Who is in control of the DSD Movement?
The main activist organisation and the principal spokeswoman for people living with a disorder of sex development are not a group of people made up primarily of those affected by this disorder. This is cause for alarm. This brief essay is a wake-up call.
The main activist organisation which controls the DSD movement is ISNA. If you look closely at its two boards, you will realise that this organisation in not controlled by people with a DSD. It is run by doctors and parents. I would ask if they really understand what it is like to be born with a DSD and to live with one. I would ask if they really have the best interest of those of us who are living with this disorder at heart.
ISNA’s board of directors has 6 members. The person at the head of the list on their roster is Arlene Baratz, M.D., who is a medical doctor and a mother of a child with a DSD. This reveals a lot about the overall focus and control of the group which is a doctor/parent controlled disability/birth defect oriented organisation. However, the larger board which comprises ISNA is the Medical Advisory Board which had 26 members in 2006.
I feel it is my moral duty to point out that ISNA has become an organisation which appears incompatible with the very admirable goals it once worked towards: to end shame, secrecy and unwanted genital surgeries on children born with intersex conditions.
What has happened is that ISNA has become a disability-related organisation (yes, a DSD is a disability and it is now being defined as a genetic birth defect, thanks to some of ISNA’s board members such as Eric Vilain, to mention one of the principal architects of the redefinition of intersex as a genetic disorder) which is not run by people who are affected by the particular disability (or disorder). ISNA is clearly focused on prevention and care, and unfortunately, elimination of “disordered” bodies. ISNA is not speaking for people with a disorder of sex development; it is speaking about how to MANAGE us and eliminate bodies that society views as less desirable or “abnormal”. For example, Dr. Eric Vilain, an ISNA board member and genetics expert, stated recently when talking about intersex: “I'm calling it a disorder because I want all the rules and the wisdom of modern medical practices to be applied to the intersex field. … And that's much more scientific, it's much more individualized, if you will. It's much more medical.” He goes on to state: “So basically my point of view is really, let's separate the political from the medical, the science.” [All quotes from: “When a Person Is Neither XX nor XY: A Q&A with Geneticist Eric Vilain”, Scientific American]
I wish that Eric Vilain were being honest when he says he wants to separate the political from the medical but he and ISNA have done just the opposite. Their new glossy publications are entitled: The Clinical Guidelines for the Management of Disorders of Sex Development in Childhood and Handbook for Parents. There is nothing for people living with a disorder of sex development offered by the Dreger/ISNA consortium. One publication is written for doctors on how to manage our bodies and the other is written for parents. Somewhere the politics of this organisation excluded the voice and input of the very people it supposedly is advocating for. The politics is obvious. It is about controlling us, managing us, pathologising our bodies and our identities and marginalising us politically.
These publications written by Alice Dreger are political statements and they are not about liberating people with disorders of sex development, they are about eliminating our gender variance and assimilating us, often after having mutilated and chemically changed our bodies without our consent, into a society which cannot accept our “disability”.
The position of Alice Dreger in the intersex/DSD movement is problematic and also representative of the politics that has been used to control and marginalise those of us living with a DSD. She is not affected by this disorder personally and she has been very vocal and supportive of abortion rights. Pro-choice advocates such as Monica Casper who was put in charge of ISNA after Dreger and her husband were both on the board and in control of much of ISNA’s policy sent a signal to many of us with DSD’s that was not at all ambiguous. Many of us asked: “How can a woman who is not affected by a disorder of sex development control a movement of people who for the most part will never have the choice to become a parent? How can a woman such as Monica Casper, whose main activism was the right of a woman to choose, understand that this right to choose which babies to have cannot be the central issue of the people who are being screened out of the population by pre-natal testing?”
Alice Dreger, a proud parent and professor at a medical school and whose husband is a medical doctor has told us that we should spend our time speaking to those with real power: the parents and doctors. Yes, we agree that they have the real power and they have that power because of ISNA and Dreger.
I agree with Sophie Siedlberg who wrote: “I would like to see the freak shows, the pathologising, the demeaning commentary, the attacking of dissenters, the malignant indifference and arrogance stop.” I concur. I want control of my body. I want control of my gender and my self.
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)
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.
"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."
