Intersex and Medicine: The Fourteen Days of Intersex

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ON the Fourth Day of Intersex we draw your attention to intersex and medicine, of intersex and its uneasy relationship with medicine and medical practitioners

What is intersex?

Intersex people are people who, as individuals, have congenital genetic, hormonal and physical features that may be thought to be typical of both male and female at once. That is, we may be thought of as being male with female features, female with male features, or indeed we may have no clearly defined sexual features at all.

How does medicine view intersex?

Intersex differences are so confronting to society that they have been consigned to medicine as a problem to fix in much the same way homosexuality was seen by medicine until the 1980s. Although medicine no longer labels same-sex attraction as disordered, many non-medical people still see it through the lens of disease and mental illness.

Intersex is a scientific term coined by German scientist Richard Goldschmidt in the first edition of the professional journal Endocrinology, published in 1901. The term was meant to describe differences in sex anatomy that were not hermaphroditic. An hermaphrodite, in science, is a creature with both male and female genitals and reproductive organs that are fully functional.

No human being known to science is now or ever has been an hermaphrodite. Nonetheless medicine continued to refer to intersex people as “hermaphrodites” and “pseudo-hermaphrodites” well into the 1980s.

The first intersex support groups began to appear in the mid-1980s. These first groups were largely made up of parents and doctors trying to manage their child’s differences. Both groups then and now point to being born intersex as the cause of serious health problems. I can say that is, by and large, a lie.

The intersex diagnosis most frequently singled out as being a medical emergency is Congenital Adrenal Hyperplasia (CAH). CAH is a difference of the adrenal gland that leads to the production of high levels of testosterone. This testosterone causes masculinization so that newborns may appear to have ambiguous genitals or to be completely male-like.

Ambiguous genitals do not cause illness or distress to the newborn – here I am not referring to closed urethras or other problems that might be life threatening. We do not oppose life-preserving medical interventions.

In the mind of the observer, not the observed

The distress and dis-ease lies in the minds of the observers and not the observed. CAH has other effects with a common one being the inability for the effected person to metabolize salt. That problem is manageable with mineral cortical replacement in much the same way that diabetes is managed with insulin replacement therapy. Salt wasting itself is in no way intersex, although the underlying diagnosis of CAH can lead to being born intersex.

Intersex is anatomical differences of sex irrespective of diagnosis or underlying differences that may lead to illness. Cosmetic changes to intersex children’s bodies in no way effect the underlying cause and thus the intersex difference itself remains despite outward appearances. Intersex is not amenable to “cure” despite the false assurances of some medical practitioners.

The problem is society’s, and that devolves down to our individual parents’ and friends’ inability to accept us as we are made. Their lack of acceptance is perpetuated by doctors who would rather reshape a newborn’s body than than tackle a parent’s phobias, and a medical establishment that prefers to offer “cures” and surgeries than help individuals understand that their differences are natural.

Medicine as the intersex normalization police

Medicine, then, has become the normalization police where intersex is concerned. In the 150 years since Herculine Barbin’s death – Barbin was the first intersex person to write an autobiography – medicine has never attempted to argue for our acceptance. Rather, it argues against our right to anatomical autonomy.

For intersex people a crisis in our relationship with medicine came in 2006. From the mid-1980s intersex people began to form support groups and share personal histories and medical information. From that point onwards we became increasingly aware that the outrageous breaches of our rights were widespread, and we began to realise that medicine had long taken a systematic approach to silence us, to shame us to and to cover up our lives with a veil of secrecy.

The beginnings of intersex activism

As a result intersex people began to become activists. In doing this we quickly understood that our natural allies were lesbian, gay, bisexual and transgender people. They were not our allies because we shared a sexual orientation or because we were somehow transitioning. They were our allies because we are all subjected to the same oppression – homophobia. Society’s reaction to intersex is fear of the monstrous and fear of bodies whose sexual orientation can only ever be uncertain.

Medicine decided to nip intersex activism in the bud and put as much distance between intersex people fighting for our rights and a medical establishment that wished to perpetuate its control over our bodies and to continue to be the guardians of the social sex binary – the belief that one can only be exclusively male or exclusively female. Medicine and its supporters wished, in short, to continue its practice of intersex erasure unabated.

Intersex activists are an uncomfortable impediment to total medical control over intersex bodies and lives.

Medicine and its supporters manufacture consensus

To achieve that separation and maintain control, a group of 50 endocrinologists and other medical specialists gathered together in Chicago in 2006 to consider their problem with us. They put forward the fresh notion that intersex was a nebulous term loaded with prejudice and controversy. To “make” our “lives easier” and to silence the dissidents they renamed intersex as “Disorder of Sexual Development” – DSD.

In one fell swoop intersex people went from being natural biological variations as described by Goldschmidt to “disorders”. Medicine planted a flag on the peak of disease and intersex was written upon that flag.

This “disordering” of intersex has resulted in a proliferation of protocols that call for early surgeries on intersex children’s bodies.

Disordering has enabled unconscionable medical experimentation on fetuses thought to be intersex before they are even born.

Disordering has enabled experimental surgeries and sexual stimulation by machines to test their efficacy.

Disordering has resulted in countless women having their gonads removed unnecessarily.

The new term DSD has enabled medicine to go “full steam ahead” on intersex bodies and lives at a time when it appeared that intersex activism might begin achieving its aim of fundamental human rights for all intersex people everywhere.

How do intersex people view medicine?

In a word, unhappily.

Gina Wilson
Chairperson, Organisation Intersex International Australia Limited (OII Australia)