Sophia Siedberg: My Response to CARES

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Sophia Siedlberg, OII-UK

TO understand the controversy surrounding Dr Dix Poppas and Dr Maria New, you have to look at what they are doing at face value and then ask yourself how what they are doing helps patients with Congenital Adrenal Hyperplasia (CAH).

Dr New proposes the use of dexamethasone to “ensure” that a “girl with CAH is born appearing normal” – not having ambiguous genitalia. Dr New made the fatal mistake of framing this already disconcerting proposal as “A means of preventing a child being born a lesbian.” The mistake being that if accusations of social cleansing and conformity were being leveled at Dr New, and if she hoped to avoid them then she certainly cannot do so now.

Chemically altering a fetus

I have to say this but chemically altering a fetus in order to make that fetus “fit for sex” when they grow up is going to invoke some very hostile responses, and using the word invidious to describe the activities of Dr Maria New would be an understatement at best.

This brings me on to Dr Dix Poppas who plans to “test” the same patients later on in life – around the age of six – with clitoral stimulation techniques. I suspect most sane rational people reading that are going to have some serious concerns about all this.

What is the rationale?

Logically one has to ask what the rationale behind all this actually is. Well, Dr New and Dr Poppas have yet to provide one. So far it seems to be about making children with CAH conform to certain social norms on what is a very intimate level. They counter the accusations of medical abuse by saying that most of the intersex activists questioning them are engaging in a “witch hunt.” But what is screening pregnant women for a particular condition or variation, seeking to modify the fetus in order to make them conform and then when all that has been undertaken “testing” the child’s genitalia for sexual function at such a young age to ensure they conform to the social dogma if it is not a witch hunt against children who don’t fit, not clinicians with controversial ideas.

Another comment defenders of Poppas and New, such as CARES, level at those intersex activists asking questions is that very few of those activists actually have CAH. Well this is true, but many of those objecting have been put through similarly traumatic “treatments” during their childhoods for exactly the same reasons, a medical witch hunt against children whose bodies do not conform to some ideal standard of biologically male or female.

The motivations for the treatment

I have 5 alpha reductase deficiency which is also known to be treated with similarly invasive procedures. As someone who was probably subjected to the worst examples of such treatment, I am unable to reconcile what Dr Poppas and Dr New are doing with my own sense of ethics. I may not have CAH but I am all too painfully aware of what some clinicians have done to me, a patient with 5 alpha, and yes the details of the “treatment” may differ but the motivations behind it are all too familiar.

I will say clearly that no I do not accept what Dr New and Dr Poppas are proposing and trying to establish as mainstream medical practice, for the simple reason that it is about trying to force a child to conform to ideals without the child actually having a say in the matter. Also the fact that we are talking intersex children here inevitably means that clinicians will focus on issues that are frankly not appropriate when dealing with children and yes, accusations of child abuse will happen. Not because the “treatment” appears invasive but also because of the motivations behind that treatment.

A simple question for CARES

I would ask CARES a simple question, have they not learned anything since the Reimer case? What was Dr John Money accused of? Trying to bludgeon a child into a given sex by what most would consider to be very questionable means. How is this any different? Oh they will claim that they are working on a basis of biological gender typing instead of the social conditioning model that Money proposed. Well no, this makes little or no difference if in 20 years time a child grows up after all this “treatment” and seeks to sue Poppas and New. I am sorry but the brutal truth is, that will be another life ruined, and there will be nothing New or Poppas can do about it when they go down in history in a similar light to Dr John Money. They may not like this but that is inevitable.

Open season on us all

As for CARES – those defending Poppas and New – I am glad they don’t cover 5 alpha in their remit because if they did I would be in a state of utter dread, if not sheer anger. If a group defending invasive and what can be seen as abusive treatment were making proclamations about 5 alpha, I would soon be telling them what I think of them. Even the good guys like Professor Milton Diamond know I would never back down on that. But there is the wider principle that regardless of what intersex variation is involved, if just one such variation is subject to such clinical malpractice – which is what it certainly appears to be – then that means it will be open season on all of us.

My own motivations

Which brings me onto my own motivations, and I will be totally honest about this, I deeply resent what was done to me as a child and yes I cannot help but feel a burning hatred of those who defend such practices. And quite frankly I don’t really care much for organizations like CARES who for whatever reason will always have cases on their books where a child will be growing up in what can best be described as a living death.

This is what it is like when you have been subjected to such treatment when it serves to make matters worse. This is my problem with CARES. I may not have CAH but belive me the treatment 5 alpha gets is just as bloody, cruel, dehumanizing and worse it is also done by people with smiles on their faces saying they are “doing it for your own good.”

A veneer over the rotten

CARES can throw up all those images of cute babies and teddy bears and smiling parents but all that does for me is tell me that the veneer hides something utterly rotten. Those objecting to what Poppas and New are doing are doing so for perfectly legitimate reasons. They have had to live with the consequences of such clinical insanity, something the parents and doctors in CARES have not to live with or, more importantly, live in with regards their own bodies.

Surgical and social rape

To this day I regard the “treatment” I was subjected to as a child to be little more than surgical and social rape. And those in organizations like CARES can scream “witch hunt”, “dissident”, “heretic” and “irrational” until they are blue in the face, but it will not change how I and most probably others feel and it will not put anyone off asking questions that should be asked.

One of the critics, Dr Alice Dreger, is someone I normally have a huge difference of opinion with, but even she is opposing what New and Poppas are doing, and I agree with her this time. And for me to agree with Dreger takes some doing believe me.

Stepford wives and sociopathic quacks

On a more basic level I will not be told by a bunch of Stepford wives and husbands, or sociopathic quacks how to lead my life, what to object to and what form my body should take, and I do not care about the condition specific argument they are putting up because the general principle is the same, the Stepford wives and husbands with their sociopathic quacks are also planning an open season on other intersex variations and I will oppose them and my motivations are not conformity, but self defense.