*I* is for Intersex

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An Apologia?

In something of an unusual move, Alice Dreger has issued a joint statement, along with Tiger Devore attempting to distance themselves from the orthodox practices currently adhered to in intersex clinical practice.   Tiger Devore ‘s statement is a masterpiece of succinct honesty.  Tiger admits he was taken in by clinician’s promises of openness and transparency.  He admits he was mistaken.  He apologises for his error.

By contrast Alice Dreger has written an apologia for her part in the adoption of D$D in clinical practice. Whilst criticising the incrementalism of clinical practice, she adopts exactly that practice in careful separating, and legitimising where interventions are still justified.

Conditions known to increase physical morbidity and mortality (e.g., cancers) should obviously be treated, but all elective endocrinological and surgical interventions should wait.

Physical morbidity translates as disease.  The most well known endocrine dysfunction that can lead to someone being born intersex is Congenital Adrenal Hyperplasia.  The endocrinological management of CAH has sometimes been described as being as much an art as a science.  None of which justifies the concomitant assumptions that such infants/children should be subjected to Infant Genital Surgery before an age they are able to decide for themselves what is right for them.

Similarly,  the possibility of cancer has been used for decades as reasoning to pre-emptively remove healthy internal testes from all  Xy women born with AIS – Androgen Insensitivity Syndrome.  The pre-emptive use of surgery has ruled out developing practical means of monitoring the health of women whilst they retain their testes, and the endogenous hormones – instead they are forced into a lifetime of taking HRT, and often struggle with osteoporosis in later years.

Intersex protocols were trenchantly questioned recently in a BMJ editorial.  An article that clearly stated that clinical practice cannot continue into the future as it has done on the past: the article admitting that intersex infants continue to be mis-assigned to the wrong sex. In the 21st century clinicians know they are mis-assigning intersex children.

It is unconscionable.

To read Alice Dreger’s statement you wouldn’t know anything of the part she played in having the D$D protocols adopted in Chicago in 2005.  A neutral observer would have little clue of the determined efforts that AD has made over the years to ensure that D$D protocols are used to measure the quality of an intersex child’s development.

Here you can read AD carefully separating intersex conditions from D$D, and in doing so revealing their real intent.

Children born with intersex conditions and differences of sex development (DSD) should not be subjected to medically unnecessary surgeries and hormone treatments until they are old enough to decide for themselves if they want these interventions.

D$D is the pathologising terminology that Ms Dreger and others encouraged the adoption of in the repeatedly stated belief that ever more clinical investigation would lead to improved clinical treatment values.  It has done nothing of the sort.  The 2005 Chicago Consensus Statement reified medical authority over the decision making process, a process that continues to deny people born intersex their rights of personal autonomy and bodily integrity.

AD goes on to express regret for letting down David Sandberg and Accord Alliance in withdrawing from two research projects. Neither  speak for the rights of people born intersex. They speak for clinicians interests. At no point in her statement does Alice apologise to anyone born intersex for her part in enabling clinicians to pathologise intersex variation as an illness to be fixed by surgery, hormones, and sometimes coercive psychology.

It was AD that insisted D$D meant ‘disorders”, and only recently discovered the phraseology of “differences” instead. It was AD that insisted the adoption of the D$D protocols would lead to far better diagnostics – for which read genetics – that would improve treatment values.

You will search in vain for any recognition of the work intersex advocates made in bringing intersex human rights issues to the attention of the UN agencies, of the EU FRA – Tiger Devore does, and he also admits he was mistaken to be taken in by clinicians promises of open-ness and transparency.

So much of what AD writes in her statement is centred around themselves, rather than the issue at hand – securing the rights and protections for people born intersex.

The genuine hard miles have been covered by intersex affected activists and adult, along with allies, in raising awareness of the human rights abuses that continue to be enacted on people born intersex.  A situation vehemently criticised by the UN Special Rapporteur on Torture, Juan Perez, in 2013.  A situation that has been acknowledged in the publication of the EU FRA Statement earlier this year, a situation publicly acknowledged by the UN High Commissioner for Human Rights.

Intersex human rights protections were recognised earlier this year in the world leading legal protections adopted in the Maltese GIGESC legislation.

Ms Dreger’s statement isn’t an apology for  the adoption of D$D.  Ms Dreger’ statement is an apologia for how poorly the D$D protocols have worked in practice.

It is all too little, and far, far too late.