While LGBTQ+ visibility is higher today than ever before, there are still parts of the community that are misunderstood or forgotten. Many know what LGBTQ stands for, but often what comes after the plus is ignored.
The extended acronym, LGBTQIA+, includes ‘I’ for intersex, a community often forgotten when talking about the queer community and LGBTQIA+ Pride.
This is why it was so important, that during this past Pride Month, Orlando flew an updated version of the LGBTQIA+ flag that includes the intersex flag in it, adding the yellow triangle with a purple circle within it. With this inclusion it is also important to educate ourselves and each other on the intersex community.
According to United Nations: Free & Equal, a campaign of the United Nations Human Rights Office, people who are intersex were born with chromosome patterns or sex characteristics that do not fit the typical definition of male or female. Often confused with transgender people, intersex people are distinctly different. Differing from male and female chromosome patterns, XY and XX, intersex patterns can also be a range of other chromosome combinations including XXY, XXX, XYXY, XXXY or XO. Overall, there are more than 30 medically classified intersex variations. Some variations cause intersex traits that are visible at birth, others aren’t noticeable until puberty and some variations are not physically visible at all.
For example, according to the intersex advocacy group interACT, people with Androgen Insensitivity Syndrome are born with testes and XY chromosomes, but they are immune to androgens such as testosterone. As a result, they are unable to develop a penis and scrotum leading to genital differences like developing a vulva and clitoris or even breasts at puberty.
Another example is complete gonadal dysgenesis, or Swyer syndrome. This occurs when a baby is born with XY chromosomes but does not develop testes, rather they often develop a vulva and small uterus prenatally as well as tissue that is neither testis nor ovary, according to the interACT website.
These variations often come with a spectrum of bodily differences that make it difficult to categorize intersex individuals as either male or female. As a result of this, intersex people often face unnecessary surgeries and discrimination both in and out of the LGBTQ+ community.
Juleigh Mayfield is an intersex woman and one of the biggest intersex advocates in Florida. Over the last 10 years, she has worked to educate people on what it means to be intersex and has fought for intersex rights and equal treatment, both socially and legally. Now she is starting up her first nonprofit organization, Interclusions, to increase her range and create a safe place with resources for intersex individuals.
“It will be community based and offer help to people that are just finding out they are intersex,” says Mayfield. “We will provide a safe place for people to come to navigate with other intersex people, maybe even find people that are also suffering from their different genetic variations. Whether that be PCOS or AIS, or whether it be more direct like XXY or XXX or XO.”
Mayfield says that within the over 30 different intersex variations are also a range of different ways people, and their bodies, can be affected. This is why it can be difficult to find others dealing with the same things you are; something Interclusions looks to assist with.
Mayfield also hopes that Interclusions will help to bridge the gap between the intersex community and the rest of the LGBTQIA+ community, as well as non-intersex and cisgender people. She says that doing so can significantly help the intersex community since most people have no idea what intersex really means.
“A lot of people, even in my work, will say, ‘Oh, you’re a hermaphrodite,’ but that doesn’t exist in human form,” says Mayfield. “It’s not possible in human biology but that ends up becoming a pejorative for how people feel about it. … Or a lot of people will say, “Well that means you’re trans,’ but no. About 2% of the world’s population is intersex and only 2% of that number identifies as trans.”
While the terms are often confused with each other, hermaphrodites are very different from intersex people. A hermaphrodite is an organism that has both a fully functional male reproductive system and a fully functional female reproductive system, but this cannot occur in humans. Even within the LGBTQIA+ community this misinformation is prevalent.
“Trans individuals have started to reclaim that word, but that doesn’t make it exist,” Mayfield says. “Saying that you are [a hermaphrodite] confuses people that think that means you’re intersex. Or you’ll have people that are not really sure in the trans community, and they’ll say, ‘Oh, I’m intersex,’ but they’re not.”
As Mayfield says, intersex people are often mistaken as being transgender because they do not always look the way that non-intersex people expect them to.
“I know a man that is XXX. Phenotypically he’s all male, but his chromosomal pattern is straight female on the inside. … I also know a woman who was born phenotypically female on the outside, but at two years old they realized that she was born with testes instead of ovaries,” says Mayfield.
Confusion and misinformation like this are one of the biggest causes of a lot of intersex struggles, since most people do not understand them, they often face mistreatment or ignorance in their daily lives.
Misinformation harms the intersex community even beyond people not understanding them physically. For decades, false information has been painting a terrible picture of intersex people that has continued to alienate them for their differences.
“For XXY’s they said for the longest time that ‘they’re going to grow up to be incarcerated, they’re not going to have a lot of friends … they’re going to be mean to pets, maybe a serial killer,’” says Mayfield. “Especially in western civilization, they’ve told parents to abort us because we don’t fit the binary and nobody’s going to know what to do with us.”
Mayfield says that this type of misinformation continues the problems intersex people face because it makes people afraid of them and encourages parents of intersex children to make them fit better with what society deems to be “normal.” This leads to the biggest issue that the intersex community is trying to tackle, unnecessary surgeries.
“One of the things that the intersex community strives for is getting rid of unnecessary surgery at birth. [For example,] ambiguous genitalia or doctors telling you that you’ve got to pick one or they’re not going to fit into society … That’s part of the fear mongering,” says Mayfield.
According to UNFE, these irreversible surgeries can lead to permanent infertility, pain, loss of sexual sensation, mental suffering and depression. Mayfield gives an example of this in a friend of hers, whose testes were removed at birth because their parents chose to raise them as female.
“Those testes were made the way they were made for her body, so when she hit puberty, her body reacted the way it would have had they left the testes inside. Now she doesn’t have those, and she doesn’t have ovaries either,” says Mayfield.
In their intersex fact sheet, UNFE refers to these surgeries, which are frequently performed on people far too young to consent to them, as potential violations of “their rights to physical integrity, to be free from torture and ill-treatment, and to live free from harmful practices.”
UNFE also goes as far as to say that these surgeries should not be permitted because of the severe harm they cause to intersex people.
Many of the surgeries that some intersex youths are forced to endure are not even motivated by medical needs, rather aesthetic or social reasons are often the bigger factor. Mayfield says that it is ridiculous these surgeries are even allowed to happen.
“We should cut your penis off and make it a vagina because that looks a little better? But then that girl at five or six starts to have complications and they’re like, ‘Oh, we don’t know why but she’s developing as a boy,’” says Mayfield.
Along with unnecessary surgeries, intersex people often spend their entire lives dealing with ignorant doctors. Medical discrimination is a huge challenge that the intersex community faces. Even within the medical community, intersex people are often misunderstood, and their problems misdiagnosed or disregarded by doctors who are uninformed.
According to the UNFE fact sheet, “Health-care professionals often lack the needed training, knowledge and understanding to take into account the specific health needs of intersex persons, provide appropriate healthcare, and respect the autonomy and rights of intersex persons to physical integrity and health.”
This is something that Mayfield herself has had to endure many times in her life.
“I have to teach every doctor that I sit in front of … and say, ‘I’m not crazy, I found out at 17 that I have an extra X, and this is what’s happened to me throughout my life,’” says Mayfield.
She was misdiagnosed with adolescent hemorrhoids when she began having a menstrual cycle at 12 years old and the doctors could not understand why she was bleeding. It was not until her 40’s that Mayfield finally found out the truth after visiting the National Institute of Health for a series of exams.
Mayfield has even experienced doctors trying to come up with explanations for her ailments that were not possible, with four separate doctors asking her during an extended hospital stay if she was certain the issues were not simply caused by pregnancy.
“I was like, ‘You know I’m intersex, right?’” says Mayfield. “I’m like an easy bake oven, I don’t even have all the parts you need to make a full cake. Why would you think that?”
During the month-long ordeal, Mayfield says that a doctor even told her that had she been aborted, she would not be dealing with these issues her intersex traits have caused her.
With bodies that even doctors often don’t understand it is already difficult enough for intersex people to find the care they need. However, it is becoming even harder as gender-affirming care is fought off in states like Florida. In fact, much of the legislation against transgender people harms the intersex community as well, despite the fact that the vast majority of intersex people are not transgender. Mayfield says that a friend of hers was refused estrogen treatments that he needed because the doctors accused him of attempting to transition.
Beyond the doctors, the hospitals and government that oversee the doctors can be a problem. This means that even if an intersex person can find a doctor who understands them and is willing to help, there are other obstacles that can still stand in their way. Mayfield herself had to fight for the treatment she needed to literally save her life.
“Some of my doctors are tied to Advent Health, where it becomes a political or a religious thing,” Mayfield says. “When I went and had my orchiectomy … Advent health tried to say that it was my doctor’s way of getting around having a sex change form … But this was life or death for [me. I’d] die if we didn’t remove them.”
Despite the number of issues and roadblocks she has faced in getting the treatment she needs; this is only a small window into the huge number of complications and biological differences that intersex people can experience. This is why the roadblocks that intersex people often face when trying to get medical treatment is especially concerning, while some get by without any health issues many are faced with a lot of them.
“We could be talking to an XXY male, and he may have been born with both testes and looks really tall, has some physical aspects of being XXY, but not have any other issues or maybe he can’t have kids,” says Mayfield.
However, she was not so lucky. As an XXY woman, Mayfield was born with a partial uterus, one cracked fallopian, one ovary, one testicle, a female-sized heart, male-sized lungs, a diminished Adam’s apple and breast tissue. These widely varied sex characteristics cause issues in her body as it tries to perform many of its functions, leading to what Mayfield describes as her body “constantly fighting itself for dominance.” This has also led to a host of other health issues including lupus and osteoporosis.
“The doctors were like, ‘we’re not actually sure how you’re alive … so we’re going to have to put you on estrogen for the rest of your life,’” says Mayfield. “Which won’t cure that, it just slows down the progression of what’s fighting within my body.”
Doctors told her that if she did not get the hormone treatment, she would not live past 48. Now years later, Mayfield is 49 and in better health than ever before.
“I’m the healthiest I’ve ever been, but I still have a lot of internal problems and most intersex people don’t live beyond early 70’s,” Mayfield said. “Our lifespan tends to be cut short, and there are things you can do, but because the information is not out there you have a lot of older intersex individuals that have never had the help.”
This is why Mayfield often brings it back to education, as it is important to teach non-intersex people about intersex reality but also to teach intersex people about the struggles they may encounter and how to deal with them.
While Mayfield and other intersex advocates around the world work to continue that education, small steps like intersex inclusion in the Pride flag can go a long way in affecting people’s lives. While some don’t consider intersex as part of the LGBTQ+ community, and some intersex people don’t want to be a part of that community, Mayfield says that intersex inclusion in the acronym and especially now the flag is still very important.
“There are many people in the gay community who want to open themselves up, because love is love, and they’re willing to embrace everybody,” Mayfield says. “There are plenty of people in the intersex community that gravitate towards the gay community because where they may not know how they fit in yet in their lives, they find acceptance in that community and that’s huge.”
Inclusion of the intersex flag into the Pride flag also serves as a powerful part in helping to educate people on what intersex is, says Mayfield. More visibility on the flag can lead to people taking an interest in learning what that part of the flag represents.
Education is the easiest way for people to help the intersex community fight discrimination and mistreatment. The more people understand something, the less they are afraid of it. That’s why Mayfield feels her job as an advocate for the intersex community can never be done, regardless of how small or large the impact is, it must continue one small change at a time.
“I know I’m creating ripples that long term might make a difference. That’s important to me,” Mayfield says. “Nobody said advocacy was easy … but once it finds you, you feel like you need to keep doing it for the people behind you.”
