What Is Intersex

Intersex is an umbrella term used to describe a wide variety of natural bodily characteristics that don’t fit neatly into strict medical binary definitions of male and female. Intersex variations can be genital, chromosomal, or gonadal and apparent at birth, puberty or not at all

Experts estimate that between 0.05% and 1.7% have some sort of intersex variation.

To put that in perspective, people with red hair make up about 2% of the population as do people with green eyes.

While intersex and transgender are not the same thing, there are intersex people that identify as transgender. Intersex people may identify as male, female or neither, and can be straight, gay, lesbian, bi or asexual.

The word intersex was coined in 1917 by German-born geneticist Richard Goldschmidt, replacing the words hermaphrodite and pseudo-hermaphrodite, taken from the story of Hermaphroditus in Greek mythology. In 2005, the medical establishment introduced DSD, or Disorders of Sexual Development, to replace intersex. Intersex adults and activists say that DSD is unnecessarily pathologizing, preferring to retain the word intersex or even in some cases hermaphrodite.

Current Medical Protocols

Normalising surgeries are performed in Ireland on the genitals of intersex children for what medical professionals have referred to as “social emergencies” rather than because of medical necessity. Current medical ideology stems from the theories of Dr John Money.

In the 1950s, New Zealand psychologist Dr John Money published his theory of human gender, providing the medical establishment with a solution to problems posed by intersex bodies. Money believed that gender was fluid in all human beings until the age of 2, advising that when presented with an intersex infant it was important for medical professionals to choose either a male or female gender and then cement that decision with surgery. Money’s theory paved the way for the normalisation of medical intervention for intersex children. Many intersex babies were assigned female at birth due to the ease of creating the appearance of female genitalia in comparison with male genitalia.

Under Money’s protocol, parents were advised to keep the child’s medical history secret from friends and relatives as well as from the intersex child themselves. To Dr John Money, consistency in parenting in the assigned gender was key to a successful outcome. If the outcome was bad, as with Money’s patient David Reimer who committed suicide in 2004, Money would blame inconsistency in parenting rather than it being a problem with his theory.

There is little if any follow up in Ireland with intersex people by medical professionals and intersex people and parents are often misled as to the rarity of intersex variations, leading intersex people to grow up in isolation. With intersex variations hidden even from intersex people themselves, intersex has been all but erased from the world while surgeries and hormonal interventions on intersex children continue. Because people are not presenting at their doctors or at the hospital as intersex, there has been no specialist care developed to meet the needs of intersex people throughout the course of their lives.

Many intersex people reported that the secrecy about their bodies growing up was damaging. While medical interventions are performed on intersex children with the intention of helping them blend into a binary society, for many it had an opposite effect, causing them to feel apart from and separated from society.

Many people find out they are intersex later in life during medical exams, DNA tests, or by finding their own cases in medical books. In the 1990s, with the availability of the internet, intersex people began to find each other and compare their experiences.

Many intersex people report experiencing sexual discomfort and difficulties associated with early medical interventions.

Increasingly, medical professionals are willing to admit that when infants with ambiguous genitalia are assigned one of two genders at birth, they don’t always get it right. While transgender and intersex are not the same thing, rates of gender dysphoria have been found to be higher in intersex than amongst non-intersex people and many intersex people were assigned female just because those surgeries were considered easier to perform. Intersex people assigned the wrong gender at birth may be subjected to the violence and discrimination experienced by transgender people. Intersex people experiencing gender dysphoria are left facing wait times that can span several years to be seen at the National Gender Service in the Republic of Ireland.

Intersex invisibility has resulted in a lack of cultural representation. Intersex people do not get to see intersex characters very often in books, film, or television, and neither do the public. This contributes to stigma against intersex people and a world where there are few legal protections for intersex people..

Intersex Variations

There are as many as 40 individual intersex variations. Here we will take a brief look at some of them, including common intersex variations such as CAH and hypospadias.

Babies with CAH, or Congenital Adrenal Hyperplasia, are often born with uterus and ovaries, but their genitalia may appear masculinized with a shallow vagina present. CAH is caused by the adrenal gland failing to make an enzyme needed for regulating androgen, aldosterone, and cortisol. People with CAH may suffer from severe salt-wasting which can be life threatening if not treated.

Hypospadias occurs when the urethral opening is on the underside of the phallus somewhere between the tip and the base of the shaft rather than at the tip. With an epispadias, the urethral opening is on the upper surface of the phallus.

With Androgen Insensitivity Syndrome, or AIS, babies with XY chromosomes are born with bodies that are unable to respond to androgens. Children with CAIS, or Complete Androgen Insensitivity Syndrome, may appear typically female at birth while those with PAIS, or Partial Androgen Insensitivity Syndrome, may appear somewhere on the spectrum between a typical male or female body.

People with Klinefelter syndrome are born with an additional chromosome resulting with XXY rather than a typical XY, resulting in reduced muscle mass, less facial hair, and reduced testosterone.

Due to a hormonal variation, babies with 5 ARD deficiency, or 5 alpha reductase-3 deficiency, are born with XY chromosomes but may appear typically female at birth, developing masculine secondary characteristics at puberty.

People with Swyer syndrome are born with XY chromosomes, however their testes do not develop normally and instead they may be born with female appearing genitalia and a uterus.

Mayer-Rokitansky-Küster-Hauser, or MRKH, results in children having an atypical vagina, uterus, and fallopian tubes, but can also affect bone and heart development.

With ovotestis, people are born with a combination of a testis on one side and an ovary or ovotestis on the other. Ovotestis are gonads that are composed of both ovarian and testicular tissue. Their genitalia may appear typical for male or female babies at birth or fall somewhere between the two.

Thomasina Hall

Born in Newcastle-on-Tyne, England, in 1603, assigned female at birth and raised as a girl, Thomasina Hall began living and dressing as a man in their teens and early 20s. Thomasina served in the military in both England and France, before returning to England and donning feminine attire, supporting themselves with needlework.  

In 1627, Hall moved to the Jamestown, Virginia as an indentured servant. By 1929, Hall had fallen afoul of the law for being observed to dress upon occasion as a female. Following an inspection, Hall was determined to be both male and female, sentenced to dress themselves forevermore as a man but with the addition of a woman’s bonnet and apron. It would be hard to imagine that this sentencing was for Hall’s benefit, but rather to discourage the possibility of homosexuality (Reis, 2009).

Herculine Barbin

Herculine Barbin was born on November 8^th in Saint-Jean-d’Angély, France, in 1838. Like Thomasina Hall, Barbin was assigned female at birth and raised in a convent. In 1857, Barbin secured a teaching position at an all-girls school where she fell in love with another teacher. Her affair was noticed and Barbin was subjected to a medical inspection where she was declared to be intersex.

Barbin was legally reclassified as male and forced to leave her old life as a woman and begin a new one as a man. 8 years later Barbin’s memoirs were discovered after she had committed suicide (Foucault, 1980; Dreger, 1998).

The intersex community celebrates Intersex Day of Remembrance every year on her birthday.

This Is Intersex

Intersex is the lived experience of the socio-cultural consequences of being born with a body that does not fit within the normative social construct of male and female. 1 in 90 people are intersex. Rather than the binary male and female, biological sex is a spectrum with infinite variations, including male and female. This means everyone has a unique set of hormones, chromosomes and sex characteristics.