LGBTQ INFORMATION NETWORK │ RAINBOW OF RESOURCES

INTERSEX
 

Intersex Society of North America

PBS Video: Growing Up Intersex

How Common is Intersex?

Massachusetts: Model for Intersex Rights

Emily Quinn: What It's Like to be Intersex

TED Talk: Intersex is Awesome

Harvard Medical School: Intersex Variations

Wikipedia: Intersex Defined

BuzzFeed: Interview With Intersex People

Video: What Does Intersex Mean?

Intersex: More Than a Diagnosis

APA: Answers to Intersex Questions

Info: Sex and Gender

Born Intersex: Mx. Anunnaki Ray Maquez

Lambda Legal: Intersex Patient Rights

Between Genders: Exploring Intersex

Video Documentary 2: Real Intersex Stories

 

What is Sex?

 

"Sex" as a label describes the physical elements of one’s biology and anatomy. "Sex" used in this sense relates to a person's body and bodily functions. It is a person’s medical assignment (or identification) as manifest through reproductive organs, genitals, hormones, and chromosomes. These anatomical details are thought to define (or identify) a person as male or female.  In some cases, a person might be described as somewhere in between the two extremes and we would refer to that person as "intersex." Previously, the label "hermaphrodite" was used.

 

Our Bodies Ourselves: Separating Sex and Gender

What Makes You Male or Female?

The Way We Think About Biological Sex is Wrong

Medical Dictionary: Anatomical Sex

 

 

What is Intersex?

 

"Intersex" is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male. For example, a person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside. Or a person may be born with genitals that seem to be in-between the usual male and female types—for example, a girl may be born with a noticeably large clitoris, or lacking a vaginal opening, or a boy may be born with a notably small penis, or with a scrotum that is divided so that it has formed more like labia. Or a person may be born with mosaic genetics, so that some of her cells have XX chromosomes and some of them have XY.

 

Typically, the medical community may refer to an intersex person as having a Sexual Development Disorder (DSD). This term is purely clinical and does not address the nuances of the intersex experience.

 

Though we speak of intersex as an inborn condition, intersex anatomy doesn’t always show up at birth. Sometimes a person isn’t found to have intersex anatomy until she or he reaches the age of puberty, or finds himself an infertile adult, or dies of old age and is autopsied. Some people live and die with intersex anatomy without anyone (including themselves) ever knowing.

 

Intersex variations include Androgen Insensitivity Syndrome, Klinefelter Syndrome, Marfan Syndrome, Congenital Adrenal Hyperplasia, Vaginal Agenesis, and Gonadal Dysgenesis.

 

Time Mag: This is What Intersex Means

Video: What it's Like to be Intersex

Maria: I Happen to Like Girls, I Happen to be Intersex

Klinefelter Syndrome Explained

California Denounces Corrective Surgery on Intersex Children

Out: Intersex Supermodel Hanne Gaby Odiele

Info: Transgender

Emily Quinn: What It's Like to be Intersex

Here’s What it Really Means to be Intersex

Human Rights Watch: Doctors Need Intersex Care Standards

Colorado Issues Intersex Birth Certificates

MedLine Plus: Intersex

Secret Intersex Documentary: Neither Male Nor Female

 

ABC News Report: Intersex Children

GLAAD: Debunking Intersex Myths

Mari Wrobi: I Discovered I am Intersex When I Was 21 Years Old

Video Documentary 1: Real Intersex Stories

Lambda Legal: Intersex Patient Rights

Dani Coyle: Spotlighting the Intersex Community

Intersex People Don't Need to Be Fixed

Advocate: Intersex Myths and Misconceptions

InQueery: What Does Intersex Mean?

Emily Quinn: Androgen Insensitivity Syndrome

Info: Gender Queer

Wikipedia: Hermaphrodite

Vogue: Intersex Fashion Model Hanne Gabby Odiele

 

What is Endosex?

Endosex is a new term that means the opposite of intersex. It means non-intersex. It means that a person has innate physical sex characteristics that match what is expected for female or male bodies. Innate means that the person is born with these characteristics, including chromosomes, hormones, genitals and other anatomy.
 

Prior to the introduction of the term "endosex," a popular term was "dyadic." The term derives from the Latin word for two or pair. Some discussion has ensued as to the best term to use to refer to non-intersex people. Among the possible terms that were bandied about were perisex (peri means around) and mesosex (meso means in the middle). It was even suggested that intersex was between intrasex and extrasex.

 

 

 

According to Intersex Activist and Educator Anunnaki Ray Marquez, "endosex' is the proper word to use to describe people who were not born intersex. Endosex is a way to describe sex characteristics that categorize as typical anatomical females or males. Endosex people can have any gender identity: man, woman, both, neither. Endosex people can be transgender, gender fluid, bi-gender, tri-gender, asexual, and all the many other ways to describe gender identity. Some people use the word “dyadic” instead of endosex. "Dyadic" is not typically preferred due to it reinforcing the binary male/female binary construct that does not exist if we are to include intersex people.

Endosex Male: Is the physiological sex that produces sperm. Most male mammals, including male humans, have one Y and one X chromosomes.

Endosex Female: Is the sex of an organism, or a part of an organism, that produces non-mobile ova (egg cells). Most female mammals, including most female humans, have two X chromosomes.

 

Altersex is a catch-all term consisting of “alter”, meant here as “different” or “another possibility,” and sex, referring to physiological primary and secondary sex characteristics. Altersex refers to possible sexes that are neither endosex nor intersex, in the cases of those who go through HRT or sexual reassignment surgery of some sort to change their sex. Altersex is a word that can be used for people who are not born intersex, who alter their sex to appear intersex.

 

 

Intersex People
 

Christine Jorgensen - First Person to Undergo SRS

Mx. Anunnaki Ray Marquez - Activist, Educator, Writer

Mari Wrobi - Youth Advocate

Hanne Gaby Odiele - Belgian Fashion Model

Santhi Soundarajan - Indian Athlete
Reuben Zellman - US Rabbi and Musician

Sara Kelly Keenan - Issued First Intersex Birth Certificate in US

Caroline Cossey - English Fashion Model
Cary Gabriel Costello - US Sociology Professor

Betsy Driver - Mayor of Flemington NJ, First Intersex US Elected Official
Florian-Ayala Fauna - American Musician and Music Producer
Sarah Gronert - German Tennis Player

River Gallo - Filmmaker

Eden Atwood - US Jazz Musician

Carlett Brown Angianlee - US Navy Officer, First African American to Undergo SRS

 

 

Emily Quinn - Activist, Advocate

Morgan Carpenter - Australian Activist, Created Modern Intersex Flag

Lisa Lee Dark - Welsh Opera Singer
Dora Ratjen - German Athlete
Jemma Redmond - Irish Biotechnologist and Innovator
Veronique Renard - Dutch Author and Artist

Dana Zzyym - US Navy Veteran

River Gallo - Film Director

Ana Roxanne - Musician

Dani Coyle - Artist, Photographer

Erik Schinegger - Alpine Skier
Jim Sinclair - Autism Rights Activist
Georgina Somerset - First Openly Intersex Person in the UK 
Kimberly Zieselman - US Advocate, Attorney, and Executive Drector of InterACT

Tony Briffa - Australian Politician and Activist, World's First Out Intersex Mayor (Also: Current co-executive director of Intersex Human Rights Australia and Vice-President and former President of the Androgen Insensitivity Syndrome Support Group Australia)

 

 

Emily Quinn: What It's Like to be Intersex
TED Talk: Mx. Anunnaki Ray Maquez, Born Intersex

Teen Vogue: Teens Who Discovered They Are Intersex

Sara Kelly Keenan: First Intersex Birth Certificate

Mx. Anunnaki Ray Marquez: Website

Mari Wrobi: I Discovered I am Intersex When I Was 21 Years Old

Emily Quinn: My Coming Out Story

Intersex Supermodel Hanne Gaby Odiele

Dani Coyle: Spotlighting the Intersex Community

 

Mari Wrobi: Intersex Youth Advocate

 

Intersex people are viewed as a biological fluke, a mistake. Certainly not an identity to be celebrated. Which is why most intersex people are never told that we’re intersex. Admitting that we’re intersex would mean identifying that there is a broader community of people with a shared or similar experience that would create a sense of pride, the creation of our own culture, and our mobilization against the injustices that intersex people face. So, the word intersex is left out of most of our stories – for months, years, even decades at a time. Given this stigma, most people will never understand the absolute relief that followed the discovery that I’m intersex.

The process started for me several years after I’d already come out as transgender. Rather than being concerned when I didn’t get my period, I was elated. It was as if my prayers had been answered. My stomach and legs being hairier than my brother was a personal achievement. My higher-than-average sex drive was the social expectation for a boy my age. I liked that I didn’t need to strain my voice for it to take on a naturally deeper tone. And I even remember making a secret trip to Target so that I could buy men’s razors to shave the thick hair growing on my face.
 

My body felt like a home to the identity that I was cultivating as a boy going through puberty. But I eventually came to understand that this puberty (during which I developed the ‘wrong’ secondary sex characteristics as a result of my body producing the ‘wrong’ primary sex hormones) was an intersex puberty that I simply didn’t have the knowledge or vocabulary to describe. The dysphoria and disconnect that I felt with my assigned sex at birth and the feeling that my body was more aligned with the other binary sex was a result of being intersex, not transgender.

 

I wouldn’t have even known if it weren’t for a conversation I accidentally started with my doctor. Normally “When was your last period?” was a question I shrugged off, but one day I answered it honestly instead. “I’ve never had my period.” Finding out that you’re intersex doesn’t happen in just one conversation, though. It’s not like finding out you have the flu where there are a few, quick and easily identifiable symptoms. No, finding out that you’re intersex happens over the course of hundreds of conversations with doctors, parents, partners, and online forums full of messages asking the same question that had crossed my mind once or twice. “I’m already 18, 19, 20, and I’ve never had my period. Am I okay?! Help!” But after enough bloodwork to feel like a pin cushion and enough Googling to finally find the word intersex, I started to understand why
I always felt so different. Why I never felt like a ‘normal girl’. Why I felt dysphoria with my assigned sex and with the gender I identified as. Why I didn’t feel like I had the ‘typical’ trans experience. I breathed a sigh of relief when I finally put two-and-two together. I am intersex. The thought made me feel like I was going to be alright after all.


A few studies have looked at the intersection between intersex and LGBTQ identities. One study from 2016 found that 52% of intersex people identify as ‘non-heterosexual’. Another study found that up to 40% of intersex people experience dysphoria and transition, compared to only 10% of the general population. And, when looking at the statistics of intersex youth specifically, 75% identify as LGBTQ. Needless to say, intersex people are very integrated into the LGBTQ community – whether the ‘I’ is included in the acronym or not. As someone who identifies as non-binary and bisexual, I initially expected a positive experience within my community. But the LGBTQ community has not always been the most welcome place for intersex people.

For instance, I was used to cisgender people asking me about my genitals or which bathroom I used, but I wasn’t prepared for this to come from trans people too. Most people, whether they’re cis or trans, harbor the incorrect assumption that all intersex people have ‘ambiguous’ genitals. Within the LGBTQ community, this ambiguity is viewed with jealousy and desire, to the point where trans people tell me that they wish they were intersex. But they don’t wish they were actually intersex, because that means medical trauma, social discrimination, and ignorance like this. They either want points for existing outside of the sex binary, or ‘ambiguous’ genitals to validate their non-binary gender or androgynous presentation.

Aside from fetishization, I’ve been referred to as a hermaphrodite (a slur used against intersex people) within the LGBTQ community. I’ve been told that intersex people make up such a small percentage of the population that we’re not worth including or discussing even though intersex people make up about 1 in 40 people, the same amount of people in the population with red hair. Further, it’s often assumed that all intersex people are non-binary and, for those of us who are, since our non-binary sex matches our non-binary gender, we’re actually cisgender.

Perhaps worst of all, intersex people are routinely left out of conversations that affect us too, such as discussions on bathroom bills, reproductive rights, non-binary gender markers, coercive gendering of infants, Title IX protections, and more.

 

So, how can we make the LGBTQ community more welcome for intersex people? Easy. Use language that is inclusive of intersex experiences. Terms that are considered trans-inclusive such as ‘people with penises/vaginas’ or ‘biologically male/female’ actually exclude intersex people by focusing on the genitalia rather than its function. Instead, say what you mean. Say, ‘people who menstruate’, ‘people who can get pregnant/can get someone pregnant’, ‘people at risk of testicular cancer’, to include intersex people who can also do those things.
 

Recognize that all intersex people are different. Intersex people are just as diverse in our gender, expressions, presentations, and sexualities as non-intersex people. We can be cis or trans, straight or queer, masculine or feminine or both or neither. Don’t assume you know our identities based on the fact that we’re intersex alone.

Don’t use intersex people as ‘gotchas’. A common retort from people during transphobic arguments is ‘but if there are only two genders, then how do intersex people exist?’ Try to avoid this. Intersex people don’t exist solely to further your arguments, we are a diverse community with unique needs that deserve our own spotlight.

Don’t include us as an afterthought. At the end of the day, the debate about including the ‘I’ in the acronym is fought on both sides. But including one letter as a last-ditch effort to be inclusive doesn’t quite cut it. Unless you intend to make the community a safe, inclusive and affirming place for intersex people, then don’t simply add the ‘I’ for ally points. Do your part to stand up for intersex people and educate others on being the best intersex allies they can be before claiming inclusivity.

[Source: Mari Wrobe, Gay Times, Sept 2019]

 

Gender Fender Bender: Mari Wrobi

Mari Wrobi: I Discovered I am Intersex When I Was 21 Years Old

TED Talk: Mx.Anunnaki Ray Maquez, Born Intersex

Teen Vogue: Teens Who Discovered They Are Intersex

BuzzFeed: Interview With Intersex People

Sara Kelly Keenan: First Intersex Birth Certificate

Mx. Anunnaki Ray Marquez: Website

Emily Quinn: What It's Like to be Intersex

Intersex Supermodel Hanne Gaby Odiele

Dani Coyle: Spotlighting the Intersex Community

 

 

Anatomy and Intersex

Which variations of sexual anatomy count as intersex? In practice, different people have different answers to that question. That’s not surprising, because intersex isn’t a discreet or natural category.

What does this mean? Intersex is a socially constructed category that reflects real biological variation. To better explain this, we can liken the sex spectrum to the color spectrum. There’s no question that in nature there are different wavelengths that translate into colors most of us see as red, blue, orange, yellow. But the decision to distinguish, say, between orange and red-orange is made only when we need it (like when we’re asking for a particular paint color). Sometimes social necessity leads us to make color distinctions that otherwise would seem incorrect or irrational, as, for instance, when we call certain people “black” or “white” when they’re not especially black or white as we would otherwise use the terms.

In the same way, nature presents us with sex anatomy spectrums. Breasts, penises, clitorises, scrotums, labia, gonads (all of these vary in size and shape and morphology). So-called “sex” chromosomes can vary quite a bit, too. But in human cultures, sex categories get simplified into male, female, and sometimes intersex, in order to simplify social interactions, express what we know and feel, and maintain order.

 

So nature doesn’t decide where the category of “male” ends and the category of “intersex” begins, or where the category of “intersex” ends and the category of “female” begins. Humans decide. Humans (today, typically doctors) decide how small a penis has to be, or how unusual a combination of parts has to be, before it counts as intersex. Humans decide whether a person with XXY chromosomes or XY chromosomes and androgen insensitivity will count as intersex.

Research conducted by the Intersex Society of North America finds that doctors’ opinions about what should count as “intersex” vary substantially. Some think you have to have “ambiguous genitalia” to count as intersex, even if your inside is mostly of one sex and your outside is mostly of another. Some think your brain has to be exposed to an unusual mix of hormones prenatally to count as intersex. So that even if you’re born with atypical genitalia, you’re not intersex unless your brain experienced atypical development. And some think you have to have both ovarian and testicular tissue to count as intersex.

 



Rather than trying to play a semantic game that never ends, the ISNA (Intersex Society of North America) takes a pragmatic approach to the question of who counts as intersex. They work to build a world free of shame, secrecy, and unwanted genital surgeries for anyone born with what someone believes to be non-standard sexual anatomy.

By the way, because some forms of intersex signal underlying metabolic concerns, a person who thinks she or he might be intersex should seek a diagnosis and find out if she or he needs professional healthcare.

 

Intersex Society of North America

Emily Quinn: What It's Like to be Intersex

GLAAD: Debunking Intersex Myths

How Common is Intersex?

Massachusetts: Model for Intersex Rights

Intersex Surgeries: Viginoplasty and Clitorectomy

Info: Transgender

Mari Wrobi: I Discovered I am Intersex When I Was 21 Years Old

Video: What Does Intersex Mean?

Androgen Insensitivity Syndrome Explained

The Way We Think About Biological Sex is Wrong

Video Documentary 2: Real Intersex Stories

Sara Kelly Keenan: First Intersex Birth Certificate

Advocate: Intersex Myths and Misconceptions

TED Talk: Intersex is Awesome

 

Teen Vogue: Teens Who Discovered They Are Intersex

InQueery: What Does Intersex Mean?

Between Genders: Exploring Intersex

Intersex Documentary: Neither Male Nor Female

Out: Intersex Supermodel Hanne Gaby Odiele

Wikipedia: Intersex Defined

Info: Gender Expression

Intersex Surgeries: Gonadectomy

Dani Coyle: Spotlighting the Intersex Community

Video Talk: What is Intersex

Intersex: More Than a Diagnosis

APA: Answers to Intersex Questions

Emily Quinn: Intersex Experiences

Intersex Human Rights Australia

Katie Talks to Oprah: Growing Up Intersex

Intersex People Talk: What It's Like to Be Intersex

 

Intersex Presentations

Intersex is an umbrella term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male. For example, someone can be born with the appearance of being male (penis, scrotum), but have a functional female reproductive system inside.

 

 

There are many examples of how intersex can present itself, and here are some statistics from the Intersex Society of North America that describe the frequency of intersex births.

 

--Total number of people whose bodies differ from standard male or female  --  One in 100 births
--Total number of people receiving surgery to “normalize” genital appearance  --  One or two in 1,000 births

Examples:

--One in 1,666 births        --Not XX and not XY 
--One in 1,000 births        --Klinefelter Syndrome (XXY)
--One in 13,000 births      --Androgen Insensitivity Syndrome
--One in 130,000 births     --Partial Androgen Insensitivity Syndrome
--One in 13,000 births       --Classical Congenital Adrenal Hyperplasia
--One in 6,000 births        --Vaginal Agenesis
--One in 83,000 births       --Ovotestes
--One in 150,000 births     --Complete Gonadal Dysgenesis
--One in 2,000 births        --Hypospadias (urethral opening in perineum or along penile shaft)
--One in 770 births           --Hypospadias (urethral opening between corona and tip of glans penis)

--One in 110,000 births     --Idiopathic (no discernable medical cause)
--One in 66 individuals      --Late onset adrenal hyperplasia


Also:

--Iatrogenic (caused by medical treatment, for instance progestin administered to pregnant mother)
--5 alpha reductase deficiency
--Mixed gonadal dysgenesis

[Source: Intersex Society of North America]

 

Harvard Medical School: Intersex Variations

Mayo Clinic: Klinefelter Syndrome

Video Documentary 1: Real Intersex Stories

Living with XXY: Spreading Positivity and Awareness

Famous People with Klinefelter Syndrome

Video Documentary 2: Real Intersex Stories

Klinefelter Syndrome Explained

This is Me with Klinefelter Syndrome
Celebrities with Klinefelter or Marfan Syndrome

 

 

Intersex Supermodel: Hanne Gaby Odiele

Top fashion model Hanne Gaby Odiele revealed that she is intersex, saying that she hopes speaking out will help break a taboo. She was born with undescended testicles, which were removed when she was 10 after doctors warned that they could cause cancer.

Intersex people are born with a mixture of male and female sex characteristics. According to the United Nations, the condition affects up to 1.7% of the world's population.

Ms Odiele, originally from Belgium, was born with androgen insensitivity syndrome (AIS). "It is very important to me in my life right now to break the taboo," she said in an interview. "At this point, in this day and age, it should be perfectly all right to talk about this."

At 10, Ms Odiele had surgery to remove her testes. "I knew at one point after the surgery I could not have kids, I was not having my period. I knew something was wrong with me," she said. She had additional surgery at 18 to reconstruct her vagina. But she said the procedures caused her distress and she wanted to speak out in part to discourage other parents from putting their children through perhaps unnecessary surgery.

Ms Odiele's husband, John Swiatek, also a model, said he was "incredibly proud" of his wife for speaking out. "I am very impressed with her decision to advocate for intersex children in order to give them an opportunity to make up their own minds about their bodies, unlike the lack of options and information Hanne and her family (and many others) were given," he said.

Her decision to go public about her condition and become a "spokesperson and advocate for the intersex community" has been praised by the fashion magazine Vogue as "an act of enormous courage". "Odiele is exploring uncharted territory," it commented, "as it is impossible to identify even one well-known person in any field who is openly intersex."

 

Out: Intersex Supermodel Hanne Gaby Odiele

USA Today: Model Hanne Gaby Odiele Reveals She is Intersex

Vogue: Intersex Fashion Model Hanne Gaby Odiele

BBC: Model Hanne Gaby Odiele Reveals She is Intersex

BuzzFeed: Interview With Intersex People

 

Intersex Defined

According to the UN Office of the High Commissioner for Human Rights, intersex people are born with sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies. Intersex is an umbrella term used to describe a wide range of natural bodily variations. In some cases, intersex traits are visible at birth while in others, they are not apparent until puberty. Some chromosomal intersex variations may not be physically apparent at all.

 



The Foreign Affairs Council of the Council of the European Union defined intersex in guidelines on the promotion of human rights in foreign affairs (2013) this way: "The term intersex covers bodily variations in regard to culturally established standards of maleness and femaleness, including variations at the level of chromosomes, gonads and genitals." A more medicalized definition describes biological sex as determined by five factors present at birth:

--number and type of sex chromosomes
--type of gonads (ovaries or testicles)
--sex hormones
--internal reproductive anatomy (uterus in females)
--external genitalia

People whose five characteristics are not either all typically male or all typically female at birth are intersex. Intersex traits are not always apparent at birth. Some babies may be born with ambiguous genitals, while others may have ambiguous internal organs (testes and ovaries). Others will not become aware that they are intersex unless they receive genetic testing, because it does not manifest in their phenotype.

 

 

Sex Assignment

 

The acronyms AFAB and AMAB refer to a person's medical assignment, physical features, biological elements, and anatomical manifestations regarding sex.

 

AFAB - Assigned Female At Birth

AMAB - Assigned Male At Birth

DFAB - Designated Female At Birth

DMAB - Designated Male At Birth

CAFAB - Coercively Assigned Female At Birth

CAMAB - Coercively Assigned Male At Birth

UAAB - Un-Assigned At Birth, used where a person was not assigned male or female at birth

 


Sex assignment is the determination of an infant's sex at the time of birth. In the majority of births, a relative, midwife, nurse or physician inspects the genitalia when the baby is delivered, and sex and gender are assigned, without the expectation of ambiguity.

 

Sex assignment at birth usually aligns with a child's anatomical and biological sex. The number of births where the baby does not fit into strict definitions of male and female may be as high as 1.7%, of which 0.5% are due to visibly ambiguous genitals.  Other reasons include atypical chromosomes, gonads, or hormones. These conditions are collectively called intersex or disorders of sex development, and may complicate sex assignment. Reinforcing sex assignments through surgical or hormonal interventions may violate the individual's human rights.

The act of assignment carries the implicit expectation that future gender identity will develop in alignment with the physical anatomy, assignment, and rearing. In the majority of cases, sex assignment matches the child's gender identity. If sex assignment and gender identity do not align, the person may be transgender or gender non-conforming. The sex assignment of an intersex individual may also contradict their future gender identity.

 

 

Time Mag: This is What Intersex Means

Video: What it's Like to be Intersex

Info: Gender Queer

Wikipedia: Sex Assignment

Mari Wrobi: I Discovered I am Intersex When I Was 21 Years Old

Video Documentary 1: Real Intersex Stories

Intersex Explained: Androgen Insensitivity

Lambda Legal: Intersex Patient Rights

TED Talk: Intersex is Awesome

Intersex Documentary: Neither Male Nor Female

Here’s What it Really Means to be Intersex

BuzzFeed: Interview With Intersex People

Klinefelter Syndrome Explained

Human Rights Watch: Doctors Need Intersex Care Standards

Maria: I Happen to Like Girls, I Happen to be Intersex

Sara Kelly Keenan: First Intersex Birth Certificate

Video: The Way We Think About Biological Sex is Wrong

Teen Vogue: Teens Who Discovered They Are Intersex

InQueery: What Does Intersex Mean?

Info: Sex and Gender

Intersex People Talk: What It's Like to Be Intersex

Emily Quinn: What It's Like to be Intersex

MedLine Plus: Intersex

Intersex People Don't Need to Be Fixed

Advocate: Intersex Myths and Misconceptions

Video Talk: What is Intersex

Wikipedia: Hermaphrodite

Vogue: Intersex Fashion Model Hanne Gabby Odiele

PBS Video: Growing Up Intersex

 

Biological Combination

 

Some people are born with a mix of male and female biological traits that can make it hard for doctors to assign them a male or female sex. These people are intersex.

 

 What does intersex mean?  The intersex definition is a person is born with a combination of male and female biological characteristics, such as chromosomes or genitals, and that can make it difficult for doctors to assign their sex as distinctly male or female.

 

Being intersex is a naturally occurring variation in humans, and isn’t a medical problem. It’s also more common than most people realize. It’s hard to know exactly how many people are intersex, but estimates suggest that about 1 in 100 people born in the US is intersex.

 

 

There are many different intersex variations. Some intersex people have ambiguous genitalia or internal sex organs, such as a person with both ovarian and testicular tissues. Other intersex people have a combination of chromosomes that is different than XY (male) and XX (female), like XXY. And some people are born with what looks like totally male or totally female genitals, but their internal organs or hormones released during puberty don’t match.

 

If a person is born with intersex genitalia, they might be identified as intersex at birth. For people born with more clearly male or female external genitals, they might not know they’re intersex until later in life, like when they go through puberty. Sometimes a person can live their whole life without ever discovering that they’re intersex.

 

 

What happens when someone is born intersex?  Awareness of intersex conditions is growing. In the past, when a baby was born intersex, doctors and the family would decide on a gender and raise the baby as that gender (either male or female). It was common for surgery to be done on the baby’s genitals and also for the child to be given male or female hormones as they went through puberty. But of course sometimes the gender they picked didn’t match the gender identity the young person grew up to have.

 

So today, more and more people believe unnecessary surgery and other medical interventions should be postponed until intersex people are old enough to decide for themselves what gender they identify with and what, if any, treatments they want.

 

If you have a child who is intersex, open conversation about gender is especially important throughout your child’s life, whether or not your child has gender-assignment surgery. It can help your child develop a healthy gender identity and body image.

 

[Source: Planned Parenthood]

 

 

Time Mag: This is What Intersex Means

Androgen Insensitivity Syndrome Explained

Video: What it's Like to be Intersex

Info: Transgender

Emily Quinn: Androgen Insensitivity Syndrome

Here’s What it Really Means to be Intersex

ABC News Report: Intersex Children

Dani Coyle: Spotlighting the Intersex Community

Quigley Scale: Phenotypic Grading of Genitalia

MedLine Plus: Intersex

Intersex People Don't Need to Be Fixed

Katie Talks to Oprah: Growing Up Intersex

Wikipedia: Hermaphrodite

Info: Gender Expression

Video: The Way We Think About Biological Sex is Wrong

Vogue: Intersex Fashion Model Hanne Gabby Odiele

AIS: Androgen Insensitivity Syndrome

Video Documentary 2: Real Intersex Stories

 

Klinefelter Syndrome

 

Klinefelter Syndrome (KS), also known as XXY male (or 47XXY), is a condition that occurs in men who have an extra X chromosome. They are typically referred to as genderless, intersex, or hermaphroditic.  Klinefelter Sydrome is classified as a "Karyotype" variation.

 

The primary features are infertility and small testicles. Often, symptoms may be subtle and many people do not realize they are affected. The syndrome can affect different stages of physical, language, and social development. Sometimes, symptoms are more prominent and may include weaker muscles, greater height, poor coordination, less body hair, breast growth, and less interest in sex. Often it is only at puberty that these symptoms are noticed. Intelligence is usually normal. However, reading difficulties and problems with speech are more common.

 

 

The most common symptom is infertility. Boys may be taller than other boys their age, with more fat around the belly. After puberty, KS boys may have...  Smaller testes and penis...  Breast growth...  Less facial and body hair... Reduced muscle tone...  Narrower shoulders and wider hips...  Weaker bones...  Decreased sexual interest... Lower energy.


KS males may have learning or language problems. They may be quiet and shy and have trouble fitting in.


 

A genetic test can diagnose KS. There is no cure, but treatments are available. It is important to start treatment as early as possible. With treatment, most boys grow up to have normal lives. Treatments include testosterone replacement therapy and breast reduction surgery. If needed, physical, speech, language, and occupational therapy may also help. Other medical conditions that are closely related to Klinefelter Syndrome are Marfan Syndrome and Androgen Insensitivity Syndrome.

 

Harvard Medical School: Intersex Variations

Mayo Clinic: Klinefelter Syndrome

Video Documentary 1: Real Intersex Stories

TED Talk: Intersex is Awesome

Living with XXY: Spreading Positivity and Awareness

Famous People with Klinefelter Syndrome

Video Documentary 2: Real Intersex Stories

Klinefelter Syndrome Explained

This is Me with Klinefelter Syndrome
Celebrities with Klinefelter or Marfan Syndrome

 

Classification of Intersex Variations

 

There are four classifications of intersex variations: Karyotype, Gonads, Genitalia, Hormonal Milieu.

Karyotype

--Klinefelter Syndrome (XXY)

--Turner Syndrome (XO)

--Mosaicism (XX/XY)

Gonads
--Gonadal Dysgenesis (Swyer’s Syndrome)
--Ovotesticular Syndrome

Genitalia
--Mϋllerian Agenesis (MRKH)
--Hypospadias
--Penile Agenesis or Microphallus

Hormonal Milieu
--Androgen Insensitivity Syndrome (AIS)
--Congenital Adrenal Hyperplasia (CAH)
--5-Alpha Reductase Deficiency (5-ARD)

 

[Source: Dr. Katharine Baratz Dalke, Director of Office for Culturally Responsive Health Care Education, Asst Professor of Psychiatry & Behavioral Health, Penn State College of Medicine, March 2020]

 

 

Harvard Medical School: Intersex Variations

Mayo Clinic: Klinefelter Syndrome

Video Documentary 1: Real Intersex Stories

Living with XXY: Spreading Positivity and Awareness

Emily Quinn: Androgen Insensitivity Syndrome

Famous People with Klinefelter Syndrome

Video Documentary 2: Real Intersex Stories

Klinefelter Syndrome Explained

This is Me with Klinefelter Syndrome
Celebrities with Klinefelter or Marfan Syndrome

 

Intersex Vs. Hermaphrodite

 

There’s a lot of misconceptions about what it means to be intersex, and how intersex people differ from hermaphrodites.

 

Hermaphrodites are living things that have fully functioning sets of “male” AND “female” reproductive anatomy, either at the same time, or at different times during their life cycles.  They include various species of plants, fish, mollusks, and other little beasties, but not humans.  It’s biologically impossible for humans to have full, functional sets of “M” and “F” reproductive anatomy, so we aren’t hermaphrodites.

 

Intersex people, on the other hand, are those that have a mix of traits traditionally considered “male” or “female” (and sometimes, traits that are atypical for males or females) in the same body.  For example, I have breasts and a vagina (“F” traits) and also have XY chromosomes and was born with testes (“M” traits).  Some intersex people may also have traits such as ovotestes (gonads with both testicular and ovarian tissue), chromosome types like XXY, or a phalloclitoris that is sometimes described as a large clitoris or a small penis.

 

 

Here’s a scientific fact: The penis and the clitoris derive from the same developmental tissue, hence, the term phalloclitoris. The term “ambiguous genitalia” is often used here.  In actuality, everyone’s genital form is just as real as everyone else’s, no one’s is “ambiguous.” 

 

There’s a ton of variation in what our bodies look like and how they function.  Think about the people you know and how different everyone’s body and build is, even though we all have bodies.  It’s the same thing for intersex people. There is a variety of ways our bodies can look in terms of what traits we do and don’t have, what our bodies do and don’t do.  Intersex is really an umbrella term for the many different, distinct ways bodies can be.  Even within a form of intersex, there can be a lot of variation.

 

So, why do folks sometimes confuse intersex people with hermaphrodites?  In short, because of history.  Doctors applied this label to intersex people several centuries ago, and calling intersex folks “hermaphrodites” is really problematic for the following reasons:

 

 

--It’s not biologically accurate.

 

--The term derives from Greek mythology where the kid of Hermes and Aphrodite (Hermaphroditus) basically gets attacked and fused together with this water nymph.  And together, they form a “half-male, half-female” being. So, calling intersex people “hermaphrodites” implies that we’re not real, that we’re mythical creates that don’t exist.  That’s both inaccurate and offensive.

 

--Intersex people associate this term with the stigmatizing cosmetic procedures clinicians performed (and sadly, routinely perform today) on intersex kids without their consent, with the idea that surgeries and other procedures will make us LOOK like “normal boys and girls,” so we’ll BE normal boys and girls.  I probably don’t need to tell you how totally messed up this is.  This is what intersex activists are working toward:  to end these unnecessary, harmful procedures and ensure our right to keep the healthy, beautiful bodies we’re born with.  Intersex isn’t a medical condition, and we DON’T need fixing.

 

Even though it’s widely considered offensive and not-okay to refer to intersex people as “hermaphrodites,” some intersex folks have reclaimed the term as a positive way to engage with other intersex people.  For example, I get “herm hugs” from some of my intersex friends, and one intersex activist I know, who’s a lesbian, has referred to herself as a “hermaphrodyke.” 

 

[Source: Claudia Astorino, Everyone is Gay]

 

 

Time Mag: This is What Intersex Means

Video: What it's Like to be Intersex

GLAAD: Debunking Intersex Myths

TED Talk: Intersex is Awesome

Intersex Documentary: Neither Male Nor Female

Info: Transgender

Here’s What it Really Means to be Intersex

Dani Coyle: Spotlighting the Intersex Community

Between Genders: Exploring Intersex

Massachusetts: Model for Intersex Rights

Sara Kelly Keenan: First Intersex Birth Certificate

Video Documentary 1: Real Intersex Stories

Info: Sex and Gender

Human Rights Watch: Doctors Need Intersex Care Standards

InQueery: What Does Intersex Mean?

Colorado Issues Intersex Birth Certificates

Emily Quinn: Intersex Experiences

MedLine Plus: Intersex

BuzzFeed: Interview With Intersex People

Info: Gender Expression

Video: What Does Intersex Mean?

Lambda Legal: Intersex Patient Rights

PBS Video: Growing Up Intersex

Video Talk: What is Intersex

Intersex People Don't Need to Be Fixed

Info: Gender Queer

Wikipedia: Hermaphrodite


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