Fact Sheet on Intersex People

Intersex individuals are people who have atypical development of reproductive or sexual anatomy, including (but not limited to) external genitals that are not easily classified as male or female, incomplete development of internal reproductive organs, variations of the sex chromosomes, overproduction or underproduction of sex-related hormones, and abnormal development of the testes or ovaries. Intersex is an umbrella term that encompasses dozens of different medical conditions.

Some intersex characteristics are recognized at birth; others do not become apparent until puberty or later. Intersex individuals were previously known as hermaphrodites, a term that is inaccurate and often stigmatizing, although there is a movement by some to reclaim the term. Some now prefer the term DSD (disorders of sexual development) to refer to intersex conditions.

The prevalence of intersex conditions, or DSD conditions, is difficult to determine. Government agencies do not collect statistics on intersex individuals, and intersex conditions are not always recognized or accurately diagnosed. Approximately one in 1,500 to one in 2,000 infants are born every year with external genitals that are not easily identified as male or female. Some intersex conditions are more common — e.g., Klinefelter syndrome, in which male infants are born with an extra X (female) chromosome, occurs in one in 1,000 births. Others are much rarer – e.g., partial androgen insensitivity syndrome (PAIS), a variant response to male hormones, occurs in one in 130,000 births.1
In past decades, it was common medical practice to perform surgical gender reassignment or “reconstruction” of these different but generally healthy DSD bodies to make them “normal.” This surgery often happened/happens as early as birth (and often without parental consent or notice), but usually very early in childhood when the individual is too young to comprehend or consent to the procedure. This practice has become increasingly controversial, as some adults who went through the treatment report being physically, emotionally, and sexually harmed by the procedures. The Intersex Society of North America recommends social, legal, and parental gender assignment of children born with an intersex condition based on best judgment. It opposes any surgical gender assignment until the child is old enough to make his/her own decision.2
The majority of people with DSDs identify as men or women and do not describe themselves as intersex or transgender. Most people with DSDs view their identity as a lived experience and/or medical condition, rather than a gender or sex category.
The inclusion of intersex within the LGBTQQIAA framework is controversial within the intersex community.  While there are similarities in the way that DSD persons are pathologized and stigmatized, many see the association as bolstering the false impression that people with DSDs identify as lesbian, gay, bisexual, transgender or queer and conflating intersex with the LGBT movement, thereby hindering intersex visibility and intersex-specific resources.

1. How common is intersex?, Intersex Society of North America, http://www.isna.org/faq/frequency.
2 What does ISNA recommend for children with intersex?, Intersex Society of North America, http://www.isna.org/faq/patient-centered.

 

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