Karin: “Fact, fiction and intersex lives”

Middlesex, by Jeffrey Eugenides.
In a world as heavily mediated as ours, where the boundary between reality staged for entertainment and reality documented for information is blurred, and sometimes lost altogether, works of fiction often encroach upon the territory of fact – the danger is that we may not be able to tell the difference.

That certainly happens when novelists write stories based on real people’s lives, and it occurred when Jeffrey Eugenides’ book Middlesex became a bestseller.

Many of Middlesex’s readers became convinced that the life of its male protagonist Cal, birth name Calliope, was typical of intersex lives in general and of someone with 5-alpha-reductase deficiency (5-ARD) in particular.

This confusion between fact and fiction lead to Oprah Winfrey inviting Eugenides onto a show about intersex – Growing Up Intersex – where other guests were, as to be expected, intersex people but also Dr Alice Dreger.

Dreger’s presence further blurred the line between fact and fiction. She was presented as an expert – a medical doctor, many viewers assumed.

At a crucial point in the show, Dreger was asked to explain terms. “There’s issues of sex, which is biology – that’s male and female and intersex,” she began.

“Transgender is about a gender identity. And so when somebody is born, everybody gets a gender assignment. Even kids who are intersex get a gender assignment as boy or girl,” she continued.

Then, in conclusion, “What transgender is, is when you feel the assignment you got was the wrong one. So when you grow up later and you say, ‘You know, they said I was a girl but I’m really a boy,’ or vice versa.”

Three times fiction was confused with fact. Three strikes and you’re out, and so is Dreger. She has a Ph.D. in History and Philosophy of Science, not medicine.

Her statement about sex – male, female, intersex – portrays intersex as a third sex. It isn’t. When Australian Human Rights Commissioner Graeme Innes proposed legally instituting intersex as the third sex, he was censured for it – by intersex people.

Dreger implies that intersex people who reject the sex (not the gender) they were assigned to at birth – whether male or female – often with surgery and hormone treatment and always without their own consent, are to be classed as transgender when they do so.

That is a suggestion that intersex people thoroughly reject. Some intersex people may also identify as transgender, having been channelled through transgender organisations on seeking help with medical and legal matters, but intersex itself is not somehow transgender, or a subset of it.

LGBT does not somehow also include I. On the other hand, intersex people are pleased if such an organisation labels itself LGBTI, and then includes I-for-intersex people in its activities as full and equal members. Intersex people, those who are members of OII at least, welcome supporters and alliances.

Intersex is intersex, though, regardless of whether an intersex person rejects birth assignment as male in order to live as female, or vice versa. Such an intersex person simply asks the law and medicine to admit to a mistake having been made at birth, and to correct their birth records without demanding that they jump through any needless hoops or further surgery or unwanted HRT.

The fictionalization of fact has long characterized public and professional – media, medicine, psychiatry – discourse about intersex. It exists in the law, legislation and human rights reform, as well.

It is particularly in evidence when intersex people themselves are forbidden from speaking for themselves, and do-gooder ‘experts’ appoint themselves to do so on their behalf. Fiction really comes out of the closet then, masquerading as fact.

The confusion of facts with someone’s fictive depiction of it is not just annoying – it can be deadly.

Middlesex, by Jeffrey Eugenides.

Eugenides has Calliope make the decision to live as Cal after she learns she was born with the XY karyotype, despite growing up with a female gender identity – confirmed by the sexologist in the book – and an apparently female body.

At puberty, many, perhaps half, of 5-ARD children choose to live as male, and not the females they are most often raised as. Despite this, many medical experts choose to believe that 5-ARDs must always be raised as males because they will virilise at puberty and live as male thenceforward.

Some medicos are now being more realistic, recognising that given the child may go either way at puberty, best to avoid enforcing either sex surgically and hormonally upon 5-ARD newborns.

Try being an adult 5-ARD female in some parts of the world and see where it gets you when presenting at a public hospital with an unrelated dangerous medical condition.

I know of one such woman. She entered a British NHS hospital with a serious eye complaint needing immediate attention lest she lose her sight. The attending nurse demanded she go straight off to the local Gender Identity Clinic (GIC) for treatment there instead. My friend’s medical record had her down as male. Apparently, all 5-ARD have to be male in the NHS’s book.

She refused to comply, on the grounds that the GIC could do nothing for her eye. The nurse persisted in refusing aid. My friend has a medical degree, though she does not practice, and finally managed to obtain treatment. Her eye was saved, but her sight will never be what it would have been had the nurse not refused to do his duty.

This experience reminds me of things I have experienced first-hand here in Australia. There is a persistent belief amongst some Australian GPs that the bodies of intersex females are somehow made of different stuff to those of other females.

My local general practitioner was convinced that an intersex woman’s breasts are not the same in nature as non-intersex breasts, and thus that intersex women simply cannot contract breast cancer. The large, growing lump in my right breast could not be cancerous. Impossible!

So my GP refused to order tests, downplaying the seriousness of the case. Months passed, and the lump grew and grew.

I was concerned that the lump may be malignant, or at least a cyst resulting from what foreign-based doctor friends who also happen to be intersex suspected could be the result of being prescribed unbalanced HRT.

Eventually I persuaded another GP to order tests, and the lump was found to be benign. Had it not, the blurring between fact and fiction that existed in my GP’s mind, as it does in so much medical opinion, might have ended in my demise.