September 15, 2011

Intersex is a blanket term used to describe individuals who possess bodies that the medical establishment cannot classify definitively as male or female. The occurrence is relatively frequent and is estimated at 1 in every 2,000 births.

The variations can be grouped into three major categories. The first encompasses people with chromosomal configurations other than XX (female) or XY (male), such as XXY, XXX, or a single X. Within this group are genetic mosaics—individuals with patches of XX and XY tissue (or other possible configurations) in their bodies. Also known as true hermaphrodites in the more archaic medical terminology, these individuals are born with both ovarian and testicular tissue. The second grouping is characterized by genetic variations in enzymatic pathways that affect the development of primary and/or secondary sexual characteristics independent of XX or XY chromosomal constitution. The final grouping is characterized by physiological variations that may or may not have genetic underpinnings, such as hypospadias (incomplete virilization of the penis), vaginal agenesis (absent vagina), cryptorchidism (undescended testicles), microphallus (less than 2.5 cm), and megaclitoris (greater than 0.9 cm), among others.

In prior generations, those born intersexed negotiated their way in society as best they could. However, advances in endocrinology and surgical techniques over the past 40 years have led to the alteration of intersexed bodies to conform to idealized male or female morphologies as a matter of standard medical procedure. This policy has been implemented in hospitals throughout industrialized countries beneath a cloak of secrecy and shame, where parents have often been coerced to make life-changing decisions about a newborn under extreme duress, and where there has been little consideration of how the child’s gender will develop or of future sexual functioning. Instead, the elimination of so-called ambiguities in the appearance of external genitalia has been the primary concern.

The policy has been applied absent public scrutiny until only recently, largely due to the belief that gender is the logical outcome of sex assignment and is therefore shaped by social learning. Nevertheless, the celebrated case of identical twin boys, one that was reassigned a girl at 7 months of age following a circumcision accident, calls this mind-set into question. Doctors performed reconstructive surgery to make the victim’s genitals appear female and administered female hormones at puberty to facilitate a typical female developmental trajectory.

If biology provides the canvas on which individual lives are painted, then one would expect identical twins to develop along similar gender pathways because they are genetic duplicates. However, if gender is shaped largely by social learning, then one would expect that the twin reassigned a girl at 7 months should adapt accordingly and with little difficulty, particularly with the help of castration to remove the masculinizing influence of androgens and the administration of female hormones at puberty. However, the reassigned twin mounted unfaltering resistance against attempts to guide her down a female developmental pathway. Estrogens prescribed at age 12 were frequently thrown away; surgery to extend the victim’s rudimentary vagina and facilitate heterosexual intercourse was rejected. At age 14, the twin finally convinced physicians to halt their course of treatment and to assist her to live as a male. Additional surgeries were then performed, including mastectomy and phalloplasty (creation of a male sexual organ), along with initiation of a regimen of male hormones. The twin now lives as an adult man and is stepfather to three children.

Formation of the Intersex Society of North America (ISNA) in 1993 marked the beginning of a movement to educate the public with the goal of removing the secrecy, shame, and unwanted genital surgery associated with intersex status. Intersexed individuals came forward with testimonies of physical agony associated with repeated unsatisfactory surgeries, and emotional pain associated with genital mutilation as well as the isolation, secrecy, and shame with which they were forced to live. Out of this has emerged the five tenets of ISNA: (a) intersexuality is a basic problem of stigma and trauma, not of gender; (b) parents’ distress must not be treated by surgery on the child; (c) professional mental health care is essential; (d) honest, complete disclosure is good medicine; and (e) all children should be assigned as boy or girl, without early surgery.

The intersex movement advocates providing the parents of intersexed newborns, as well as the intersexed children themselves, with honest and accurate information, including psychological counseling to address parental distress and referrals to other people dealing with the same issues. ISNA argues against using parental consent as a proxy for that of the intersexed child and believes that intersexed individuals should not be subject to surgeries designed to normalize their genitals without their explicit consent. They advocate the assignment of sex at birth based upon the best information available but without surgery or other medical intervention unless it is to address a life-threatening condition.

The case of the twins, along with countless other testimonies from intersexed individuals, suggests that initial sex assignment is not always congruent with the intersexed child’s subsequent gender development. For this reason and for reasons of social justice, ISNA advocates that only when the intersexed child is old enough to make an informed decision regarding the potential risks and benefits of genital reconstructive surgery should the option for surgical intervention be presented and considered.

SEE ALSO: Gender, Gender role, Hermaphroditism, Homosexuality, Lesbian, Queer, Transgenderism, Transsexuality

Suggested Reading

  • Colapinto, J. (2001). As nature made him: The boy who was raised as a girl. New York: Harper Perennial.
  • Dreger, A. D. (Ed.). (1999). Intersex in the age of ethics. Frederick, MD: University Press Group.
  • Kessler, S. A. (1998). Lessons from the intersexed. New Brunswick, NJ: Rutgers University Press.

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