Intersex

Intersex, in humans and other animals, is a variation in sex characteristics including chromosomes, gonads, or genitals that do not allow an individual to be distinctly identified as male or female. Such variation may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female.^[1][2] Intersex infants with ambiguous outer genitalia may be surgically 'corrected' to more easily fit into a socially accepted sex category. Others may opt, in adulthood, for surgical procedures in order to align their physical sex characteristics with their gender identity or the sex category to which they were assigned at birth. Others will not become aware that they are intersex—unless they receive genetic testing—because it does not manifest in their phenotype.

Some individuals may be raised as a certain sex (male or female) but then identify with another later in life, while others may not identify themselves as either exclusively female or exclusively male.^[1][2][3] Research has shown gender identity of intersex individuals to be independent of sexual orientation, though some intersex conditions also affect an individual's sexual orientation.^[4] Recent legal and regulatory developments in Australia have distinguished "intersex status" from both gender identity and sexual orientation.^[5][6][7][8]

The passports and identification documents of Australia and some other nationalities have adopted "X" as a valid third category besides "M" (male) and "F" (female), at least since 2003.^[9][10] In 2013, Germany became the first European nation to allow babies with characteristics of both sexes to be registered as indeterminate gender on birth certificates.

Research in the late 20th century has led to a growing medical consensus that diverse intersex bodies are normal—if relatively rare—forms of human biology. Milton Diamond, one of the most outspoken experts on matters affecting intersex people, stresses the importance of care in the selection of language related to such people.

Definition

In humans, biological sex is determined by five factors present at birth:^[11]

• the number and type of sex chromosomes;
• the type of gonads—ovaries or testicles;
• the sex hormones,
• the internal reproductive anatomy (such as the uterus in females), and
• the external genitalia.

People whose five characteristics are not either all typically male or all typically female are intersex. ^[12] Many conditions can lead to the underdevelopment of the sex characteristic collectively referred to as intersex conditions. These can involve differences of the genitals, either externally or internally. Some of these differences include:

• genitals that cannot be classified as male or female
• Incomplete development of internal reproductive organs
• Variations of the sex chromosomes
• different development of the testes or ovaries

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).

Definitions used by international institutions

The Council of Europe, in an explanatory memorandum to Resolution 1952 on Children's right to physical integrity, defines intersex as:^[13]

The term “intersex” refers to atypical and internal and/or external anatomical sexual characteristics, where features usually regarded as male or female may be mixed to some degree. This is a naturally occurring variation in humans and not a medical condition. It is to be distinguished from transsexuality, a phenomenon where someone has an evident sex, but feels as if he or she belongs to the other sex and is therefore ready to undergo a medical intervention altering his or her natural sex.^[13]

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):^[14]

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.^[14]

The Office of the UN High Commissioner for Human Rights defined intersex as follows, as part of the Free & Equal campaign, 2013:^[15]

An intersex person is born with sexual anatomy, reproductive organs, and/or chromosome patterns that do not fit the typical definition of male or female. This may be apparent at birth or become so later in life. An intersex person may identify as male or female or as neither. Intersex status is not about sexual orientation or gender identity: intersex people experience the same range of sexual orientations and gender identities as non-intersex people.^[15]

The World Health Organization's Genomic resource centre states:^[16]

Intersex is defined as a congenital anomaly of the reproductive and sexual system.^[16]

Definitions used by national governments

Australia

The Australian federal Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Act 2013 defines intersex as:^[5]

intersex status means the status of having physical, hormonal or genetic features that are:

(a) neither wholly female nor wholly male; or (b) a combination of female and male; or (c) neither female nor male.^[5]

Australian guidelines on the recognition of sex and gender (2013) explicitly recognise that intersex is innate, and that intersex people may identify their gender in three broad, legally recognised, ways:^[8]

An intersex person may have the biological attributes of both sexes or lack some of the biological attributes considered necessary to be defined as one or the other sex. Intersex is always congenital and can originate from genetic, chromosomal or hormonal variations. Environmental influences such as endocrine disruptors can also play a role in some intersex differences. People who are intersex may identify their gender as male, female or X.^[8]

Conditions and scope

There are a variety of opinions on what conditions are and are not intersex. For instance, the defunct Intersex Society of North America (ISNA) definition states that the following conditions "sometimes involve intersex anatomy" (note this does not mean they are always intersex conditions):^[17]

• 5-alpha reductase deficiency
• androgen insensitivity syndrome
• aphallia
• clitoromegaly
• congenital adrenal hyperplasia
• gonadal dysgenesis (partial & complete)
• hypospadias
• Klinefelter syndrome
• micropenis
• mosaicism involving sex chromosomes
• ovo-testes (formerly called "true hermaphroditism")
• partial androgen insensitivity syndrome
• progestin-induced virilisation
• Swyer syndrome
• Turner syndrome
• Non-Klinefelter XXY

See also:

• 17-beta-hydroxysteroid dehydrogenase deficiency
• cryptorchidism

Prevalence

The prevalence of intersex depends on which definition is used. According to the ISNA definition above, 1 percent of live births exhibit some degree of sexual ambiguity.^[18] Between 0.1% and 0.2% of live births are ambiguous enough to become the subject of specialist medical attention, including surgery to assign them to a given sex category (i.e., male or female). According to Fausto-Sterling's definition of intersex,^[19] on the other hand, 1.7 percent of human births are intersex.^[19]

According to Leonard Sax intersex should be "restricted to those conditions in which chromosomal sex is inconsistent with phenotypic sex, or in which the phenotype is not classifiable as either male or female", around 0.018%. This definition excludes Klinefelter Syndrome and many other variations.^[20]

The ISNA claims that there is no concrete definition of what counts as intersex, therefore statistics on the prevalence of biological sex variations may be controversial. The INSA cites Anne Fausto-Sterling's article^[21] that reviewed medical literature from 1955 to 1998, in which an attempt was made to gauge the frequency of intersex conditions.^[22]

The following is a summary of the frequency statistics:^{[citation needed]}

Sex Variation	Frequency
Not XX and not XY	one in 1,666 births
Klinefelter (XXY)	one in 1,000 births
Androgen insensitivity syndrome	one in 13,000 births
Partial androgen insensitivity syndrome	one in 130,000 births
Classical congenital adrenal hyperplasia	one in 13,000 births
Late onset adrenal hyperplasia	one in 66 individuals
Vaginal agenesis	one in 6,000 births
Ovotestes	one in 83,000 births
Idiopathic (no discernable medical cause)	one in 110,000 births
Iatrogenic (caused by medical treatment, for instance progestin administered to pregnant mother)	No estimate
5 alpha reductase deficiency	No estimate
Mixed gonadal dysgenesis	No estimate
Complete gonadal dysgenesis	one in 150,000 births
Hypospadias (urethral opening in perineum or along penile shaft)	one in 2,000 births
Hypospadias (urethral opening between corona and tip of glans penis)	one in 770 births

Signs

There are a range of variations between female and male types of genitalia; the Prader scale demonstrates this^[23] and is well illustrated here.^[24]

Ambiguous genitalia

Ambiguous genitalia appear as a large clitoris or as a small penis.

Because there is variation in all of the processes of the development of the sex organs, a child can be born with a sexual anatomy that is typically female or feminine in appearance with a larger-than-average clitoris (clitoral hypertrophy) typically male or masculine in appearance with a smaller-than-average penis that is open along the underside. The appearance may be quite ambiguous, describable as female genitals with a very large clitoris and partially fused labia, or as male genitals with a very small penis, completely open along the midline ("hypospadic"), and empty scrotum.

Fertility is variable. According to some,^[25][26] the distinctions "male pseudohermaphrodite", "female pseudohermaphrodite" and especially "true hermaphrodite"^[27] are vestiges of outdated 19th century thinking. According to others, the terms "male pseudohermaphrodite", and "female pseudohermaphrodite" are used to define the gender in terms of the histology (microscopic appearance) of the gonads.^[28]

"True hermaphroditism"

A "true hermaphrodite" is defined as someone with both testicular and ovarian tissue.

In 2003, researchers at UCLA published their studies of a lateral gynandromorphic hermaphroditic zebra finch, which had a testicle on the right and an ovary on the left. Its entire body was split down the middle between female and male, with hormones from both gonads running through the blood.^[29] This is an example of mosaicism or chimerism.

This extreme example of hermaphroditism is quite rare.

Ovotestes

Though naturally occurring true hermaphroditism in humans is unknown, there is, on the other hand, a spectrum of forms of ovotestes. The varieties include having two ovotestes or one ovary and one ovotestis, often in the form of streak gonads. Phenotype is not determinable from the ovotestes; in some cases, the appearance is "fairly typically female"; in others, it is "fairly typically male," and it may also be "fairly in-between in terms of genital development."^[30]

Intersex activist Cheryl Chase is an example of someone with ovotestes.^[31]

"Phall-o-Meter"

The Phall-o-meter, described by Anne Fausto-Sterling in Sexing the Body, is a metric scale. It enables assessment of acceptable phallus or clitoris measurements for boys and girls. For a girl, a medically acceptable clitoris can be no bigger than one centimeter. For a boy, an acceptable penis size must be between 2.5 centimeters and 4.5 centimeters. The range between one and 2.5 is unacceptable in either sex. Fausto-Sterling states:^[32]

If the clitoris is "too big" to belong to a girl, doctors will want to downsize it, but in contrast to the penis, doctors have rarely used precise clitoral measurements in deciding the gender of a newborn child. Such measurements, however, do exist. Since 1980, we have known that the average clitoral size of newborn girls is 0.34 centimeters. More recent studies show that clitoral length at birth ranges from 0.2 to 0.85 centimetres.

Other diagnostic signs

In order to help in classification, methods other than a genitalia inspection can be performed. For instance, a karyotype display of a tissue sample may determine which of the causes of intersex is prevalent in the case.

Sexual Ambiguity

Sexual ambiguity refers to somebody whose sex is not clearly displayed. It would not be clear to an outsider what the sex of that person would be. Because what counts as female or male is more on a continuum rather than black or white, it can be hard to define sexual ambiguity. Some people live and die with intersex anatomy without ever knowing that they are intersex. What is male, female, or even ambiguous is largely classified by society. The ambiguity can come from dress, physical attributes, or the way that one carries themselves. People can come off as sexually ambiguous by choice, but also from their genetics.^[33] Some people are born with ambiguous genitalia (meaning it does not fit the description for men's or women's genitalia), some people are born with different genotypes and phenotypes than just XX or XY, and many other disorders that fit into this category.^[34] There are many different intersex syndromes, such as Klinefelter syndrome,^[35] which is a chromosomal condition affecting males, androgen insensitivity syndrome, which is when a biological male is resistant to male hormones, and ovotestis, which is when there are both testicular and ovarian aspects to a human gonad.

John Money, a psychologist as well as a sexologist, studied sexual identity and gender, and coined the term gender identity. He has said that the overall sense of gender was "privately experienced" and "publicly manifest" regardless of biological sex and genital anatomy. Money is perhaps most widely known for his work on the (now controversial) John/Joan or David Reimer case, of a biological male who was raised as female due to a mishandled circumcision. The case was understood to describe a successful change in sex of rearing, until otherwise revealed by Milton Diamond. Robert Stoller is quoted as saying "sex is a biological state, consequent to prenatal biological forces, which almost always results in a newborn with unambiguous female or male genitals. Gender is a psychological state, a complex evolving intrapersonal and interpersonal experience",^[36] a quote that perfectly explains the difference between sex and gender.

Anne Fausto-Sterling advocates that, instead of culturally shaping ideas about gender and creating a dimorphism, scientists should allow for intersex to become a part of the norm and “[move] from an area of sexual dimorphism to one of the variety beyond the number two.”^[37]

Management

Options to manage intersex traits include surgery and psychosocial support.

Psychosocial support

A 2006 clinician "Consensus Statement on Intersex Disorders and Their Management" attempted to prioritise psychosocial support for children and families, but it also supports surgical intervention with psychosocial rationales.^[38]

In 2012, the Swiss National Advisory Commission on Biomedical Ethics argued strongly in favour of improved psychosocial support, saying:^[39]

The initial aim of counselling and support is therefore to create a protected space for parents and the newborn, so as to facilitate a close bond. In addition, the parents need to be enabled to take the necessary decisions on the child’s behalf calmly and after due reflection. In this process, they should not be subjected to time or social pressures. Parents’ rapid requests for medical advice or for corrective surgery are often a result of initial feelings of helplessness, which need to be overcome so as to permit carefully considered decision-making.

It is important to bear in mind and also to point out to the parents that a diagnosis does not in itself entail any treatment or other medical measures, but serves initially to provide an overview of the situation and a basis for subsequent decisions, which may also take the form of watchful waiting.

...interventions have lasting effects on the development of identity, fertility, sexual functioning and the parent-child relationship. The parents’ decisions should therefore be marked by authenticity, clarity and full awareness, and based on love for the child, so that they can subsequently be openly justified vis-à-vis the child or young adult.

Surgery

Surgical procedures depend on diagnosis, and there is often concern as to whether surgery should be performed at all. Typically, surgery is performed shortly after birth.

Surgery may be necessary to assist in bowel and bladder functions. However, defenders of the practice argue that it is necessary for individuals to be clearly identified as male or female in order for them to function socially. Psychosocial reasons are often stated, such as "minimizing family concern and distress" and “mitigating the risks of stigmatization and gender-identity confusion".^[38]

This is criticised by many such as Morgan Holmes and Alice Dreger, who say that surgical treatment is socially motivated and, hence, ethically questionable; without evidence, doctors regularly assume that intersex persons cannot have a clear gender identity. Parents may be advised that without surgery their child will be stigmatized.^[40]

Unlike other aesthetic surgical procedures performed on infants, such as corrective surgery for a cleft lip (as opposed to a cleft palate), genital surgery may lead to negative consequences for sexual functioning in later life (such as loss of sensation in the genitals, for example, when a clitoris deemed too large or penile is reduced/removed), or feelings of freakishness and unacceptability, which may have been avoided without the surgery. Further, since almost all such surgeries are undertaken to fashion female genitalia for the child, it is more difficult for the child to present as male if they later find they identify as or are genetically male. 20-50% of surgical cases result in a loss of sexual sensation (Newman 1991, 1992).

Additionally, parents were not often consulted on the decision-making process when choosing the sex of the child. Doctors took it upon themselves to decide what was best based on certain forms of evidence, such as hormonal levels, or other extreme forms. The idea of the environment and social norms shaping the sex of the child was completely ignored. The Intersex Society of North America stated that “For decades, doctors have thought it necessary to treat intersex with a concealment-centered approach, one that features downplaying intersex as much as possible, even to the point of lying to patients about their conditions. A lot of people in our culture also had no interest in hearing that sex doesn’t come in two simple flavors.”^[18] Opponents maintain that there is no compelling evidence that the presumed social benefits of such "normalizing" surgery outweigh the potential costs.^[41][42]

Intersex advocates and experts have critiqued the necessity of early interventions, citing individual's experiences of intervention and the lack of follow-up studies showing clear benefits. Specialists at the Intersex Clinic at University College London began to publish evidence in 2001 that indicated the harm that can arise as a result of inappropriate interventions, and advised minimising the use of childhood surgical procedures.^{[43][44][45][46][47][48][49][50][51][52]}

Studies have revealed how surgical intervention has had psychological effects, leading to the impact on well being and quality of life. Genitoplasty, plastic surgery done on the genitalia, does not ensure a successful psychological outcome for the patient and might require psychological support when the patient is trying to distinguish a gender identity.^[53] Other than the possible negative psychological outcomes, surgeries, like with a vaginoplasty, can have physical outcomes, one common one being scarring, which can be a factor to insensitivity.^[54] Other cases where vaginoplasty has caused complications, is that the implant or artificial vagina will not stay in place, or need further surgeries.^[55] One of the reasons there are many complications is doctors who do not specialize in genitoplasty or similar surgeries (phalloplasty, vaginoplasty) usually reconstruct the child's ambiguous genitalia.

The Swiss National Advisory Commission on Biomedical Ethics describes psychosocial interventions as problematic, with "harmful consequences may include, for example, loss of fertility and sexual sensitivity, chronic pain, or pain associated with dilation (bougienage) of a surgically created vagina, with traumatizing effects for the child. If such interventions are performed solely with a view to integration of the child into its family and social environment, then they run counter to the child’s welfare. In addition, there is no guarantee that the intended purpose (integration) will be achieved."^[39]

Experience of medical procedures and photography

Individuals report experiences of the trauma associated with intervention.^[56] The experiential similarities of medical interventions and child sexual abuse have been discussed.^[57][58][59]

Fausto-Sterling stated that doctors will either advise parents to socially raise their child as the male or female they were surgically made to be, without telling them what sex their chromosomes dictate they are, or that the parents often make this choice on their own. This often causes confusion later on in life when children experience puberty, or a relationship where they are confronted with the fact that their genitals do not function as they are told they should in a sexual education class or by friends.^[60] In the short documentary "XXXY", two intersex individuals talked openly about believing that intersex individuals should be raised as such and then allowed to choose whether or not they wanted surgery performed. A physician also featured agreed with these two individuals and encouraged an end to surgery on infants.^[60] Children who were born intersex and had surgery first as newborn infants and then continuously through their childhood and adolescence, report experiencing severe emotional confusion and/or devastation. The parents of these children are also impacted emotionally by the decisions they made to have their child undergo surgery from infant through adolescence.^[60][61]

Photographs of intersex children's genitalia are circulated in medical communities for documentary purposes; an example of this appears in the medical section 3.2.1 above. Problems associated with experiences of medical photography of intersex children have been discussed^[62] along with the ethics, control and usage.^[63]

"The experience of being photographed has exemplified for many people with intersex conditions the powerlessness and humiliation felt during medical investigations and interventions".^[63]

Gender dysphoria

The proposed revisions for DSM-5 include a change from using Gender Identity Disorder to Gender Dysphoria. This revised code now specifically includes intersex people as people with Disorders of Sex Development.^[64] This move has been criticised by intersex advocacy groups in Australia and New Zealand,^[65] and criticism from the intersex community has been lodged with the appropriate DSM5 subcommittee.

The UK Intersex Association (UKIA) is also highly critical of the label ‘disorders’ and points to the fact that there was minimal involvement of intersex representatives in the debate which led to the change in terminology. UKIA supports the suggestion put forward by Profs. Milton Diamond and Hazel Beh that the more neutral and less pathologising term "Variations of Sex Development" would be more appropriate in medical discussion.

Causes

Typical sex development

The common pathway of sexual differentiation, where a productive human female has an XX chromosome pair, and a productive male has an XY pair, is relevant to the development of intersex conditions.

During fertilization, the sperm adds either an X (female) or a Y (male) chromosome to the X in the ovum. This determines the genetic sex of the embryo.^[66] During the first weeks of development, genetic male and female fetuses are "anatomically indistinguishable," with primitive gonads beginning to develop during approximately the sixth week of gestation. The gonads, in a "bipotential state," may develop into either testes (the male gonads) or ovaries (the female gonads), depending on the consequent events.^[66] Through the seventh week, genetically female and genetically male fetuses appear identical.

At around eight weeks of gestation, the gonads of an XY embryo differentiate into functional testes, secreting testosterone. Ovarian differentiation, for XX embryos, does not occur until approximately Week 12 of gestation. In normal female differentiation, the Müllerian duct system develops into the uterus, Fallopian tubes, and inner third of the vagina. In males, the Müllerian duct-inhibiting hormone MIH causes this duct system to regress. Next, androgens cause the development of the Wolffian duct system, which develops into the vas deferens, seminal vesicles, and ejaculatory ducts.^[66] By birth, the typical fetus has been completely "sexed" male or female, meaning that the genetic sex (XY-male or XX-female) corresponds with the phenotypical sex; that is to say, genetic sex corresponds with internal and external gonads, and external appearance of the genitals.

Conditions

The final body appearance does not always correspond with what is dictated by the genes. In other words, there is sometimes an incongruity between genetic (or chromosomal) and phenotypic (or physical appearance) sex. Citing medical research regarding other factors that influence sexual differentiation, the Intersex Society of North America challenges the XY sex-determination system's assumption that chromosomal sex is the determining factor of a person's "true" biological sex.^[67]

X/Y	Name	Description
XX	Congenital adrenal hyperplasia (CAH)	The most common cause of sexual ambiguity is congenital adrenal hyperplasia (CAH), an endocrine disorder in which the adrenal glands produce abnormally high levels of virilizing hormones in utero. The genes that cause CAH can now be detected in the developing embryo. As Fausto-Sterling mentioned in chapter 3 of Sexing the Body, “a woman who suspects she may be pregnant with a CAH baby (if she or someone in her family carries CAH) can undergo treatment and then get tested.” To prevent an XX-CAH child's genitalia from becoming masculinized, a treatment, which includes the use of the steroid dexamethasone, must begin as early as four weeks after formation. Although many do not favor this process because "the safety of this experimental therapy has not been established in rigorously controlled trials", it does allow physicians to detect abnormalities, therefore starting treatment right after birth. Starting treatment as soon as an XX-CAH baby is born not only minimizes, but also may even eliminate the chances of genital surgery from being performed.[68] In XX-females, this can range from partial masculinization that produces a large clitoris, to virilization and male appearance. The latter applies in particular to Congenital adrenal hyperplasia due to 21-hydroxylase deficiency, which is the most common form of CAH. Individuals born with XX chromosomes affected by 17α-hydroxylase deficiency are born with female internal and external anatomy, but, at puberty, neither the adrenals nor the ovaries can produce sex-hormones, inhibiting breast development and the growth of pubic hair. See below for XY CAH 17α-hydroxylase deficiency.
XX	Progestin-induced virilisation	In this case, the excess androgen hormones are caused by use of progestin, a drug that was used in the 1950s and 1960s to prevent miscarriage. These individuals normally have internal and external female anatomy, with functional ovaries and will therefore have menstruation. They develop, however, some male secondary sex characteristics and they frequently have unusually large clitorises. In very advanced cases, such children have initially been identified as males.[69]
XX	Freemartinism	This condition occurs commonly in all species of cattle and affects most females born as a twin to a male. It is rare or unknown in other mammals, including humans. In cattle, the placentae of fraternal twins usually fuse at some time during the pregnancy, and the twins then share their blood supply. If the twins are of different sexes, male hormones produced in the body of the fetal bull find their way into the body of the fetal heifer (female), and masculinize her. Her sexual organs do not develop fully, and her ovaries may even contain testicular tissue. When adult, such a freemartin is very like a normal female in external appearance, but she is infertile, and behaves more like a castrated male (a steer). The male twin is not significantly affected, although (if he remains entire) his testes may be slightly reduced in size. The degree of masculinization of the freemartin depends on the stage of pregnancy at which the placental fusion occurs – in about ten percent of such births no fusion occurs and both calves develop normally as in other mammals.
XY	Androgen insensitivity syndrome (AIS)	People with AIS have a Y chromosome, (typically XY), but are unable to metabolize androgens in varying degrees. Cases with typically female appearance and genitalia are said to have complete androgen insensitivity syndrome (CAIS). People with CAIS have a vagina and no uterus, cervix, or ovaries, and are infertile. The vagina may be shorter than usual, and, in some cases, is nearly absent. Instead of female internal reproductive organs, a person with CAIS has undescended or partially descended testes, of which the person may not even be aware. In mild and partial androgen insensitivity syndrome (MAIS and PAIS), the body is partially receptive to androgens, so there is virilization to varying degrees. PAIS can result in genital ambiguity, due to limited metabolization of the androgens produced by the testes. Ambiguous genitalia may present as a large clitoris, known as clitoromegaly, or a small penis, which is called micropenis or microphallus; hypospadias and cryptorchidism may also be present, with one or both testes undescended, and hypospadias appearing just below the glans on an otherwise typical male penis, or at the base of the shaft, or at the perineum and including a bifid (or cleft) scrotum.
XY	5-alpha-reductase deficiency (5-ARD)	The condition affects individuals with a Y chromosome, making their bodies unable to convert testosterone to dihydrotestosterone (DHT). DHT is necessary for the development of male genitalia in utero, and plays no role in female development, so its absence tends to result in ambiguous genitalia at birth; the effects can range from infertility with male genitalia to male underdevelopment with hypospadias to female genitalia with mild clitoromegaly. The frequency is unknown, and children are sometimes misdiagnosed as having AIS.[70] Individuals can have testes, as well as vagina and labia, and a small penis capable of ejaculation that looks like a clitoris at birth. Such individuals are usually raised as girls. The lack of DHT also limits the development of facial hair.
XY	Congenital adrenal hyperplasia (CAH)	In individuals with a Y chromosome (typically XY) who have Congenital adrenal hyperplasia due to 17 alpha-hydroxylase deficiency, CAH inhibits virilization, unlike cases without a Y chromosome.
XY	Persistent Müllerian duct syndrome (PMDS)	The child has XY chromosomes typical of a male. The child has a male body and an internal uterus and fallopian tubes because his body did not produce Müllerian inhibiting factor during fetal development.
XY	Anorchia	Individuals with XY chromosomes whose gonads were lost after 14 weeks of fetal development. People with Anorchia have no ability to produce the hormones responsible for developing male secondary sex characteristics nor the means to produce gametes necessary for reproduction due to the lack of gonads. They may develop typically feminine secondary sex characteristics without or despite the administration of androgens to artificially initiate physical sex differentiation (typically planned around the age of puberty). Psychological and neurological gender identity may solidify before the administration of androgens, leading to gender dysphoria, as anorchic individuals are typically assigned male at birth.
XY	Gonadal Dysgenesis	It has various causes and are not all genetic; a catch-all category. It refers to individuals (mostly XY) whos gonads don't develop properly. Clinical features are heterogeneous.[71]
XY	Hypospadias	It is caused by various causes,including alterations in testosterone metabolism. The urethra does not run to the tip of the penis. In mild forms, the opening is just shy of the tip; in moderate forms, it is along the shaft; and in severe forms, it may open at the base of the penis.[71]
Other	Unusual chromosomal sex	In addition to the most common XX and XY chromosomal sexes, there are several other possible combinations, for example Turner syndrome (XO), Triple X syndrome (XXX), Klinefelter syndrome, (XXY) and variants (XXYY, XXXY, XXXXY), XYY syndrome, de la Chapelle syndrome (XX male), Swyer syndrome (XY female).
Other	Mosaicism and chimerism	A mix can occur, where some of the cells of the body have the common XX or XY, while some have one of the less usual chromosomal contents above. Such a mixture is caused by either mosaicism or chimerism. In mosaicism, the mixture is caused by a mutation in one of the cells of the embryo after fertilization, whereas chimerism is a fusion of two embryos. In alternative fashion, it is simply a mixture between XX and XY, and does not have to involve any less-common genotypes in individual cells. This, too, can occur both as chimerism and as a result of one sex chromosome having mutated into the other.[72] However, not all cases of mosaicism and chimerism involve intersex.

Complications

In the cases where nonfunctional testes are present, there is a risk that these develop cancer. Therefore, doctors either remove them by orchidectomy or monitor them carefully. This is the case for instance in androgen insensitivity syndrome.^[73]

In a major Parliamentary report in Australia, published in October 2013, the Senate Community Affairs References committee was "disturbed" by the possible implications of current practices in the treatment of cancer risk. The committee stated:

clinical intervention pathways stated to be based on probabilities of cancer risk may be encapsulating treatment decisions based on other factors, such as the desire to conduct normalising surgery… Treating cancer may be regarded as unambiguously therapeutic treatment, while normalising surgery may not. Thus basing a decision on cancer risk might avoid the need for court oversight in a way that a decision based on other factors might not. The committee is disturbed by the possible implications of this...^[74]

— Senate of Australia

Human rights

International Intersex Forum

Annual International Intersex Forums have taken place since 2011, bringing together intersex activists and organisations from around the world, including representatives from Advocates for Informed Choice, Global Action for Trans Equality, OII-USA, Organisation Intersex International Australia, Intersex Austria, Intersex UK, Nederlandse Netwerk Intersekse/DSD (NNID), IVIM/OII Deutschland, Oii-Chinese and others.

Each year, the forum has made statements about human rights and bodily autonomy of intersex people. The third statement called for an end to 'normalising' practices, prenatal screening and selective abortions, infanticide and killings, and non-consensual sterilisation. It also made statements on the sex and gender assignment of intersex children and adults.^{[75][76][77][78][79][80][81][82][83]}

Study on Human Rights Between the Sexes

In September 2013, the Heinrich Böll Foundation published an analysis of the human rights of intersex people in 12 countries, written by Dr. Dan Christian Ghattas of IVIM (OII-Germany).^{[84][85][86][87]} The countries studied were Australia, Belgium, France, Germany, New Zealand, Serbia, South Africa, Taiwan, Turkey, Uganda, Ukraine, and Uruguay. Ghattas found that intersex people are discriminated against worldwide:

Intersex individuals are considered individuals with a «disorder» in all areas in which Western medicine prevails. They are more or less obviously treated as sick or «abnormal», depending on the respective society.

• Genital "normalization" surgery is widespread: "Nearly all over the world, intersex bodies are considered to be barely, or not at all, capable of being integrated into the social order. Therefore, genital surgery is performed from infancy to adolescence and adulthood in all examined countries."
• Gonadal tissue is removed in most countries, between childhood and adolescence. Hormone treatments are administered. There is minimal aftercare.
• Birth registrations, with a sex assignment, is required in most countries, within 4 weeks of birth.
• Intersex is treated as a taboo subject in all countries studied. Intersex people experience prejudice, often due to gender non-conforming behaviour and appearance.
• Human rights-based activism is only recently established, and the number of NGOs small and volunteer-based.

Human Rights and Bodily Autonomy

Senate Committee inquiry, Australia

In October 2013, the Australian Senate published a report entitled Involuntary or coerced sterilisation of intersex people in Australia.^{[74][88][89][90][91]} The Senate found that "normalising" surgeries are taking place in Australia, often on infants and young children, with preconceptions that it described as "disturbing":

"Normalising appearance goes hand in hand with the stigmatisation of difference".^[74]

— Community Affairs committee, Senate of Australia

They commented:

"As OII commented, normalisation surgery is more than physical reconstruction. The surgery is intended to deconstruct an intersex physiology and, in turn, construct an identity that conforms with stereotypical male and female gender categories" ^[74]

— Community Affairs committee, Senate of Australia^[74]

and:

"Enormous effort has gone into assigning and ‘normalising’ sex: none has gone into asking whether this is necessary or beneficial. Given the extremely complex and risky medical treatments that are sometimes involved, this appears extremely unfortunate".^[74]

— Community Affairs committee, Senate of Australia^[74]

The report makes 15 recommendations, including ending cosmetic genital surgeries on infants and children and providing for legal oversight of individual cases.^[74]

Organisation Intersex International Australia welcomed the report, saying that,

At a first view, many of the headline conclusions and recommendations are positive – accepting our recommendations on minimising genital surgery, concern over the lack of adequate data, insufficient psychosocial support, and concern that decision making on cancer risk is insufficiently disentangled from wider concerns about a person’s intersex status itself; we also broadly welcome the recommendations relating to the prenatal use of Dexamethasone ... The distinction between therapeutic and non-therapeutic treatment has failed many intersex people in Australia. We welcome the recommendation for the proper oversight of individual cases.

— Organisation Intersex International Australia^[88]

Resolution by the Council of Europe

In October 2013, the Council of Europe adopted a resolution 1952, 'Children's right to physical integrity'. It calls on member states to^[92]

"undertake further research to increase knowledge about the specific situation of intersex people, ensure that no-one is subjected to unnecessary medical or surgical treatment that is cosmetic rather than vital for health during infancy or childhood, guarantee bodily integrity, autonomy and self-determination to persons concerned, and provide families with intersex children with adequate counselling and support"

— Resolution 1952/2013, Council of Europe^[92]

Report of UN Special Rapporteur on Torture

On 1 February 2013, Juan E Mendés, the UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, issued a statement condemning non-consensual surgical intervention on intersex people. His report states:^[93]

76. … There is an abundance of accounts and testimonies of persons being denied medical treatment, subjected to verbal abuse and public humiliation, psychiatric evaluation, a variety of forced procedures such as sterilization, State-sponsored forcible … hormone therapy and genital-normalizing surgeries under the guise of so called “reparative therapies”. These procedures are rarely medically necessary, can cause scarring, loss of sexual sensation, pain, incontinence and lifelong depression and have also been criticized as being unscientific, potentially harmful and contributing to stigma (A/HRC/14/20, para. 23).

77. Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, “in an attempt to fix their sex”, leaving them with permanent, irreversible infertility and causing severe mental suffering…

79. The mandate has noted that “members of sexual minorities are disproportionately subjected to torture and other forms of ill-treatment because they fail to conform to socially constructed gender expectations.

— UN Special Rapporteur on Torture^[93]

Report of Swiss National Advisory Council on Biomedical Ethics

In late 2012, the Swiss National Advisory Commission on Biomedical Ethics reported on intersex. The Commission report makes a strong case against medical intervention for “psychosocial” reasons:^[39]

Especially delicate are those cases where a psychosocial indication is used to justify the medical urgency of surgical sex assignment in children who lack capacity. Here, there is a particularly great risk of insufficient respect being accorded to the child’s (future) self-determination and its physical integrity...

Decisions on sex assignment interventions are to be guided by the questions of what genitalia a child actually requires at a given age (apart from a functional urinary system) and how these interventions will affect the physical and mental health of the child and the future adult. Treatment needs to be carefully justified, especially since – in functional, aesthetic and psychological respects – surgically altered genitalia ... are not comparable to natural male or female genitalia. Decisions are to be guided, above all, by the child’s welfare...

The harmful consequences may include, for example, loss of fertility and sexual sensitivity, chronic pain, or pain associated with dilation (bougienage) of a surgically created vagina, with traumatizing effects for the child. If such interventions are performed solely with a view to integration of the child into its family and social environment, then they run counter to the child’s welfare. In addition, there is no guarantee that the intended purpose (integration) will be achieved.

— Swiss National Advisory Commission on Biomedical Ethics^[39]

The report is notable for making a clear apology for damage done to intersex people in the past, and up until the present. It recommends deferring all "non-trivial" surgeries which have "irreversible consequences". The report also recommended criminal sanction for non-medically necessary genital surgeries.

Yogyakarta Principles

The 2006 Yogyakarta Principles on the Application of International Human Rights Law in relation to Sexual Orientation and Gender Identity is a set of principles relating to sexual orientation and gender identity, intended to apply international human rights law standards to address the abuse of the human rights of lesbian, gay, bisexual and transgender (LGBT) people. It briefly mentions intersex, influenced by the Declaration of Montreal which first demanded prohibition of unnecessary post-birth surgery to reinforce gender assignment until a child is old enough to understand and give informed consent. The Yogyakarta Principles detail this in the context of existing UN declarations and conventions under Principle 18, which called on states to:

B. Take all necessary legislative, administrative and other measures to ensure that no child’s body is irreversibly altered by medical procedures in an attempt to impose a gender identity without the full, free and informed consent of the child in accordance with the age and maturity of the child and guided by the principle that in all actions concerning children, the best interests of the child shall be a primary consideration;

C. Establish child protection mechanisms whereby no child is at risk of, or subjected to, medical abuse;

— The Yogyakarta Principles

San Francisco Human Rights Investigation

The 2005 Human Rights Investigation into the Medical “Normalization: of Intersex People, by the Human Rights Commission of the City and County of San Francisco is thought "likely to be the first human rights report into the treatment of intersex people, certainly in the English language."^[94][95][96] The report found that:

1. Infant genital surgeries and sex hormone treatments that are not performed for the treatment of physical illness, such as improving urinary tract or metabolic functioning, and have not been shown to alleviate pain or illness (hereafter referred to as “normalizing” interventions) are unnecessary and are not medical or social emergencies.
2. “Normalizing” interventions done without the patient’s informed consent are inherent human rights abuses.
3. “Normalizing” interventions deprive intersex people of the opportunity to express their own identity and to experience their own intact physiology.
4. It is unethical to disregard a child’s intrinsic human rights to privacy, dignity, autonomy, and physical integrity by altering genitals through irreversible surgeries for purely psychosocial and aesthetic rationales. It is wrong to deprive a person of the right to determine their sexual experience and identity. ...
5. It is ethically wrong to treat people differently or unfairly because they are perceived by others to be “monsters” or “oddities.”

— Human Rights Commission of the City and County of San Francisco^[95]

Constitutional Court of Colombia

Although not many cases of children with intersex conditions are available, a case taken to the Constitutional Court of Colombia led to changes in their treatment.^[97] The case significantly reduced the power of doctors and parents to decide surgical procedures on the children's ambiguous genitalia. Due to the decision of the Constitutional Court of Colombia on Case 1 Part 1 (SU-337 of 1999), doctors are obligated to inform parents on all the aspects of the intersex child. Parents can only consent to surgery if they have received accurate information, and cannot give consent after the child reaches the age of five. By then the child will have, supposedly, realized their gender identity.^[98] The court case has led to setting legal guidelines for doctors' surgical practice on intersex children.

Human Rights and Protection from Discrimination

Australia

"Intersex status" became a protected attribute in Australian federal law on 1 August 2013, recognising that intersex status is unrelated to gender identity, sexual orientation, sex or disability. The legislation, the Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Act 2013, passed Parliament without requiring a vote on 25 June 2013.^[5][7] The Act facilitates exemptions in competitive sport but does not support exemptions on religious grounds. The Explanatory Memorandum to the Act states,

During consultation, religious bodies raised doctrinal concerns about the grounds of sexual orientation and gender identity. However, no such concerns were raised in relation to ‘intersex status’. As a physical characteristic, intersex status is seen as conceptually different."

— Parliament of Australia^[6][99]

South Africa

In South Africa, the Judicial Matters Amendment Act, 2005 (Act 22 of 2005) amended the Promotion of Equality and Prevention of Unfair Discrimination Act, 2000 (Act 4 of 2000) to include intersex within its definition of sex:^[100]

(a) by the insertion in subsection (1) after the definition of “HIV/AIDS status” of the following definition: “ ‘intersex’ means a congenital sexual differentiation which is atypical, to whatever degree;”; and

(b) by the insertion in subsection (1) after the definition of “sector” of the following definition: “ ‘sex’ includes intersex;”.

— Government Gazette, South Africa^[100]

Identification documents

Australia, Germany, Nepal, and New Zealand are states that have taken steps to allow for intersex (and other) people to list their gender as other than male or female in their civil status registries and on identification documents.

Australia

Australian federal guidelines enable intersex (and other) people to identify gender as male, female or X on all federal documents, including passports. Documentary evidence must be witnessed by a doctor or psychologist, but medical intervention is not required.^[8] Alex MacFarlane received the first Australian passport with an 'X' sex descriptor, reported in January 2003.^{[9][101][102]}

Birth certificates are a State and Territory issue in Australia. Organisation Intersex International Australia asserts that identification changes are managed as an administrative correction, and that this process has enabled some adults to obtain birth certificates with an indeterminate or unspecified sex.^[103]

Alex MacFarlane is believed to be the first person in Australia to obtain a birth certificate recording sex as indeterminate. This is stated by The West Australian to be on the basis of an indeterminate birth certificate issued by the State of Victoria. The newspaper reported in January 2003 that the Department of Foreign Affairs and Trade "had decided to accommodate people whose birth certificates recorded their sex as indeterminate ... Alex is also believed to be the first Australian issued with a birth certificate acknowledging a gender other than male of female".^[101] Councillor Tony Briffa JP, of the City of Hobsons Bay, Victoria, previously acknowledged as the world's first openly intersex mayor,^[104][105] states on Tony's website that "my birth certificate is silent as to my sex".^[106][107]

Germany

Germany is the first European country that has allowed "indeterminate" sex as an option. A report by the German Ethics Council stated that the law was passed because, "Many people who were subjected to a 'normalizing' operation in their childhood have later felt it to have been a mutilation and would never have agreed to it as adults." ^[108] Deutsche Welle reported that an "indeterminate" 'option' was made available for the birth certificates of intersex infants with ambiguous genitalia on 1 November 2013.^[108] The move is controversial with many intersex advocates in Germany and elsewhere suggesting that it might encourage surgical interventions.^{[108][109][110]}

New Zealand

Birth certificates are available at birth showing "indeterminate" sex if it is not possible to assign a sex. The New Zealand Department of Internal Affairs states, "A person’s sex can be recorded as indeterminate at the time of birth if it cannot be ascertained that the person is either male or female, and there are a number of people so recorded."^[111]

Passports are available with an 'X' sex descriptor.^[112] These were originally introduced for people transitioning gender^[113]

Language

Research in the late 20th century has led to a growing medical consensus that diverse intersex bodies are normal, but relatively rare, forms of human biology.^{[2][114][115]}

Milton Diamond, one of the most outspoken experts on matters affecting intersex people, stresses the importance of care in the selection of language related to intersex people:

Foremost, we advocate use of the terms "typical," "usual," or "most frequent" where it is more common to use the term "normal." When possible avoid expressions like maldeveloped or undeveloped, errors of development, defective genitals, abnormal, or mistakes of nature. Emphasize that all of these conditions are biologically understandable while they are statistically uncommon.^[116]

Gender and sexual self-identification with the term 'intersex'

Some people with intersex traits self-identify as intersex, and some do not.^[117][118]

Hermaphrodite

A hermaphrodite is a plant or animal that has both male and female reproductive organs. Until the mid-20th century, "hermaphrodite" was used synonymously with "intersex".^[119]

Currently, however, hermaphroditism is not to be confused with intersex, as the former refers only to a specific phenotypical presentation of sex organs and latter to more complex combination of phenotypical and genotypical presentation, as well as social self-identification. Using "hermaphrodite" to refer to intersex individuals can be stigmatizing and misleading.^[120] In general, hermaphrodite is used for animal species in which the possession of both ovaries and testes (either serially or concurrently) is part of the typical life history of the species; intersex is used when this is not the case.

Transgender

The term transgender describes the condition in which one's gender identity does not match one's assigned sex. Some individuals may be both intersex and transgender but the two terms are not synonymous.^[121]

Transgender is an umbrella term for persons (unlike intersex) whose gender identity, expression and behavior does not match the typically associated sex that they were born with. Gender identity refers to the internal notion of being male or female. Gender expression refers to the nature in which a person communicates their gender.

Disorders of sex development

"Disorders of sex development" (DSD) is a term that has both supporters and opponents. It is defined to include congenital conditions in which development of chromosomal, gonadal, or anatomical sex is atypical.

A number of critics of traditional terminology, including the now defunct Intersex Society of North America, intersex activists, and some medical experts moved to eliminate the term "intersex" in medical usage, replacing it with disorders of sex development in order to avoid conflating anatomy with identity.^[122] Members of the Lawson Wilkins Pediatric Endocrine Society^[123] and the European Society for Paediatric Endocrinology^[124] accepted this term in their "Consensus statement on management of intersex disorders" published in the Archives of Disease in Children^[125] and in Pediatrics.^[38]

Other intersex people, activists, supporters, and academics have contested the adoption of the terminology and its implied status as a "disorder", seeing this as offensive to intersex individuals who do not feel that there is something wrong with them, regard the DSD consensus paper as reinforcing the normativity of early surgical interventions, and criticizing the treatment protocols associated with the new taxonomy.^{[126][127][128]} Alternatives to categorizing intersex conditions as "disorders" have been suggested, including "variations of sex development".^[129] Organisation Intersex International (OII) questions a disease/disability approach, argues for deferral of intervention unless medically necessary, when fully informed consent of the individual involved is possible, and self-determination of sex/gender orientation and identity.^[130]

Intersex in Society

History

Intersex people are treated in different ways by different cultures. In some cultures, such people were included in larger "third gender" or gender-blending social roles along with other individuals. In most societies, intersex people have been expected to conform to either a female or a male gender role.^[131] Surgeons pinpointed intersex babies as an emergency once they were born. The parents of the intersex babies were not content about the situation. Psychologists, sexologists, and researchers had a theory that it was better if the baby's genitalia were changed when they were younger than when they were a mature adult. At the time, these scientists believed that early intervention helped avoid gender identity confusion.^[132]

Whether or not they were socially tolerated or accepted by any particular culture, the existence of intersex people was known to many ancient and pre-modern cultures. An example is one of the Sumerian creation myths from more than 4,000 years ago. The story has Ninmah, a mother goddess, fashioning mankind out of clay.^[133] She boasts that she will determine the fate – good or bad – for all she fashions. Enki, the father god, retorts as follows.

Enki answered Ninmah: "I will counterbalance whatever fate – good or bad – you happen to decide." Ninmah took clay from the top of the abzu [ab = water, zu = far] in her hand and she fashioned from it first a man who could not bend his outstretched weak hands. Enki looked at the man who cannot bend his outstretched weak hands, and decreed his fate: he appointed him as a servant of the king.

... [Three men and one woman with atypical biology are formed and Enki gives each of them various forms of status to ensure respect for their uniqueness] ...

Sixth, she fashioned one with neither penis nor vagina on its body. Enki looked at the one with neither penis nor vagina on its body and gave it the name Nibru [eunuch(?)], and decreed as its fate to stand before the king.

During the Victorian era, medical authors introduced the terms "true hermaphrodite" for an individual who has both ovarian and testicular tissue, verified under a microscope, "male pseudo-hermaphrodite" for a person with testicular tissue, but either female or ambiguous sexual anatomy, and "female pseudo-hermaphrodite" for a person with ovarian tissue, but either male or ambiguous sexual anatomy. In Europe, the term 'intersexual' was first to be used before the Second World War.^[134][135] The first suggestion to replace the term 'hermaphrodite' with 'intersex' came from British specialist Cawadias in the 1940s.^[119] This suggestion was taken up by specialists in the UK during the 1960s, by both those who rejected Money's framework (then emerging from the USA),^[136] and those who endorsed that approach.^[137]

Since the rise of modern medical science in Western societies, some intersex people with ambiguous external genitalia have had their genitalia surgically modified to resemble either female or male genitals. Since the advances in surgery have made it possible for intersex conditions to be concealed, many people are not aware of how frequently intersex conditions arise in human beings or that they occur at all.^[138] Contemporary social activists, scientists and health practitioners, among others, have begun to revisit the issue. Awareness of the existence of physical sexual variation in human beings has increased.

Some groups, such as ISNA, and some clinicians, such as those at University College Hospital London, have questioned the practice of performing genital corrective surgery on intersex children. Dialogue between what were once antagonistic groups of activists and clinicians has led to changes in medical policies and how intersex patients and their families are treated in some locations.^[139][140] There are intersex groups, such as OII, who argue that the various degrees of intersex are natural human variations that should not be subject to correction.

Anne Fausto-Sterling coined the words herm (for "true hermaphrodite"), merm (for "male pseudo-hermaphrodite"), and ferm (for "female pseudo-hermaphrodite"),^[141] and proposed that these be recognized as sexes along with female and male. Her terms were "tongue-in-cheek"; she no longer advocates these terms even as a rhetorical device. The activist Cheryl Chase criticized these terms in a letter to The Sciences, also criticizing the traditional standard of medical care. Chase announced the creation of the Intersex Society of North America.^{[citation needed]}

Sociological approaches

The first sociologist to work on 'intersexuality' was Harold Garfinkel in 1967 using a method derived from sociological phenomenology he called ethnomethodology. He based his analysis on the everyday commonsense understandings of 'Agnes', a woman undergoing social and surgical gender reassignment.^[142] Ethnomethodology was also used in 1978 by Kessler and McKenna, who argue that, while gender can be seen as a social accomplishment, cross-cultural studies render gender as problematic as they highlight how it is usually regarded as a fact, when it can be shown to be constructed in different ways. They point to different cultural approaches to gender roles, and how 'hermaphrodites' and 'berdaches' are incorporated socially, as disruptive to fixed ideas about sex, gender, and gender-roles. They argue that what we 'know' about gender is grounded in the 'everyday social construction of a world of two genders', where gender attribution seems more important than gender differentiation.^[143]

Intersex in popular culture

Books

Jeffrey Eugenides' novel Middlesex (2002) is narrated by an intersex character who discusses the societal experience of an intersex person.^[144]

Mary Gentle used an intersexed narrator in Ilario: The Lion's Eye and its sequel Ilario: The Stone Golem, published in 2007.

Intersex author Thea Hillman's memoir Intersex (For Lack of a Better Word) was published in 2008.^[145][146]

Abigail Tarttelin's 2013 novel Golden Boy is about an intersex teenager.^[147]

Kathleen Winter's 2010 novel Annabel is a fictional account of an intersex person growing up in Labrador, Newfoundland and Labrador, Canada.

Comics

The Japanese manga series I.S., first published in 2003, features intersex characters and how they deal with intersex-related issues and influence the lives of people around them.

In 2012 the character Shining Knight was revealed as DC Comics’s first intersex character in Demon Knights #14.^[148]

Film

The 1995 film Hermaphrodites Speak! is a 30 minute documentary film from the United States in which several intersex people at the first retreat of the Intersex Society of North America discuss their lives and the medical treatment and parenting they received.

In 2000, Porter Gale, Masters in Documentary Film and Video from Stanford University,and Laleh Soomekh, produced XXXY, a documentary revealing intersex individuals' opinions on the surgical procedures done on them, while providing a medical professional's opinion as well. The film clearly shows the dissatisfaction and the painful repercussions for the children who went through sex reassignment surgeries.^[55]

In 2006, Ajae Clearway produced an award winning documentary giving voice to various intersex individuals and their experiences with surgeries, and advocates for informed consent. The film One in Two Thousand educates the viewer on notions of sexuality, and the opposition on unnecessary surgeries.^[149]

The 2007 Argentine film XXY centres around a young intersex person who is assisted in presenting as a girl with medication. The film deals with discrimination, sexuality and gender identity.

In 2010, Australian documentary-maker Phoebe Hart directed an autobiographical documentary of her personal experience as an intersex person. The film, Orchids, My Intersex Adventure, explores the various social scenarios faced by many intersex individuals.

In 2012, the film Intersexion was awarded the Best Feature Documentary award at the Documentary Edge Festival, presented by Mani Bruce Mitchell of Intersex Trust Aotearoa New Zealand (ITANZ). The film was directed by Grant Lahood. The film follows Mani as s/he visits intersex people in America, Ireland, Germany, South Africa and Australia.

Magazines

In 2013 the op-ed "Intersex, the Final Coming-Out Frontier," by intersex author Hida Viloria, was published in The Advocate.^[150]

TV and Radio

Intersex was discussed on British TV for the first time in 1966, and became a topic of interest for broadcast TV and radio in the United States and other countries from 1989.^{[citation needed]}

In the 2000 Freaks and Geeks episode "The Little Things", Ken has to deal with the discovery that his girlfriend had been born with ambiguous genitalia.

In the 2009 episode of House entitled, "The Softer Side", a teenager with Genetic Mosaicism that is unaware of his (the gender his parents choose for him) condition develops dehydration and is admitted to Princeton Plainsboro Teaching Hospital.

In the 2010 Childrens Hospital episode "Show Me on Montana", Drs. Flame and Maestro try to convince a hermaphrodite child which gender to choose, with each doctor vying for their own gender.

The 2012 Emily Owens, M.D. episode "Emily and... the Question of Faith" featured an intersex baby.^[151]

Sport

Multiple intersex athletes have been humiliated, excluded from competition or had to return medals following discovery of their intersex status, such as Erik Schinegger, Pinki Pramanik and Foekje Dillema. Santhi Soundarajan, an Indian athlete who competes in the middle distance track events, was stripped of a silver medal won at the 2006 Asian Games after failing a sex verification test, disputing her eligibility to participate in the women's competition. In contrast, Stanisława Walasiewicz (also known as Stella Walsh) was the subject of posthumous controversy.

Caster Semenya is a South African middle-distance runner. she won gold at the World Championships in the women's 800 meter and also competed in the 2012 Summer Olympics where she won the silver medal. It is not firmly established if she is intersex or not, but her appearance means that she was subjected to sex testing. When Semenya won gold in the World Championships, the International Association of Athletics Federations (IAAF) requested gender verification tests due to her deep voice, muscular build, and her rapid improvement in her running times. The results were not released, but Semenya was cleared to race with other women.^[152]

Writing in the American Journal of Bioethics, Katrina Karkazis, Rebecca Jordan-Young, Georgiann Davis and Silvia Camporesi have argued that new IAAF policies on "hyperandrogenism" in female athletes, established in response to the Caster Semenya case, are "significantly flawed". They argue that the policy will not protect against breaches of privacy, will require athletes to undergo unnecessary treatment in order to compete, and will intensify "gender policing". They recommend that athletes be able to compete in accordance with their legal gender.^[153] Hida Viloria and Spanish hurdler Maria José Martínez-Patiño,^[154] have argued, in the same Journal, that Olympic sex testing is applied in a way that targets only 'butch' women, those who are "masculine looking".^[155][156] Upon the release of the I.O.C.'s final regulations for intersex women with hyperandrogenism in 2012, she told The New York Times Sports Editor that the issues for intersex athletes remain unresolved: "Many athletes have medical differences that give them a competitive edge but are not asked to have medical interventions to “remove” the advantage.... The real issue is not fairness, but that certain athletes are not accepted as real women because of their appearance." ^[157]

Education

In secondary schools, biology and sex education instructors often place most emphasis on the most common XX and XY genotypes. Thus, people nowadays may be more likely to look towards the sex chromosomes than, for example, the histology of the gonads. However, according to researcher Eric Vilain at the University of California, Los Angeles, "the biology of gender is far more complicated than XX or XY chromosomes".^[158] Many different criteria have been proposed, and there is little consensus.^[159]

In 2002 at the Reform seminary Hebrew Union College-Jewish Institute of Religion in New York, the Reform rabbi Margaret Wenig organized the first school-wide seminar at any rabbinical school which addressed the psychological, legal, and religious issues affecting people who are intersex or transsexual.^[160] In 2003 Margaret Wenig organized the first school-wide seminar at the Reconstructionist Rabbinical College which addressed the psychological, legal, and religious issues affecting people who are intersex or transsexual.^[160]

Exclusion from binary model of sex and gender

The standard model of the difference between sex and gender says that one’s sex is biologically determined while one’s gender is socially or culturally determined. Sex being biologically determined means that when a child is born, doctors classify the infant as either male or female depending on the anatomy. Gender being socially or culturally determined means that the way in which that child is raised, socialized, and taught determines whether he or she takes on masculine or feminine traits. People born intersex may experience teasing, stares, and / or awkwardness in situations such as using a public restroom due to a perceived failure to conform to social norms around sex or gender.^[161]

The standard model says that humans are sexually dimorphic. This means each and every human being is either male or female, thus leaving out those who are born intersex, for example. The standard model explains that gender is categorized into two separate opposing sides being either masculine or feminine, again completely excluding those who are intersex, transgender, androgynous and so on. Scholars such as Anne Fausto-Sterling and Bonnie Spanier criticize and reject the standard binary of sex and gender for a variety of reasons such as objectivity in science, heteronormativity, inclusion of intersex individuals, and the trust our society gives doctors and scientists.^[71]

Bonnie Spanier states that American society is based on heterosexism; anyone that falls outside the norm is seen as abnormal or needing to be fixed. Homosexual individuals do not fit the sex and gender dimorphism. Spanier states, “The conflation, based on heterosexism, reflects and reinforces what is normal and what is abnormal in sexual relations. Obviously, in this framework, gay men and deficient in maleness and thus are more female than “normal” males; conversely, lesbians are male” (368). This says that homosexual individuals are neither fully male nor fully female when it comes to gender so they too would be excluded from the standard model. Spanier also discusses Dr. Ruth Bleier’s criticism of flawed medical studies involving the size of the corpus callosum in females compared to males. Bleier conducted three more studies by other researchers and failed to find sex-related differences in the size of the corpus callosum.^[162] Spanier writes “she [Bleier] argues very strongly for the predominant role of environmental influences” (369). This relates back to doctors feeling the need to treat intersex children as a medical emergency without consulting anyone, including the parents. Evidence shows that nurture has much to do with sex and gender roles so using the standard model in modern medicine is invalid because many individuals cannot be classified as completely male or completely female.^[163]

Intersex people and researchers

Intersex organizations

See also

• 17-beta-hydroxysteroid dehydrogenase deficiency
• Androgyny
• Disorders of sex development
• Gender roles
• Gender identity
• Gynandromorph
• Hypogonadism
• Intersex Awareness Day
• International Intersex Forum
• Pseudohermaphroditism
• Sexual differentiation
• Sex differences in humans
• Third sex
• Transsexualism

References

^[164]

• Fausto-Sterling, Anne (2000). Sexing the body: gender politics and the construction of sexuality. New York, NY: Basic Books. pp. 44–11. 
• Lederman, Muriel (2001). From Molecules to Brains, Normal Science Supports Sexist Beliefs About Differences. London: Routledge. pp. 367–372. 

Bibliography

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• Cooky, C., & Dworkin, S. L. (2013). Policing the Boundaries of Sex: A Critical Examination of Gender Verification and the Caster Semenya Controversy. Journal Of Sex Research, 50(2), 103-111

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• Dreger, Alice. "Ambiguous sex"--or Ambivalent Medicine? The Hastings Center Report May/Jun 1998, Volume 28, Issue 3 Pages 24–35. http://www.isna.org/articles/ambivalent_medicine

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• San Francisco Human Rights Commission A Human Rights Investigation into the medical "normalization" of intersex people (PDF format via Senate of Australia)

• Sax, Leonard. How common is intersex? A response to Anne Fausto-Sterling. J Sex Research 39:174-9, 2002

• Schultheiss, Dirk; Herrmann, Thomas; Jonas, Udo (March 2006). "Early Photo-Illustration of a Hermaphrodite by the French Photographer and Artist Nadar in 1860". The Journal of Sexual Medicine 3 (2): 355–360. doi:10.1111/j.1743-6109.2005.00157.x. PMID 16490032. 

• "Klinefelter syndrome" U.S. National Library of Medicine Jan 2013. http://ghr.nlm.nih.gov/condition/klinefelter-syndrome

External links

Wikimedia Commons has media related to Intersexuality.

• Accord Alliance
• Advocates for Informed Choice (AIC)
• Organisation Intersex International (OII)
• UK Intersex Association (UKIA)
• Intersex South Africa (ISSA)
• Androgen Insensitivity Syndrome Support Group (AISSG)
• Bodies Like Ours
• Consortium on the Management of Disorders of Sex Development
• Intersex Society of North America
• Intersex Initiative
• Male and Female Sign (Symbol for Intersex in character encoding standard Unicode)
• Channel4 (UK), 4Health: Intersexuality – Breaking the Taboo
• GeneReviews/NCBI/NIH/UW entry on 46,XX Testicular Disorder of Sex Development
• GeneReviews/NCBI/NIH/UW entry on 46,XY Disorder of Sex Development and 46,XY Complete Gonadal Dysgenesis
• Intersexion Documentary
• Councillor Tony Briffa JP (first intersex Mayor and publicly elected official)

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