Please enable javascript in your browser to view this site!

Sexual Health Blogs

Battling Misinformation: What to Know About Intersex

We have seen a great deal of movement in the LGBTQIA+ community in recognition and acceptance. Whilst there is progress, a group that is often ignored or told misinformation about is intersex individuals. Intersex can be defined as an “umbrella term to refer to people who carry variations in their reproductive and sexual anatomy that differs from what’s traditionally considered male or female. An intersex person can appear to have one kind of genitalia on the outside, and another internally.” With so much ignorance and false information spread about intersex individuals, they are at harm by the medical system and uneducated individuals. 

A Brief History 

In a YouTube video by Them, Maria Tridas, an intersex individual, discusses the history of the term “intersex.” In the Oxford English Dictionary, we can see that the word has been around since the late 1700s and that before the 20th century, the term was rare and used to refer to relations “between the sexes.” It wasn’t until 1917 that Richard Goldschmidt used the term in the way we understand it today. Prejudice and abuse were still prevalent in the 1800s as is evident in the 1860s French newspapers that reported on the reclassification of Herculine Barbin, an intersex woman who was forced to live as a man and committed suicide when she was 30—Barbin was painted as a monster by the press. In the 1980s, the intersex movement began to percolate, and there was an outcry against nonconsensual “corrective” surgeries carried out on infants and children. The most prevalent date falls on October 26th, 1996, further known as Intersexual Awareness day. On this day the Intersex Society of North America (ISNA) protested a conference held by the American Academy of Pediatrics in Boston, marking the first public demonstration of intersex people in North America. Jumping forwards to 2005, Disorders of Sexual Development (DSD) were introduced in medical settings as another way to describe being intersex. This controversial term framed being intersex as being a “disorder in need of treatment” rather than a biological variation. 

Protection Laws on Non-Consensual Surgeries 

Unsurprisingly, there are few laws that work to protect individuals from non-consensual surgery as minors. Malta was the first country on the European continent to pass a law banning any kind of treatment or surgery on an intersex minor without their consent in 2015. Malta’s government further stipulated that “social considerations” are illegal grounds for justifying any medical procedure. In August 2018, California passed a resolution acknowledging that non-consensual intersex medical interventions are an abuse of Human Rights (Resolution #SCR110). However, in January 2020, a bill to ban surgery on intersex infants and children was rejected by lawmakers. Portugal followed Malta’s steps in 2019, and then Germany and Iceland in 2021. It is worth noting that the law passed in Germany that banned unnecessary surgeries on babies that present “variants of gender development” has room for loopholes that means children can still be operated on without their consent if they haven’t been formally diagnosed as intersex.

In the UK, there is no specific law regarding intersex surgeries. Many have referred to such surgeries as “non-consensual” but Hans Lindahl, communications director at InterAct, an advocacy group for intersex youth explains this isn’t quite correct. “Minors legally can’t consent, but parents are consenting to these surgeries…so parental consent right now is ‘consent.’” Valentino Vecchietti, intersex activist and designer of the 2021 Pride Progress Flag speaks further about laws around intersex protection not improving: 

“I hear time and again representatives from different countries describe the same circular, self-perpetuating problem. The medical profession won’t listen to the arguments of intersex activists appealing to human rights. Lawmakers defer to the medical profession. The medical profession sees it as its job to surgically alter intersex bodies.”

A Delayed Realization

When reviewing interviews and speeches by intersex individuals, the common threads seen were noticing that their physical development did not match their peers, and in turn, their true knowledge did not come until they were older. In an interview with Roshaante Anderson, he didn’t find out he was intersex until he was 11. As a child, Roshaante recalls adults asking him to prove his identity by pulling up his shirt— ”I thought I looked like a girl, but no one else did.” When experiencing severe abdominal pains, Roshaante went to have an ultrasound where it was revealed that he had internal testicles and ovaries. He stated: “It felt like everything made sense…I kind of already knew… my need to want to be a boy but to want to be a girl didn’t make sense to me.” Roshaante began to start living as a boy when he was 15, “I got so much more respect being a man than I did being a girl, so I thought to myself I might as well be a man then…it’s sad to say that a lot of my decision was swayed by other people’s opinions.” 

In a TedTalk titled “What I’ve Learned From Having Balls”, Emily Quinn reflects on her experience of learning that she is intersex, and the issues she ran into with the medical community. At the age of 10, she was informed that she had been born without a uterus, and had testicles instead of ovaries—but instead of being told she was intersex, the medical provider explained she had a “rare medical disorder” that “no one else has'' so it's “probably best not to talk about it.” Whilst Emily expressed that the doctor was encouraging her not to speak out from fear of bullying and judgment from others, it only reinforced the idea that something was “wrong” and needed to be kept a secret. At 18 she was told by a gynecologist that unless she operated on her vagina, she would never be able to have penetrative sex. Emily decided to postpone the operation and later found out that the gynecologist was wrong, it wasn’t true at all.

“Because she didn’t understand my body, because it was different, to her it meant it was broken and she needed to fix it.” 

It wasn’t until Emily was in college that she was informed she has “androgen insensitivity syndrome” — the term they used to describe her body. It was only then that she realized the numerous genital exams medical providers deemed “essential” were, in fact, unnecessary and an act of violation. 

Everyday Erasure 

Jahni Leggett, intersex activist and Human Rights Campaign Youth Ambassador has further called out the ways that intersex people are erased in everyday scenarios. Their experiences with engaging with the medical community is a vastly different experience, and there have been numerous cases where doctors have blacked out people’s records so they can’t see what has happened. “They (the doctors) lack the education, yet they are still willing to perform surgery.” Erasure is further seen in the language used, whether that is on forms given to fill out, or the use of certain language. Jahni explains that “in our community, hermaphrodite is more of a slur by non-intersex people, but some intersex people use it as a way of reclaiming it, and as a way of being really proud and happy about who they are.”  Jahni goes on to explain how there is still erasure and ignorance within the LGBTQIA+ community: 

“Intersex people get the least funding out of the whole community, and then for someone to put intersex on to be more inclusive but not to intersex programming doesn’t make any sense.” 

It is clear there is a great deal of work that needs to be done in order to establish genuine inclusion for intersex people, both in everyday situations and especially in the medical fields where a lack of knowledge and education is resulting in great harm against Intersex people. By working to validate and accept the experiences and existence of intersex people, we can work to erase the shame and stigma that surrounds it. 

By Stephanie McCartney