One of the biggest problems is medicalization and pathologization of our bodies,” Emily Quinn, an intersex activist, explains to ATTN:. “Doctors feel like this person doesn’t fit the binary and there must be something wrong with them: it’s their job to ‘fix’ them.”

Emily Quinn on what it means to be intersex.

Outside of personal experience, Quinn has experienced this very recently after someone in her family was born intersex as well, and a doctor attempted to steer her family toward unnecessary surgeries.

“The doctors presented this to us like it was a birth defect that could be fixed automatically, glossing over it and not giving the parents a full understanding or information,” Quinn said. “This happens all over the country, where doctors are given an authority and then present things as scare tactics...It goes back to a feeling of authority and expertise.”

While intersex issues may sound unique, their fight is quite intersectional, relating to issues of consent and ownership of one’s body.

Medical autonomy for the intersex community is akin to a woman’s right to choose and the integrity of trans bodies: there is a push for society to recognize—and legitimize—people who are seen as "different."

“This issue happens a ton in the disability rights too,” Quinn says. “Their bodies are not treated as their own because they’re seen as broken or not whole. If you’re to listen to those people, they’re fine and happy and want to live their lives. That’s kind of what it is overall: this ownership and medicalization of bodies.”

Wall agrees: “The forced sterility of intersex people and the forced sterility of the disabled are definitely parallel. The medical establishment is like, ‘We don’t know what to do with these bodies so we’re going to take these corrective measures in order for people to look and appear normal,’ not caring how this affects people in their lives.”

“That’s where the crux of it is,” Quinn says. “If someone is different, they are dehumanized...That happens in general, if someone isn’t a straight, white, cisgender, able-bodied male: they are othered automatically.”

Awareness is key in the fight for intersex rights—and anyone can help in simple ways.

From sharing intersex stories, to being aware of how limited a gender binary is, being educated on intersex issues appears to be straightforward but one can take further steps in being an ally.

“Allies could put pressure on hospitals that are performing these surgeries,” Wall says. “If you have a friend who is intersex, go to the doctor with them. Maybe the medical office is not a great place for them to go alone.”

As with transgender persons, supporting gender neutral spaces is important—particularly bathrooms since these spaces can be “very binary and transphobic and intersexphobic,” according to Quinn. “If people can open their minds to how they could be isolating or othering intersex people, that’s really important,” Quinn says. “If we can start expanding our ideas and understandings, we make room for people to share and feel comfortable sharing their stories.”

Quinn also hopes for more nuanced, wide-reaching media portrayals of intersex persons in addition to figures like intersex activist and fashion model Hanne Gaby Odiele, who help to normalize intersex bodies. “Reaching people who do have a place of authority or power, who can start to have these conversations, is so important right now,” Quinn says.

Both Quinn and Wall have hope for change and see it coming very soon. “Hopefully in the next five to ten years, intersex will become a household term,” Wall says. “You may not know what it is exactly—but you’re aware of it.”

  • Correction:July 11, 2017This story has been updated with clarification on a quote from Sean Saifa Wall.
This story was first published July 7th 2017.