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Intersex

Atypical congenital variations of sex characteristics

  • 32 min read
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Through Chromosome, Nomenclature and Taxonomy

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 (0.02%–0.05%). 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% (one in 5,500 births) 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 (1.5 percentage points) and Klinefelter syndrome, should be counted as intersex. Some intersex people identify with a gender different from their assigned sex, though this is not exclusive to intersex people.

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 when applied 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" (DSD) 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 (ICD), the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM), and many medical journals classify intersex traits or conditions among disorders of sex development (DSD).

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:

Intersex people are born with sex characteristics (such as sexual anatomy, reproductive organs, hormonal patterns and/or chromosomal patterns) that do not fit typical binary notions of male or female bodies.

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 (differences of sex development)" 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 (now known as InterConnect 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" ("Hermafroditus an ad testamentum adhiberi possit, qualitas sexus incalescentis ostendit"). Similarly, the 17th century English jurist and judge Edward Coke (Lord 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 (which is also called Androgynus) 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 (microscopic appearance) 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, driven both by concerns about language and by a turn toward understanding 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 (ISNA) 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.

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