Saturday, 15 March 2014

Why DSD Is Destructive For Human Rights

The last few weeks the world media has been covering the outrage surrounding Uganda's decision to make homosexuality illegal, narrowly missing its original goal of making it punishable by death. Instead anyone found to display homosexual behaviour is sentenced to life in prison. According to President Museveni of Uganda his inquiry into whether or not homosexuality is genetic or social behaviour was answered by 'medical experts' that it's fully learned behaviour [1]. In countries such as Iran, Mauritania, Saudi Arabia, Sudan and Yemen, as well parts of Nigeria and Somalia homosexual behaviour is punishable by death. In another seventy countries people are imprisoned for such behaviour [2].

As exemplified by the statements by Uganda's president, the entire witch hunt against individuals with homosexual or bisexual preferences is based on misinformation, the spreading of fear and outright lies. The most remarkable and least reported on part of this is the reasoning behind such decisions to make something which does not affect society as a whole into something on the same level of criminality as murder and terrorism. Here conservative religious values on sexuality combined with a political agenda appear to be the most likely culprit for inciting such blatant and horrific violations of human rights.

Yet it doesn't end with homosexuality. Many other types of behaviour are also punished in a similar manner, and astoundingly around the world including in the most rich, prosperous Western countries millions of infants and children undergo forced surgery to remove unwanted features from their bodies. Not for medical reasons, but simply because society deems them to be 'unwanted' and 'uncomfortable'. These are the individuals who were unlucky enough to be born with a body configuration which differs from a biologically male or female body in genotype, phenotype or both. Those born with such an intersex condition only rarely need any kind of medical help during their life and are generally unaffected by it, health-wise. Human rights activists have been fighting for their right to decide about their own body as well, albeit in a far more limited fashion than for homosexuals.

Quite recently this struggle for human rights for intersex individuals took a sharp turn for the worse, as supposed physicians decided to change the terminology for intersex, indicating that from then on it should be called 'DSD', or Disorder of Sex Development. While seemingly a minor change, the implications of this is astounding, especially on a psychological level. Just imagine how it changes how an individual can present and be perceived by its environment.

With intersex you can say 'I am intersex' and 'our child is intersex'. With DSD this becomes 'I have DSD', 'I have a disorder', or 'Our child has a disorder'. The automatic stigma is obvious. To society it seems clear at that point that the child was born with some horrific mutilation but that surgery and therapy will take care of it, and that the individual who reports to have DSD has something on the level of a mental or physical deficiency, as though they are some kind of retard, if you'll excuse my language. This whole naming scheme completely nullifies any attempts made by intersex activists to make it a discussable, socially acceptable thing to be.

As an intersex activist myself this is exceedingly disheartening to watch, especially when some intersex individuals also assume this DSD term, as though it will somehow improve their situation. To me this is more an indication of how horribly medical society treats intersex individuals, that the mere promise of better treatment or a reward will have them crawling back to their masters. I have been in this situation myself with the Dutch physicians long enough to know how it works. In the end it just leaves the affected individual scarred and traumatized. We don't need more victims.

It all comes down to scientific facts, whether it's about sexual preference or the phenotype of one's body. One is born with it and nothing but unwanted, invasive surgery is going to change this to some extent. Sexual preference is hard-coded in the layout of a specific part of the brain and the complex interaction between genes during development makes it more astounding than not that so many children are born with a phenotype which gaves at least the appearance of them being male or female. This is also a part where I have been extremely lucky.

Being born in the Netherlands, where so-called 'normalization surgeries' on intersex infants are common place, if it had been discovered at birth that I also have female genitals I would have a scar now on my abdomen through which they would have ripped out any kind of female organs they could find, including the vagina, ovaries and the like. I wouldn't have been told about this until maybe as a teenager or adult, if at all. I would have had to deal with this intense feeling of loss and of being violated. This is why getting this reconstructive surgery is also so important to me: I was lucky enough to escape such barbaric surgery as in infant, but without this reconstructive surgery I might as well have been the victim of it.

That I want surgery is not due to an immediate medical need or urgency. It is my personal choice to shape my body the way I want it, using the organs I was provided with. What I desire is far less significant than what a transsexual person would undergo with a sex-change surgery, which makes it ever so more bitter that it is so hard for me to find a surgeon for it. In the end it is all about personal choice with intersex, homosexuality and transsexuality. If you know absolutely certain that something will make you happier and you don't harm others with it, then it should be nobody else's business.

Yet this is exactly why DSD is so harmful: it removes the option of choosing for oneself, as by designating it a 'disorder' which medically means 'a disruption of normal physical or mental functions' (Oxford, 12th edition). If strictly interpreted this would make anyone who is infertile, has reduced fertility or anything even vaguely related to anything which could be the result of genetics or development issues a DSD sufferer. It would also mean that anyone who is intersex yet fertile not affected by DSD. This shows why it is sheer lunacy to use such a term instead of the more accurate 'intersex'.

A disorder is by definition something which has to be acted upon and treated, to restore normal functioning. Looking at my own case, however, if I had grown into the role of being a hermaphrodite from a young age and would just have had those few surgical 'tweaks' to steer things into a direction I would feel more comfortable with, then I would not be suffering from severe PTSD and have an innate distrust against medical professionals. The past decade to me has been the most horrific I could imagine, completely thanks to the Dutch medical system. Yet it's not just the Netherlands. While I fled to Germany to escape the persecution I suffered in the Netherlands with so far mixed results, places like for example the United States are also quite hostile against intersex individuals. Take for example this entry from the FAQ at the North-American Accord Alliance, a self-professed intersex organization:

"“Hermaphroditism” and “pseudo-hermaphroditism” are outdated terms that used to be employed for some forms of disorders of sex development (DSD). These terms have been abandoned because they were misleading and stigmatizing." [3]

There are many things wrong with these two sentences. First of all, the medical term used for my intersex condition here in Germany as displayed on all of my medical documents is 'Hermaphroditismus', or hermaphroditism. The term DSD is not used in Germany in any significant sense. Hermaphroditism is not an outdated term and has not been abandoned. I also vehemently disagree with the 'misleading' and 'stigmatizing' parts. The misleading parts because the formation of the word in Greek mythology is extremely fitting, with a hermaphrodite being formed out of a male and female as a single being, which is exactly what the condition is. There is no stigma either. What stigma would this be, anyway? People generally view hermaphrodites in wonderment, amazement and in some cases even a kind of reverence. True, there is the occasional individual who just can not comprehend a single individual possessing both male and female genitals, but those are the exception.

Further on the Accord Alliance site we find further claims that DSD is the perfect term and that a child afflicted by this horrible condition can be saved through the proper surgery and therapy. Guess who will benefit the most from these expensive undertakings? Hint: it's not the parents or the child. The skeptic in me finds it hard to deny the possibility that ultimately the term DSD was invented as a mixed result of religious conservative fears for the unusual and the desire for more money by medical and psychological 'professionals'.

To most intersex individuals it is clear that 'DSD' is a horrible offence, though, and we refuse to apply it to ourselves. Organizations such as Accord Alliance do not represent intersex individuals. They are more like president Museveni: touting scientific nonsense as an excuse for their continued existence and relevance. Their existence neither benefits nor sustains humanity's progress towards an accepting and progressive society, instead forcing it down towards a medieval-level of ignorance and suffering.



1 comment:

Bidandi oscar david said...

I think every country has its own culture,if Uganda signed against the homosexuality bill,its there wish in protecting its culture,because its true gay is not genetic but learned,but again it does not mean THAT THESE PEOPLE Should be segreagated no,they need to be shared with is one of the wayz to get them out of that bad behavior