Karin: “The Silent”

LOTL have published a feature by OII Australia member Karin on “The Silent”.

The Silent, LOTL, June 2009

The Silent, LOTL, June 2009, pages 40 & 41.

PROFESSOR Milton Diamond of the University of Hawaii’s Pacific Center for Sex and Society estimates the prevalence of intersex – having biological characteristics both male and female – as 1 in 100.

Some academics believe the ratio of intersex people in the population is higher, at 1 in 75 or 1 in 60.

Regardless of the actual numbers though, more people are being born each year with conditions that cause intersex, although not all of them will know it. Even fewer will actually identify themselves as intersex, because intersex itself is enshrouded in mystery and silence, deep and profound.

Intersex activists want that silence to end, now.

Socio-medical Emergencies

In much of the western world, when an intersex child who is obviously intersex is born, most often a socio-medical emergency is declared, the baby is whisked off into the operating room, and its genitals are fashioned into some semblance of the cosmetic ideal of male or female.

Many times, the medical records are destroyed or misplaced – “to spare the patient anguish,” it has been said.

Nowadays things are a little different – both parents are usually admitted into the postnatal decision-making process. That has not always been the case – mothers were often left out in the past, on the basis that knowing the truth might cause them upset. Possible upset was justification for never telling the child what had been done, as well.

That scarring down there? Surgery for ‘a twisted bowel.’ Those regular injections from puberty onwards? Vitamin shots. The doctors gathered around the hospital bed, studying your private parts with such fascination? Never mind all that.

Compliance & Anguish

Most parents did their best to comply with doctor’s demands that they say nothing about it to their child. As the white-coated ones began to lose their lustre, though, parents began to question, to doubt their compliance, and to experience deep misgivings, even anguish.

Intersex surgery still continues, despite that, and many medicos continue to promote it with enthusiasm. Others are not so sure.

Some neonatal surgeons now admit they have no idea whether any such surgical outcome is successful or not, and whether the children continue to live as the sex they were made to resemble or reject their sex assignment altogether. Without widespread long-term studies, surgery on intersex newborns can be described as experimental at best.

As a result, intersex people ask that all such surgery, except where it is required to save life, be halted in all hospitals where it is performed, immediately.

The SFHRC Report

The San Francisco Human Rights Commission effectively made the same request back in 2005 – immediate cessation – with its investigation into “the medical ‘normalization’ of intersex people.” The Commission heard testimony from intersex Americans as well as some Australians who had specially flown in to do so, and their stories make for difficult reading.

The Commission’s findings are stark, including:

  • ‘Normalizing’ interventions done without the patient’s informed consent are inherent human rights abuses.
  • ‘Normalizing’ interventions deprive intersex people of the opportunity to express their own identity and to experience their own intact physiology.

The Commission’s recommendations are equally clear, and include (with my emphases):

  • ‘Normalizing’ interventions should not occur in infancy or childhood. Any procedures that are not medically necessary should not be performed unless the patient gives their legal consent.
  • A patient-centered treatment model should be implemented which emphasizes peer support, access to information, openness, treating the child as the patient, honoring the person’s right to make informed choices about their own bodies, and delaying treatment until the patient can make informed consent.

What About the Rest?

Nonconsensual surgery is just one aspect of intersex. The number of intersex births where surgery is usually performed is estimated at 1 or 2 in 1000. If the prevalence of all intersex conditions is up to 1 in 60, though, where does that leave the rest?

The answer is, effectively, “out there in the land of limbo.” Most intersex people simply don’t know they are intersex, because their conditions were not detectable at birth.

The best-known conditions that can cause intersex are Congenital Adrenal Hyperplasia (CAH), the XXY karyotype, and Androgen Insensitivity Syndrome (AIS), in both its Complete (CAIS) and Partial (PAIS) forms.

A teenage supermodel with CAIS was central to an episode of House – Skin Deep – screened in the US on 20th February 2006. The Softer Side, broadcast on 23rd February 2009, centred on a child born as a genetic mosaic, whose parents consented to intersex surgery to make him a boy.

There are many more intersex conditions than just these, though. Contacts working for the World Health Organisation (WHO) informally estimate that there are hundreds of known intersex conditions, some of which contain their own large range of variations, and that some intersex may be idiopathic – of as-yet unknown cause, and iatrogenic – caused by medical treatment.

In the Environment?

Then there are the ever-increasing number of intersex cases attributable to Endocrine Disrupting Chemicals (EDCs).

EDCs were first manufactured in the 1930s. The first signs of reproductive changes caused by EDCs appeared in 1938. Diethylstilbestrol (DES) was heavily promoted as an anti-miscarriage drug from the 1950s onwards. The negative effects of Dichloro-Diphenyl-Trichloroethane (DDT) were documented after heavy use commenced in the 1960s. Steroids and other xenohormones were first detected in water supplies in the 1970s.

The postwar period – immediately after World War II – saw armaments manufacturers searching for peaceful uses of their immense chemical stockpiles, and the march of EDCs into the environment began in earnest.

XXY Men, Women & Other?

XXY is particularly interesting, as the experience of XXY people mirrors that of many intersex men and women.

According to Monash Institute of Medical Research’s Andrology Australia website, “Klinefelter’s Syndrome is the most common chromosome disorder in males (47XXY), affecting approximately 1 in 650 males. While this is estimated to represent almost 15,000 males in Australia, up to 70% of cases remain undiagnosed.”

Some of those 70% only discover their XXY karyotype later in life, while attempting to impregnate their partner. Medical research papers and brochures recognize the existence of XXY men and boys, and their possible medical problems, but almost wholly ignore the many XXY women as well as those XXYs who are both sexes or neither.

Silence… The Least & The Greatest Abuse

Intersex people face many problems in our society – the lack of human rights, no patient-centred medical treatment, no protection against discrimination and vilification, non-recognition of intersex in official documentation, and exclusion from the right to marry if they are neither a man nor a woman.

They endure all the usual forms of abuse – physical, psychological, sexual. Many are subject to a unique form – medical. But the biggest abuse of them all might appear small in comparison – silence.

The silence about intersex is deafening. Its roar has drowned out intersex people’s voices within the wider community as well as the LGBTI one.

Intersex activists look forward to their voices being heard, and to be accepted as full members of the human family, soon, however.