Participants at the third International Intersex Forum, Malta, in December 2013
Intersex people are born with any of several variations in sex characteristics including chromosomes, gonads, sex hormones, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit the typical definitions for male or female bodies". Such variations may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female.
Intersex people were previously referred to as hermaphrodites, "congenital eunuchs", or congenitally "frigid".
Such terms have fallen out of favor; in particular, the term
"hermaphrodite" is considered to be misleading, stigmatizing, and
scientifically specious. Medical description of intersex traits as disorders of sex development has been controversial since the label was introduced in 2006.
Intersex people face stigmatization and discrimination from birth
or discovery of an intersex trait. This may include infanticide,
abandonment and the stigmatization of families.
Globally, some intersex infants and children, such as those with
ambiguous outer genitalia, are surgically or hormonally altered to
create more socially acceptable sex characteristics. However, this is
considered controversial, with no firm evidence of good outcomes. Such treatments may involve sterilization. Adults, including elite female athletes, have also been subjects of such treatment. Increasingly these issues are considered human rights abuses, with statements from international and national human rights and ethics institutions. Intersex organizations have also issued statements about human rights violations, including the Malta declaration of the third International Intersex Forum.
In 2011, Christiane Völling
became the first intersex person known to have successfully sued for
damages in a case brought for non-consensual surgical intervention. In April 2015, Malta
became the first country to outlaw non-consensual medical interventions
to modify sex anatomy, including that of intersex people.
Some intersex persons may be assigned and raised as a girl or boy but then identify with another gender later in life, while most continue to identify with their assigned sex.
Definitions
Model Hanne Gaby Odiele photographed by Ed Kavishe for Fashionwirepress. In 2017 Odiele disclosed that she has the intersex trait androgen insensitivity syndrome
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.
In biological terms, sex may be determined by a number of factors present at birth, including:
- 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 characteristics are not either all typically male or all typically female at birth are intersex.
Some intersex traits are not always visible 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.
History
_-_02.jpg)
Hermaphroditus in a wall painting from Herculaneum (first half of the 1st century AD)
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. The Greek historian Diodorus Siculus
wrote of "hermaphroditus" in the first century BCE that Hermaphroditus
"is born with a physical body which is a combination of that of a man
and that of a woman", and with supernatural properties.
_-_20131124.jpg)
Edward Coke, The First Part of the Institutes of the Lawes of England (1st ed, 1628, title page)
In European societies, Roman law, post-classical canon law, and later common law,
referred to a person's sex as male, female or hermaphrodite, with legal
rights as male or female depending on the characteristics that appeared
most dominant. The 12th-century Decretum Gratiani states that "Whether an hermaphrodite may witness a testament, depends on which sex prevails". The foundation of common law, the 17th Century Institutes of the Lawes of England described how a hermaphrodite could inherit "either as male or female, according to that kind of sexe which doth prevaile." Legal cases have been described in canon law and elsewhere over the centuries.
In some non-European societies, sex or gender systems with more
than two categories may have allowed for other forms of inclusion of
both intersex and transgender people. Such societies have been characterized as "primitive", while Morgan Holmes
states that subsequent analysis has been simplistic or romanticized,
failing to take account of the ways that subjects of all categories are
treated.
During the Victorian era, medical authors introduced the terms "true hermaphrodite"
for an individual who has both ovarian and testicular tissue, "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. Some later shifts in terminology have reflected advances in
genetics, while other shifts are suggested to be due to pejorative
associations.
The term intersexuality was coined by Richard Goldschmidt in 1917. The first suggestion to replace the term 'hermaphrodite' with 'intersex' was made by Cawadias in the 1940s.
Since the rise of modern medical science, some intersex people
with ambiguous external genitalia have had their genitalia surgically
modified to resemble either female or male genitals. Surgeons pinpointed
intersex babies as a "social emergency" when born. An 'optimal gender policy', initially developed by John Money, stated that early intervention helped avoid gender identity confusion, but this lacks evidence, and early interventions have adverse consequences for psychological and physical health.
Since 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.
Dialogue between what were once antagonistic groups of activists
and clinicians has led to only slight changes in medical policies and
how intersex patients and their families are treated in some locations. In 2011, Christiane Völling
became the first intersex person known to have successfully sued for
damages in a case brought for non-consensual surgical intervention. In April 2015, Malta
became the first country to outlaw non-consensual medical interventions
to modify sex anatomy, including that of intersex people.
Many civil society organizations and human rights institutions now call
for an end to unnecessary "normalizing" interventions, including in the
Malta declaration.
Human rights and legal issues
Intersex activists on a boat at Utrecht Canal Pride in the Netherlands on June 16, 2018
Human rights institutions are placing increasing scrutiny on harmful
practices and issues of discrimination against intersex people. These
issues have been addressed by a rapidly increasing number of
international institutions including, in 2015, the Council of Europe,
the United Nations Office of the United Nations High Commissioner for Human Rights and the World Health Organization. These developments have been accompanied by International Intersex Forums
and increased cooperation amongst civil society organizations. However,
the implementation, codification, and enforcement of intersex human
rights in national legal systems remains slow.
Areas of concern include non-consensual medical interventions;
stigma, discrimination and equal treatment; access to reparations and
justice; access to information and support, and legal recognition.
Physical integrity and bodily autonomy
Legal prohibition of non-consensual medical interventions
Regulatory suspension of non-consensual medical interventions
Stigmatization and discrimination from birth may include infanticide,
abandonment and the stigmatization of families. Mothers in east Africa
may be accused of witchcraft, and the birth of an intersex child may be
described as a curse. Abandonments and infanticides have been reported in Uganda, Kenya, south Asia, and China.
Infants, children and adolescents also experience "normalising" interventions on intersex persons that are medically unnecessary and the pathologisation
of variations in sex characteristics. Medical interventions to modify
the sex characteristics of intersex people, without the consent of the
intersex person have taken place in all countries where the human rights
of intersex people have been studied.
These interventions have frequently been performed with the consent of
the intersex person's parents, when the person is legally too young to
consent. Such interventions have been criticized by the World Health
Organization, other UN bodies such as the Office of the High
Commissioner for Human Rights, and an increasing number of regional and
national institutions due to their adverse consequences, including
trauma, impact on sexual function and sensation, and violation of rights
to physical and mental integrity. In April 2015, Malta became the first country to outlaw surgical intervention without consent. In the same year, the Council of Europe became the first institution to state that intersex people have the right not to undergo sex affirmation interventions.
Anti-discrimination and equal treatment
Explicit protection on grounds of sex characteristics
Explicit protection on grounds of intersex status
Explicit protection on grounds of intersex within attribute of sex
Inclusion in equal treatment and hate crime law.
Because people born with intersex bodies are seen as different,
intersex infants, children, adolescents and adults "are often
stigmatized and subjected to multiple human rights violations",
including discrimination in education, healthcare, employment, sport,
and public services. Several countries have so far explicitly protected intersex people from discrimination, with landmarks including South Africa, Australia, and, most comprehensively, Malta.
Reparations and justice
Facilitating access to justice and reparations. Access to reparation appears limited, with a scarcity of legal cases, such as the 2011 case of Christiane Völling in Germany. A second case was adjudicated in Chile in 2012, involving a child and his parents. A further successful case in Germany, taken by Michaela Raab, was reported in 2015. In the United States, the "M.C." legal case, advanced by Interact Advocates for Intersex Youth with the Southern Poverty Law Centre is still before the courts.
Information and support
Access to information,
medical records, peer and other counselling and support. With the rise
of modern medical science in Western societies, a secrecy-based model
was also adopted, in the belief that this was necessary to ensure
"normal" physical and psychosocial development.
Legal recognition
The Asia Pacific Forum of National Human Rights Institutions states that legal recognition
is firstly "about intersex people who have been issued a male or a
female birth certificate being able to enjoy the same legal rights as
other men and women."
In some regions, obtaining any form of birth certification may be an
issue. A Kenyan court case in 2014 established the right of an intersex
boy, "Baby A", to a birth certificate.
Like all individuals, some intersex individuals may be raised as a
certain sex (male or female) but then identify with another later in
life, while most do not. Recognition of third sex or gender classifications occurs in several countries, however, it is controversial when it becomes assumed or coercive, as is the case with some German infants.
Sociological research in Australia, a country with a third 'X' sex
classification, shows that 19% of people born with atypical sex
characteristics selected an "X" or "other" option, while 52% are women,
23% men, and 6% unsure.
Language
ILGA conference 2018, group photo to mark Intersex Awareness Day
U.S. intersex activist Pidgeon Pagonis
Research in the late 20th century led to a growing medical consensus
that diverse intersex bodies are normal, but relatively rare, forms of
human biology. Clinician and researcher Milton Diamond 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.
The term "intersex"
Some people with intersex traits self-identify as intersex, and some do not.
Australian sociological research published in 2016, found that 60% of
respondents used the term "intersex" to self-describe their sex
characteristics, including people identifying themselves as intersex,
describing themselves as having an intersex variation or, in smaller
numbers, having an intersex condition. A majority of 75% of survey
respondents also self-described as male or female.
Respondents also commonly used diagnostic labels and referred to their
sex chromosomes, with word choices depending on audience. Research by the Lurie Children's Hospital,
Chicago, and the AIS-DSD Support Group published in 2017 found that 80%
of affected Support Group respondents "strongly liked, liked or felt
neutral about intersex" as a term, while caregivers were less
supportive. The hospital reported that "disorders of sex development" may negatively affect care.
Some intersex organizations reference "intersex people" and "intersex variations or traits" while others use more medicalized language such as "people with intersex conditions",
or people "with intersex conditions or DSDs (differences of sex
development)" and "children born with variations of sex anatomy". In May 2016, Interact Advocates for Intersex Youth published a statement recognizing "increasing general understanding and acceptance of the term 'intersex'".
Hermaphrodite
A hermaphrodite
is an organism that has both male and female reproductive organs. Until
the mid-20th century, "hermaphrodite" was used synonymously with
"intersex". The distinctions "male pseudohermaphrodite", "female pseudohermaphrodite" and especially "true hermaphrodite" are terms no longer used, which reflected histology (microscopic appearance) of the gonads. Medical terminology has shifted not only due to concerns about language, but also a shift to understandings based on genetics.
Currently, hermaphroditism is not to be confused with intersex,
as the former refers only to a specific phenotypical presentation of sex
organs and the latter to a more complex combination of phenotypical and
genotypical presentation. Using hermaphrodite to refer to intersex individuals is considered to be stigmatizing and misleading. Hermaphrodite
is used for animal and vegetal species in which the possession of both
ovaries and testes is either serial or concurrent, and for living
organisms without such gonads but present binary form of reproduction,
which is part of the typical life history of those species; intersex has come to be used when this is not the case.
Disorders of sex development
"Disorders of sex development" (DSD) is a contested term,
defined to include congenital conditions in which development of
chromosomal, gonadal, or anatomical sex is atypical. Members of the
Lawson Wilkins Pediatric Endocrine
Society and the European Society for Paediatric Endocrinology adopted
this term in their "Consensus statement on management of intersex
disorders". While it adopted the term, to open "many more doors", the now defunct Intersex Society of North America itself remarked that intersex is not a disorder.
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.
Sociological research in Australia, published in 2016, found that
3% of respondents used the term "disorders of sex development" or "DSD"
to define their sex characteristics, while 21% use the term when
accessing medical services. In contrast, 60% used the term "intersex" in
some form to self-describe their sex characteristics. U.S. research by the Lurie Children's Hospital,
Chicago, and the AIS-DSD Support Group published in 2017 found that
"disorders of sex development" terminology may negatively affect care,
give offense, and result in lower attendance at medical clinics.
Alternatives to categorizing intersex conditions as "disorders" have been suggested, including "variations of sex development". 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.
The UK Intersex Association 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. In May 2016, Interact Advocates for Intersex Youth
also published a statement opposing pathologizing language to describe
people born with intersex traits, recognizing "increasing general
understanding and acceptance of the term "intersex"".
LGBT and LGBTI
Intersex can be contrasted with homosexuality or same-sex attraction. Numerous studies have shown higher rates of same sex attraction in intersex people,
with a recent Australian study of people born with atypical sex
characteristics finding that 52% of respondents were non-heterosexual, thus research on intersex subjects has been used to explore means of preventing homosexuality. However, current studies do not support a statistical correlation between genetic intersex traits and transsexual persons.
Intersex can therefore be contrasted with transgender, which describes the condition in which one's gender identity does not match one's assigned sex. Some people are both intersex and transgender. A 2012 clinical review paper found that between 8.5% and 20% of people with intersex variations experienced gender dysphoria. In an analysis of the use of preimplantation genetic diagnosis
to eliminate intersex traits, Behrmann and Ravitsky state: "Parental
choice against intersex may ... conceal biases against same-sex
attractedness and gender nonconformity."
The relationship of intersex to lesbian, gay, bisexual and trans, and queer communities is complex, but intersex people are often added to LGBT
to create an LGBTI community. Emi Koyama describes how inclusion of
intersex in LGBTI can fail to address intersex-specific human rights
issues, including creating false impressions "that intersex people's
rights are protected" by laws protecting LGBT people, and failing to
acknowledge that many intersex people are not LGBT. Organisation Intersex International Australia
states that some intersex individuals are same sex attracted, and some
are heterosexual, but "LGBTI activism has fought for the rights of
people who fall outside of expected binary sex and gender norms." Julius Kaggwa
of SIPD Uganda has written that, while the gay community "offers us a
place of relative safety, it is also oblivious to our specific needs". Mauro Cabral has written that transgender
people and organizations "need to stop approaching intersex issues as
if they were trans issues" including use of intersex as a means of
explaining being transgender; "we can collaborate a lot with the
intersex movement by making it clear how wrong that approach is".
In society
Kristi Bruce after shooting the documentary XXXY, 2000
Fiction and media
An intersex character is the narrator in Jeffrey Eugenides' Pulitzer Prize-winning novel Middlesex.
Television works about intersex and films about intersex are scarce. The Spanish-language film XXY won the Critics' Week grand prize at the 2007 Cannes Film Festival and the ACID/CCAS Support Award. Faking It is notable for providing both the first intersex main character in a television show, and television's first intersex character played by an intersex actor.
Civil society institutions
Intersex peer support and advocacy organizations have existed since at least 1985, with the establishment of the Androgen Insensitivity Syndrome Support Group Australia in 1985. The Androgen Insensitivity Syndrome Support Group (UK) established in 1988. The Intersex Society of North America
(ISNA) may have been one of the first intersex civil society
organizations to have been open to people regardless of diagnosis; it
was active from 1993 to 2008.
Events
Intersex Awareness Day
is an internationally observed civil awareness day designed to
highlight the challenges faced by intersex people, occurring annually on
26 October. It marks the first public demonstration by intersex people,
which took place in Boston on 26 October 1996, outside a venue where
the American Academy of Pediatrics was holding its annual conference.
Intersex Day of Remembrance,
also known as Intersex Solidarity Day, is an internationally observed
civil awareness day designed to highlight issues faced by intersex
people, occurring annually on 8 November. It marks the birthday of Herculine Barbin, a French intersex person whose memoirs were later published by Michel Foucault in Herculine Barbin: Being the Recently Discovered Memoirs of a Nineteenth-century French Hermaphrodite.
Flag
Intersex flag
The intersex flag was created by Intersex Human Rights Australia
(formerly OII Australia) in July 2013 to create a flag "that is not
derivative, but is yet firmly grounded in meaning". The organization
aimed to create a symbol without gendered pink and blue colors. It
describes yellow and purple as "hermaphrodite"
colors. The circle is described as "unbroken and unornamented,
symbolizing wholeness and completeness, and our potentialities. We are
still fighting for bodily autonomy and genital integrity, and this
symbolizes the right to be who and how we want to be."
Religion
In Hinduism, Sangam literature uses the word pedi to refer to people born with an intersex condition; it also refers to antharlinga hijras and various other hijras. Warne and Raza argue that an association between intersex and hijra people is mostly unfounded but provokes parental fear.
In Islam, scholars of Islamic jurisprudence have detailed
discussions on the status and rights of intersex based on what mainly
exhibits in their external sexual organs. Yet, modern Islamic
jurisprudence scholars turn to medical screening to determine the
dominance of their sex. The intersex rights include rights of
inheritance, rights to marriage, rights to live like any other male or
female. The rights are generally based on whether they are true
hermaphrodites or pseudohermaphrodite. Scholars of Islamic jurisprudence
generally consider their rights based on the majority of what appears
from their external sexual organs.
In Judaism, the Talmud contains extensive discussion concerning the status of two intersex types in Jewish law; namely the androgynous, which exhibits both male and female external sexual organs, and the tumtum
which exhibits neither. In the 1970s and 1980s, the treatment of
intersex babies started to be discussed in Orthodox Jewish medical halacha by prominent rabbinic leaders, for example Eliezer Waldenberg and Moshe Feinstein.
Sport
Stanisława Walasiewicz (Stella Walsh) in 1933
Multiple athletes have been humiliated, excluded from competition or
been forced to return medals following discovery of an intersex trait.
Examples include Erik Schinegger, Foekje Dillema, Maria José Martínez-Patiño and Santhi Soundarajan. In contrast, Stanisława Walasiewicz (also known as Stella Walsh) was the subject of posthumous controversy.
The South African middle-distance runner Caster Semenya
won gold at the World Championships in the women's 800 metres and won
silver in the 2012 Summer Olympics. When Semenya won gold in the World
Championships, the International Association of Athletics Federations (IAAF) requested sex verification tests. The results were not released, but Semenya was cleared to race with other women. Katrina Karkazis, Rebecca Jordan-Young, Georgiann Davis
and Silvia Camporesi argued that new IAAF policies on
"hyperandrogenism" in female athletes (applied for example to the case
of Dutee Chand),
established in response to the Semenya case, are "significantly
flawed", arguing 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.
In April 2014, the BMJ
reported that four elite women athletes with 5-ARD were subjected to
sterilization and "partial clitoridectomies" in order to compete in
sport. The authors noted that "partial clitoridectomy" was "not
medically indicated, does not relate to real or perceived athletic
"advantage". Intersex advocates regard this intervention as "a clearly coercive process". In 2016, the United Nations Special Rapporteur
on health, Dainius Pūras, criticized "current and historic" sex
verification policies, describing how "a number of athletes have
undergone gonadectomy (removal of reproductive organs) and partial
clitoridectomy (a form of female genital mutilation) in the absence of symptoms or health issues warranting those procedures."
Population figures
The
standard treatment in cases of Androgen Insensitivity Syndrome and
other intersex conditions was to lie to patients. This extract is from a
book published in 1963.
There are few firm estimates of the number of intersex people. The now-defunct Intersex Society of North America stated that:
If you ask experts at medical centers how often a child is born so noticeably atypical in terms of genitalia that a specialist in sex differentiation is called in, the number comes out to about 1 in 1500 to 1 in 2000 births [0.07–0.05%]. But a lot more people than that are born with subtler forms of sex anatomy variations, some of which won't show up until later in life.
Blackless, Fausto-Sterling et al., said in two articles in 2000 that
1.7 percent of human births (1 in 60) might be intersex, including
variations that may not become apparent until, for example, puberty, or
until attempting to conceive. Their publications have been widely quoted, though aspects are now considered outdated, such as use of the now scientifically incorrect term hermaphrodite.
Eric Vilain et al. highlighted in 2007 that the term disorders of sex development (DSD) had replaced "hermaphrodite" and improper medical terms based on it.
The figure of 1.7% is still maintained by Intersex Human Rights Australia "despite its flaws".
"This estimate relates to any "individual who deviates from the
Platonic ideal of physical dimorphism at the chromosomal, genital,
gonadal, or hormonal levels" and thus it encapsulates the entire
population of people who are stigmatized – or risk stigmatization – due
to innate sex characteristics."
Individuals with diagnoses of disorders of sex development
(DSD) may or may not experience stigma and discrimination due to their
sex characteristics, including sex "normalizing" interventions. Human
rights institutions have called for the demedicalization of intersex
traits, as far as possible.
The following summarizes some prevalence figures of intersex traits (a fuller 'List of conditions' is provided below, at the end of 'Medical classifications'):
| Intersex Trait (genotype) | Prevalence |
|---|---|
| Not XX, XY, Klinefelter, or Turner | one in 1,500–2,000 births (0.07–0.05%) |
| Klinefelter syndrome (47,XXY) | one in 1,000 births (0.10%) |
| Turner syndrome (45,X) | one in 2,710 births (0.04%) |
| Androgen insensitivity syndrome (46,XY) | one in 13,000 births (0.008%) |
| Partial androgen insensitivity syndrome (46,XY) | one in 130,000 births (0.0008%) |
| Classical congenital adrenal hyperplasia (46,XY or 46,XX) | one in 13,000 births (0.008%) |
| Late onset adrenal hyperplasia (46,XY or 46,XX) | one in 50–1,000 births (2–0.1%) |
| Vaginal atresia (46,XX) | one in 6,000 births (0.017%) |
| Ovotestes (45,X/46,XY mosaicism) | one in 83,000 births (0.0012%) |
| Idiopathic (no discernable medical cause; 46,XY or 46,XX) | one in 110,000 births (0.0009%) |
| Iatrogenic (caused by medical treatment, e.g., progestin administered to pregnant mother; 46,XY or 46,XX) | No estimate |
| 5-alpha-reductase deficiency (46,XY) | No estimate |
| Mixed gonadal dysgenesis (45,X/46,XY mosaicism) | No estimate |
| Müllerian agenesis (of vagina, i.e., MRKH Syndrome; 46,XX) | 1 in 4,500–5,000 births (0.022–0.020%) |
| Complete gonadal dysgenesis (46,XY or 46,XX or 45,X/46,XY mosaicism) | one in 150,000 births (0.00067%) |
Population figures can vary due to genetic causes. In the Dominican Republic, 5-alpha-reductase deficiency is not uncommon in the town of Las Salinas resulting in social acceptance of the intersex trait.
Men with the trait are called "güevedoces" (Spanish for "eggs at
twelve"). 12 out of 13 families had one or more male family members that
carried the gene. The overall incidence for the town was 1 in every 90
males were carriers, with other males either non-carriers or
non-affected carriers.
Medical classifications
Signs
Ambiguous genitalia
Ambiguous genitalia may appear as a large clitoris or as a small penis.
The Quigley scale is a method for describing genital development in AIS.
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) or 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.
Measurement systems
The orchidometer is a medical instrument to measure the volume of the testicles. It was developed by Swiss pediatric endocrinologist Andrea Prader. The Prader scale and Quigley scale are visual rating systems that measure genital appearance. These measurement systems were satirized in the Phall-O-Meter, created by the (now defunct) Intersex Society of North America.
Other 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.
Causes
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.
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. 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.
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
There are a variety of opinions on what conditions or traits are and
are not intersex, dependent on the definition of intersex that is used.
Current human rights based definitions stress a broad diversity of sex
characteristics that differ from expectations for male or female bodies. During 2015, the Council of Europe, the European Union Agency for Fundamental Rights and Inter-American Commission on Human Rights have called for a review of medical classifications on the basis that they presently impede enjoyment of the right to health;
the Council of Europe expressed concern that "the gap between the
expectations of human rights organizations of intersex people and the
development of medical classifications has possibly widened over the
past decade".
| List of conditions |
|---|
Medical interventions
Hong Kong intersex activist Small Luk
Rationales
Medical
interventions take place to address physical health concerns and
psychosocial risks. Both types of rationale are the subject of debate,
particularly as the consequences of surgical (and many hormonal)
interventions are lifelong and irreversible. Questions regarding
physical health include accurately assessing risk levels, necessity, and
timing. Psychosocial rationales are particularly susceptible to
questions of necessity as they reflect social and cultural concerns.
There remains no clinical consensus about an evidence base,
surgical timing, necessity, type of surgical intervention, and degree of
difference warranting intervention.
Such surgeries are the subject of significant contention due to
consequences that include trauma, impact on sexual function and
sensation, and violation of rights to physical and mental integrity. This includes community activism, and multiple reports by international human rights and health institutions and national ethics bodies.
In the cases where gonads may pose a cancer risk, as in some cases of androgen insensitivity syndrome,
concern has been expressed that treatment rationales and
decision-making regarding cancer risk may encapsulate decisions around a
desire for surgical normalization.
Types
- Feminizing and masculinizing surgeries: 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. 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 and develop normally. Psychosocial reasons are often stated. This is criticised by many human rights institutions, and authors. Unlike other aesthetic surgical procedures performed on infants, such as corrective surgery for a cleft lip, genital surgery may lead to negative consequences for sexual functioning in later life, or feelings of freakishness and unacceptability.
- Hormone treatment: There is widespread evidence of prenatal testing and hormone treatment to prevent or eliminate intersex traits, associated also with the problematization of sexual orientation and gender non-conformity.
- Psychosocial support: All stakeholders support psychosocial support. A joint international statement by participants at the Third International Intersex Forum in 2013 sought, amongst other demands: "Recognition that medicalization and stigmatisation of intersex people result in significant trauma and mental health concerns. In view of ensuring the bodily integrity and well-being of intersex people, autonomous non-pathologising psycho-social and peer support be available to intersex people throughout their life (as self-required), as well as to parents and/or care providers."
- Genetic selection and terminations: The ethics of preimplantation genetic diagnosis to select against intersex traits was the subject of 11 papers in the October 2013 issue of the American Journal of Bioethics.[169] There is widespread evidence of pregnancy terminations arising from prenatal testing, as well as prenatal hormone treatment to prevent intersex traits. Behrmann and Ravitsky find social concepts of sex, gender and sexual orientation to be "intertwined on many levels. Parental choice against intersex may thus conceal biases against same-sex attractedness and gender nonconformity."
- Gender dysphoria: The DSM-5 included a change from using gender identity disorder to gender dysphoria. This revised code now specifically includes intersex people who do not identify with their sex assigned at birth and experience clinically significant distress or impairment, using the language of disorders of sex development. This move was criticised by intersex advocacy groups in Australia and New Zealand.
- Medical photography and display: Photographs of intersex children's genitalia are circulated in medical communities for documentary purposes. Problems associated with medical photography of intersex children have been discussed due to experiences of humiliation and powerlessness by child subjects, along with their ethics, control and usage.
