Intersex


Intersex people are those born with any of several sex characteristics, including chromosome patterns, gonads, or genitals that, according to the Office of the United Nations High Commissioner for Human Rights, "do not fit typical binary notions of male or female bodies". The opposite of intersex is endosex, which describes persons born with sex characteristics that are seen as typically male or female at birth.
Sex assignment at birth usually aligns with a child's external genitalia. The number of births with ambiguous genitals is in the range of 1:4,500–1:2,000. Other conditions involve the development of atypical chromosomes, gonads, or hormones. The portion of the population that is intersex has been reported differently depending on which definition of intersex is used and which conditions are included. Estimates often range from 0.018% to 1.7%. The difference centers on whether conditions in which chromosomal sex matches a phenotypic sex which is clearly identifiable as male or female, such as late onset congenital adrenal hyperplasia and Klinefelter syndrome, should be counted as intersex. Whether intersex or not, people 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.
Terms used to describe intersex people are contested, and change over time and place. Intersex people were previously referred to as "hermaphrodites" or "congenital eunuchs". In the 19th and 20th centuries, some medical experts devised new nomenclature in an attempt to classify the characteristics that they had observed, the first attempt to create a taxonomic classification system of intersex conditions. Intersex people were categorized as either having "true hermaphroditism", "female pseudohermaphroditism", or "male pseudohermaphroditism". These terms are no longer used, and terms including the word "hermaphrodite" are considered to be misleading, stigmatizing, and scientifically specious in reference to humans. In biology, the term "hermaphrodite" is used to describe an organism that can produce both male and female gametes. Some people with intersex traits use the term "intersex", and some prefer other language. In clinical settings, the term "disorders of sex development" has been used since 2006, a shift in language considered controversial since its introduction.
Intersex people face stigmatization and discrimination from birth, or following the discovery of intersex traits at stages of development such as puberty. Intersex people may face infanticide, abandonment, and stigmatization from their 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. This is considered controversial, with no firm evidence of favorable 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 2013 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.

Terminology

There is no clear consensus definition of intersex and no clear delineation of which specific conditions qualify an individual as intersex. The World Health Organization's International Classification of Diseases, the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, and many medical journals classify intersex traits or conditions among disorders of sex development.

Etymology and definitions

In 1917, Richard Goldschmidt created the term "intersexuality" to refer to a variety of physical sex ambiguities. However, according to The SAGE Encyclopedia of LGBTQ Studies, it was not until Anne Fausto Sterling published her article "The Five Sexes: Why Male and Female Are Not Enough" in 1993 that the term reached popularity.
According to the UN Office of the High Commissioner for Human Rights:

Attitudes towards the term

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 " and "children born with variations of sex anatomy". In May 2016, interACT published a statement recognizing "increasing general understanding and acceptance of the term 'intersex'".
Australian sociological research on 272 "people born with atypical sex characteristics", 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. Respondents also commonly used diagnostic labels and referred to their sex chromosomes, with word choices depending on audience.
Research on 202 respondents by the Lurie Children's Hospital, Chicago, and the AIS-DSD Support Group published in 2017 found that 80% of Support Group respondents "strongly liked, liked or felt neutral about intersex" as a term, while caregivers were less supportive. The hospital reported that the use of the term "disorders of sex development" may negatively affect care.
Another study by a group of children's hospitals in the United States found that 53% of 133 parent and adolescent participants recruited at five clinics did not like the term "intersex". Participants who were members of support groups were more likely to dislike the term. A "dsd-LIFE" study in 2020 found that around 43% of 179 participants thought the term "intersex" was bad, 20% felt neutral about the term, while 37% thought the term was good.

The term "hermaphrodite"

Historically, the term "hermaphrodite" was used in law to refer to people whose sex was in doubt. The 12th century Decretum Gratiani states that "Whether an hermaphrodite may witness a testament, depends on which sex prevails". Similarly, the 17th century English jurist and judge Edward Coke, wrote in his Institutes of the Lawes of England on laws of succession stating, "Every heire is either a male, a female, or an hermaphrodite, that is both male and female. And an hermaphrodite shall be heire, either as male or female, according to that type of sexe which doth prevaile."
During the Victorian era, medical authors attempted to ascertain whether or not humans could be hermaphrodites, adopting a precise biological definition for the term, and making distinctions between "male pseudohermaphrodite", "female pseudohermaphrodite" and especially "true hermaphrodite". These terms, which reflected histology of the gonads, are rarely used in the 2020s. Until the mid-20th century, "hermaphrodite" was used synonymously with "intersex". Medical terminology shifted in the early 21st century, not only due to concerns about language, but also a shift to understandings based on genetics. The term "hermaphrodite" is also controversial as it implies the existence of someone fully male and fully female. As such the term "hermaphrodite" is often seen as degrading, although many intersex activists use it as a direct form of self empowerment and critique such as in the Intersex Society of North America's first newsletter Hermaphrodites with Attitude.
The Intersex Society of North America has stated that hermaphrodites should not be confused with intersex people and that using "hermaphrodite" to refer to intersex individuals is considered to be stigmatizing and misleading.

Prevalence

Estimates of the number of people who are intersex vary, depending on which conditions are counted as intersex. The now-defunct Intersex Society of North America said:
Anne Fausto-Sterling et al., said in 2000 that "dding the estimates of all known causes of nondimorphic sexual development suggests that approximately 1.7% of all live births do not conform to a Platonic ideal of absolute sex chromosome, gonadal, genital, and hormonal dimorphism"; these publications have been widely quoted by intersex activists. Of the 1.7%, 1.5% points consist of individuals with late onset congenital adrenal hyperplasia which may be asymptomatic but can present after puberty and cause infertility.
Leonard Sax, in response to Fausto-Sterling, estimated that the prevalence of intersex was about 0.018% of the world's population, discounting several conditions included in Fausto-Sterling's estimate that included LOCAH, Klinefelter syndrome, Turner syndrome, the chromosomal variants of 47,XYY and 47,XXX, and vaginal agenesis. Sax reasons that in these conditions chromosomal sex is consistent with phenotypic sex and phenotype is classifiable as either male or female.
In a 2003 letter to the editor, political scientist Carrie Hull analyzed the data used by Fausto-Sterling and said the estimated intersex rate should instead have been 0.37%, due to many errors. In a response letter published simultaneously, Fausto-Sterling welcomed the additional analysis and said "I am not invested in a particular final estimate, only that there BE an estimate." A 2018 review reported that the number of births with ambiguous genitals is in the range of 0.02% to 0.05%.
Intersex Human Rights Australia says it maintains 1.7% as its preferred upper limit "despite its flaws", stating both that the estimate "encapsulates the entire population of people who are stigmatized—or risk stigmatization—due to innate sex characteristics", and that Sax's definitions exclude individuals who experience such stigma and who have helped to establish the intersex movement. According to InterACT, a major organization for intersex rights in the US, states that 1.7% of people have some variation of sexual development, 0.5% have atypical genitalia, and 0.05% have mixed/ambiguous genitalia. A study relying on a nationally representative survey conducted in Mexico between 2021 and 2022 obtained similar estimates: around 1.6% of individuals aged 15 to 64 reported being born with sex variations. A higher estimate has been found in Chile, where 2.77% of individuals aged 15 to 64 self-identify as intersex.
The following summarizes prevalences of traits that some medical experts consider to be intersex :
ConditionSex specificityApproximate prevalence
Late onset congenital adrenal hyperplasia Female One in 50–1,000 births
HypospadiasMaleOne in 200–10,000 male births, prevalence estimates vary considerably
Klinefelter syndrome MaleOne in 500–1,000 male births
Trisomy X or triple X syndrome FemaleOne in 1,000 female births
Turner syndrome FemaleOne in 2,500 female births
Müllerian agenesis FemaleOne in 4,500 female births
Vaginal atresiaFemaleOne in 5,000 female births
45,X/46,XY mosaicismN/A, but usually maleOne in 6,666 births
47, XYY syndromeMaleOne in 7,000 male births
Congenital adrenal hyperplasia N/A One in 10,000–20,000 births
48, XXXY syndromeMaleOne in 50,000 male births
49, XXXXY syndromeMaleOne in 85,000-100,000 male births
48, XXYY syndromeMaleOne in 18,000–40,000 male births
49, XXXYY syndromeMaleLess than one in births
XX male or de la Chapelle syndromeMaleOne in 20,000 male births
Ovotesticular syndromeN/AOne in 20,000 births
XY gonadal dysgenesisPhenotypic femaleOne in 80,000 births
Androgen insensitivity syndrome Genetic maleOne in 22,000-64,000 male births
Androgen deficiencyN/ANo estimate
Idiopathic intersexuality N/AOne in 110,000 births
Iatrogenic intersexuality N/ANo estimate
5-alpha-reductase deficiencyMaleNo estimate
Aromatase excess syndromeN/ANo estimate
Aromatase deficiencyN/ANo estimate
AnorchiaMaleOne in 20,000 male births
Persistent Müllerian duct syndromeMaleNo estimate
46,XX/46,XYN/ANo estimate
Leydig cell hypoplasiaMaleOne in 1,000,000 male births
Gonadotropin-releasing hormone insensitivityN/ANo estimate
Familial male-limited precocious pubertyMaleNo estimate
Cytochrome P450 oxidoreductase deficiencyN/ANo estimate
Isolated 17,20-lyase deficiencyN/ANo estimate
Testicular dysgenesis syndromeMaleNo estimate
Penoscrotal transpositionMaleNo estimate
HyperandrogenismN/ANo estimate
HyperestrogenismN/ANo estimate
PolyorchidismMaleNo estimate
AphalliaMaleNo estimate
CryptorchidismMaleOne in 33–100 male births
Cloacal exstrophy MaleOne in 400,000 live births

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