Who is in control of the DSD Movement?
This analysis have been removed because ISNA has now closed its doors. For more information about DSD: please read:
Why the Organisation Intersex International is not using the term "Disorders of Sex Development"?
Stepford Husbands, Stepford Wives.
By Sophia Siedlberg.
The following Statement was made on an American website trying to bring about mandatory screening of CAH, and the use of a treatment devised by of Dr. Perrin White. This organization goes under the rather strange name of "Save Babies Through Screening" (SBTS)
prenatal therapy with a synthetic hormone called dexamethasone throughout pregnancy can allow proper development of the external genitalia in female fetuses... [they] are then born with normal external genitalia and do not require corrective surgery."
The problem is that it seems to be a statement that has this eroding effect. Emi Koyama of the Initiative seems to have picked up on the statement, asking the obvious question about why such treatment would be deemed necessary. On this I am in agreement with Emi Koyama because what she has noticed is that there is a culture of "Well, if we cannot use normalizing surgery, we will normalize another way".
However, I find myself asking some awkward questions. You see this statement from SBTS is just the latest from numerous "Support groups" claiming to support intersex people but in truth are about "Parental rights". What Emi has mentioned is the tip of the iceberg, and she was right to mention it too. I would like to explore this "Parental rights" bit a little further. Often I have encountered "support groups" that seem to have the clear objective of making it appear that only the parents suffer whatever condition the child has. They are mainly based in the US if not exclusively at the time of writing.
The first question is where do affected individuals go for help? If the parent/doctor biased groups are more prominent, then the individual is faced with some difficult problems. Thankfully there are patient advocacy and support groups like the AISSG and OII. Who will always address the questions of affected individuals as well as parents.
However, the increasingly prominent "Parent/Doctor" groups, with the one US organization people used to use as a lifeline (ISNA) becoming parent/doctor biased in 2001, seem to want to make sure that only parents and doctors are given a voice. The SBTS is probably the latest in a long line of parent/doctor biased groups. And the agenda of these parent/doctor biased groups makes depressing reading.
And the problem is no one is allowed to question them. Confront any parent/doctor biased group and you will get the stock: "What do you know; you are not a parent" and if (Heaven forbid) you are an affected adult; you are as good as accused of trying to undermine the institution of family. The parents in parent/doctor biased groups love to present their status as parents, and use it to make people like myself feel guilty. "You will never be a parent" (Oh, and whose fault is that? With past examples of normalizing vivisection that would fill an entire library if fully documented).
I do not buy it, and I do not accept the guilt trip, the only parents I am willing to engage discussion with would be those who meet others half way in sensible support groups like the AISSG and OII. That is where I have ended up these days, talking only to parents who I know take the time to think and put themselves in the shoes of their children. These parents put the interests and the future of the child first, which is more than can be said of the parents who make up these parent/doctor biased support groups.
Having made that distinction clear, who are these parent/doctor biased "support groups" and how does someone spot them? Well the SBTS and ISNA are two clear cut examples, they advocate screening, prenatal intervention (To replace infant surgery) and in some instances, eugenics. That usually starts with decentralized eugenics. (Where the parents are offered the "choice" of aborting the child) then there is social pressure ending with centralized eugenics (where abortion becomes mandatory).
While I have no issue where genuine health issues are concerned (CAH can cause a number of problems, including salt wasting), pre natal screening, "quality of life" arguments and in-utero manipulation do not wash. In-utero manipulation is what exactly? I can hear some saying "Designer babies", but for me "Experiments towards baby design" would be a better description.
And this is where the problem truly lies. After about 50 years of medical intervention that has frequently gone badly wrong, and a long list of "This is the new way" solutions often ending in tears for the individual who was forcibly subjected to the "new way" (Dr. John Money being a prime example of that stupidity), you would have thought that these parent/doctor biased groups would have learned something? It seems they have learned nothing of the sort. They still look with glassy eyes at the concept of "ideal baby" and stop at nothing to ensure that is what they get. The Fundamentalist Christians have a term for it "Making a child into a commodity" and I would be sympathetic to that view, were it not for the fact that Christian fundamentalists seem to be the worst offenders in this respect. (Thoughts about planks and eyes spring to mind).
The truth is, investing in ever more invasive and potentially damaging "therapy" to ensure a child looks acceptable during the Sunday afternoon barbeque for the Stepford husbands and wives set makes me wonder whether the novel from which this article borrows its title is actually bordering on fact. Life mimics art. Well, that is a cosmic joke.
At the top of this repulsive hierarchy of infant manipulation, we find none other than Alice Dreger. (Who regards people of short stature as a "Cosmic joke", I imagine "Hermaphrodites" are a "Cosmic joke" as well. But then I regard 5 alpha carriers who are pool recursions that appear like a recurring nightmare to be a sick cosmic joke, but we cannot mention that). Both Dreger and her little clique of "Experts" at ISNA seem to regard intersex children (And children with other health issues) as "Cosmic jokes" unless they are dutifully normalized, preferably before birth and then controlled throughout childhood.
In fact there is no difference between this and what Dr John Money was doing in the 1960’s and 1970’s. If there is a difference, it is only by virtue of the medical technology being employed. If anything I would say that ISNA are worse than Money because Money did not advocate prenatal screening and elimination.
Let’s get back to the one "Taboo" that really does annoy me: the one where questioning Stepford parents is a big "no-no". (These are distinct from sensible parents). Stepford Parents want perfect children. Sensible parents are realistic about the child and realistic about how to give the child the best chances in life. Stepford parents fret about the potential sexuality and "orientation" and "Gender identity" of the child. Sensible parents consider things like the child’s good health and future prospects.
How brutally honest does this have to get? To me, deliberately trying to manipulate something like a future child’s sexuality, "orientation" and "Gender identity" is indicative of a trivial and cruel society, whose only real interests lie in appearances. And the most interesting thing is when teenage girls get breast implants or are driven to self imposed starvation to be "size zero" or when teenage boys pump up on steroids and go and kill someone. The Stepford set can be heard whining about the very things they cause.
But this is perhaps the reason why Parent/doctor biased "support groups" keep affected adults at a huge distance. They do not want to deal with consequences; they just want cute conforming children. And when they hit their teens, they are presented with sex stereotyping and expectations that are far worse than those faced by your average teenagers who, as we see, are far from immune from this insanity. But then Stepford parents live in cloud cuckoo land where the little waif like housewife making (perfect) babies and apple pies (Hiss hiss) and their macho husbands with gigantic muscles and super six packs (Grunt grunt) are the only people who cut it in Stepford. (Makes you wonder about what motivates anorexia and steroid abuse, doesn’t it?).
Here is the brutal truth, the very people claiming that "Family values" as the highest ideal are the very people turning society into an utter mess. It is hardly quantum mechanics, is it?
This is why I have many problems with groups like ISNA and SBTS. All they are concerned about is the sacred parent and the doctor who has all these bright and shiny new methods to ensure baby is perfect. And having been a victim of this insanity myself when I was a child, I really have no time for or care about brainless sex robots who wish to produce more sex robots and give no consideration for the longer term consequences.
Nor do I care about or have the time for the almighty guilt trip they try to impose. I am not going to change my opinion for the sake of some rutting season driven ethics that belongs in the jungle and not in civilized society. I do not buy into "Save babies" (With screening) websites that have all those cute little oxytocin inducing faces. Do you want to know why? Because when I was a child, the behavior associated with oxytocin (Maternal instinct) was beaten out of me (Didn’t fit the specific stereotype that was dictated at the time).
All that site has done is remind me, painfully of the rank insanity they represent. Cute babies do not wash, the "Screening" bit is the bit I noticed. Let’s see it for what it really is. And be honest for a change.
