About Intersex

What is Intersexuality?

Intersexuality (sometimes called hermaphroditism, a term that many intersexed activists do not like because it makes us sound like mythical creatures from Ovid rather than real people) is best described as atypical congenital physical sexual differentiation. In most but not all cases, the atypical sexual differentiation takes the form of ambiguous external genitalia.

It should not be confused with transsexuality, in which a person's natal physical sex is unambiguously either male or female, but in which the person develops a cross-gender identification and feels like a man trapped in a woman's body or vice versa. Intersexuality is about anatomical ambiguity at one or more levels – be it chromosomal, gonadal, connected with the external genitalia, hormonal, or a combination of these, rather than about gender-identification.

It should also not be confused with sexual orientation, homosexual or heterosexual. It is about the way bodies are from birth rather than about sexual attractions. When it is marked, it is not really possible to say whether an infant is born male or female, though the infant is invariably classified either as male or female. The classification is in fact arbitrary.

How Widespread is Intersexuality?

Physical sex tends to be conceived to be a rigid dichotomy, so that each given person is either unequivocally and unambiguously male or unequivocally and unambiguously female. The spurious premise that physical sex is dichotomous has deep roots in our languages, social institutions and systems of law. It is perhaps for this reason that there is such abysmal ignorance about intersexuality, although its prevalence is significant.

An American study estimates that almost one in fifty people – 1.7% of live births – involve some degree of atypical sexual differentiation, albeit to a small degree in most cases which does not have a major impact on lives. The study puts the incidence of significant degrees of atypical differentiation, which have a major impact on lives, at between one in five hundred and one in a thousand live births – between 0.1% and 0.2% of the American population.

Extrapolating from these figures suggests that between 45 000 and 90 000 South Africans are intersexed to a significant degree. It is sometimes claimed that South Africa has the highest prevalence of intersexuality in the world, which suggests that the incidence could well be higher than the extrapolation from the American prevalence. In the light of this calculation, it says a great deal that hardly any intersexed people are “out” and that there is abysmal ignorance about intersexuality.

How have the Intersexed been Treated?

Since the mid-1950s, a specific protocol for the treatment of infants born with ambiguous genitalia has been standard practice. The protocol derives largely from the theories of Professor John Money of John Hopkins University in Baltimore.

Money argues that gender-identity is a product of nurture rather than of nature, and that every person is a blank slate at birth as far as sexual identification is concerned. Up to the age of around 24 months, gender of rearing can be changed and the new gender will take, provided that rearing is gender-consistent and that the infant is provided with genitals which have a gender-normal appearance to foster all of this.

An aspect of the protocol was that a fairly crude test based on size of phallic structure in newly born infants should be applied in cases of genital ambiguity. A phallic structure with a stretched length of more than 2.5 cm was to be regarded as an acceptable penis and the infant was to be reared as male. A phallic structure with a stretched length smaller than 0.9 cm would be regarded as an acceptable clitoris and the infant was to be reared as female. A phallic structure between 0.9 cm and 2.5 cm in stretched length was to be regarded as an unacceptably large clitoris and was to be reduced or removed as a matter of urgency. In such cases, the infant was to be reared as female.

In almost all cases, surgery performed on infants and children with ambiguous genitalia was to be feminising on the grounds, as an American surgeon put it, that “it is easier to dig a hole than to build a pole”. Even unequivocally male infants with unacceptably small phalluses were to be reassigned surgically as females on the assumption that it would be damaging for a person to be reared as male with an inadequate penis.

The “John/Joan” Case

The standard protocol described above derived its main empirical support from John Money’s reportage of the outcome of a case called the “John/Joan” case.

“John” was one of a pair of genetically identical Canadian twins born unambiguously male. The twins were found to suffer from a condition called phimosis, in which the foreskin shrinks over time causing potentially dangerous constriction. The remedy is surgical circumcision. In the case of baby “John”, the circumcision by cauterisation went horribly wrong, and the entire penis was cauterised.

On the basis of John Money’s theories, the baby was reassigned surgically as female, becoming “Joan”. The theory predicted that the new gender of rearing would “take”. Money followed up the progress of the twins and reported that things were working out exactly as his theory said it would. The case became a textbook paradigm as a result, and helped to establish and entrench the imposition of surgery on intersexed infants and children.

The Truth about the “John/Joan” Case Emerges

The “John/Joan” case had not in fact gone the way John Money had claimed that it had done. His account turned out to be anything but the truth.

From an early age, “Joan” had been deeply uncomfortable in the female gender-role foisted upon her. Early in her teens, she forced her father to tell her the truth, and refused to present as female any more. “Joan” became “John” once again. “John”, whose real name is David Reimer, is married and has adopted children. He is deeply resentful of what John Money and his protocol did to him.

In 1997, Professor Milton Diamond and Keith Sigmundson published an account of the actual outcome of the “John/Joan” case. Milton Diamond is a leading expert on intersexuality and a long-standing critic of John Money’s theories. Keith Sigmundson is a psychiatrist to whom David Reimer’s family turned after David’s decision not to continue living in female role. The paper by Diamond and Sigmundson showed that the reported outcome of the “John/Joan” case was extremely misleading. Far from supporting John Money’s theories and the standard protocol of treatment based upon them, the actual outcome of the “John/Joan” case told directly against the theories and the protocol.

Impact of the Standard Protocol and South African Practice

This protocol remains standard in South Africa. The producer of a recent documentary of a recent documentary about intersexuality in South Africa estimated that something of the order of fifty intersexed infants each year have genital surgery imposed on them.

Ambiguous genitalia hardly ever constitutes an actual threat to the life or health of an intersexed infant. The imposition of surgery, by contrast, does bring risks. Young bodies grow, and the imposition of surgery in infancy almost invariably sets the child up for repeated genital surgery throughout childhood and adolescence. Standard practice discourages frankness with parents or with intersexed patients. Parents and patients are discouraged from having contact with others in a similar position and a great deal is veiled in pathologising mystery. A sense of repeated violations of one’s body, of dark secrets which need to be kept from others, a sense that there is something shameful about one’s body, and the feeling that one is alone are upshots of all of this.

There are intersexed adults who, having had surgery imposed on them in infancy and childhood, have grown to adulthood and have given accounts of the impact of the treatment. In almost all cases, the imposition of the surgery has blighted lives. Almost everyone I know in this position has attempted or contemplated suicide, and everyone has had to wage war to obtain access to medical records. There are a few studies of people upon whom surgery was not imposed – a number of adults with what is called “micropenis”, for example. The evidence suggests that letting people be is far better. As the sociologist Suzanne Kessler points out, the imposition of surgery is not because of a threat to an intersexed person’s health, but rather because ambiguous genitalia is seen as a threat to dominant cultures with their assumption that sex and gender are dichotomous.

In the recent documentary about intersexuality, a professor of urology from Medunsa, if I am not mistaken, Christie Streinman, trots out standard doctrine. One of the things which he notes is that baby boys with undersized penises are to be assigned as female as soon as possible and provided with “normal looking” female genitalia as early as possible. This involves vaginoplasty, the surgical construction of a vagina. His reason appears to be that one cannot allow a boy to grow up with inadequate male genitalia. There is a concomitant of this stereotype-driven vaginoplasty which the good professor did not mention. The surgically-constructed vagina is a surgically-imposed wond, and would close up in consequence of the healing-process. The surgically constructed vaginas are kept open by dilating them with surgical cones similar to dildos. This has to be done day in and day out over a protracted period.

Kessler writes: “Nowhere in the medical management literature is there a discussion of the repercussions of repeated vaginal dilation of a daughter by her parents. What meaning does the intervention have for inserter and insertee? Does the body part lose all its sexualized connotations or is it experienced by the girl as a violation by her parents – indeed as sexual abuse? Even adult women recovering from vaginal cancer and who need to dilate their new vaginas are unlikely to emerge from the several months of using a stent emotionally unscathed.”

Were the surgery clearly necessary for the preservation of life or health, this invasion would be a foreseen but unintended consequence which would be justified. Anal surgery and dilation is sometimes needed for preservation of life, for example. Where such surgery and the dilation which is a concomitant is not needed for the preservation of life or health, however, the practice is surely tantamount to medically-sanctioned sexual abuse.

John Money’s theories on which the standard medical protocol is based were called radically into question in 1997. He drew empirical support from a text-book case called the “John/Joan case”. A paper in 1997 showed that Money had misrepresented the outcome of that case and that, far from supporting his theory, it told strongly against it. In consequence of the 1997 revelations, the standard protocol for the treatment of intersexed infants and children has been called into question in the metropolitan countries. This development appears to have had little impact on standard practice in South Africa.

Intersexed activists argue that what is essentially cosmetic genital surgery should never be imposed on intersexed infants. Best guesses need to be made at optimal gender of rearing, and there are experience-based rules of thumb which can help. This surely does not require surgery. Nonetheless, it needs to be realised that even the most judicious best guess could turn out to be the wrong one for the person. Behavioural evidence later in the child’s life, or a judicious decision by the person later in life, could provide grounds for a change. An intersexed adolescent might make a free and informed decision to have some kind of genital surgery, and intersexed activists would support the right of the person to make that decision. What is unacceptable and a violation of rights is the attempt surgically to pre-empt choices.