CARES Foundation: “Surgery consideration for girls with classical CAH”
We encourage parents and society to appreciate intersex people, rather than treat us as problems to be fixed.
We note that CARES denies the existence of male-identified CAH people, and plentiful statistics that show a low birth-rate, low marriage rate and high rates of “same sex attraction” among CAH “females.”
So you have just been told that your baby girl has a genetic disorder called Classical Congenital Adrenal Hyperplasia. You are scared, confused, and upset. Aside from the medical aspects of the disease (adrenal crisis), the need for medication and careful medical monitoring for the rest of her life, you are now confronted with the decision of what to do with her genitals. They don’t necessarily look like your idea of what a normal female should look like. Should your daughter undergo reconstructive genital surgery? …
Secrecy and Shame
When adult women with CAH look back at their childhood experience, many of them report that their most painful memories revolve around a sense of secrecy and shame. Some of these women did not even know they had undergone genital surgery until they were well into adulthood. In the past, parents were often encouraged by their doctors not to discuss genital differences or surgery, to discourage questions by the child, and to keep the situation secret from extended family members. This practice stemmed from an unproven belief that focusing on genital differences might lead to ambivalence on the part of the child (or even parent) and might eventually result in an unstable gender identity.
Though perhaps well intentioned at the time, the policy was ultimately damaging-in some cases disastrous. Secrecy did not eliminate conflict or anxiety in the child; it fanned it. Children have radar for lies and deception. Silence is interpreted as shame. In the absence of light, children will invent scenarios far worse than the truth.
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Sadly, you are quite misinformed about people with CAH and their desires, needs and lifestyles. Before making broad comments, perhaps you should take the time to get to know more of us. We live our lives, not really thinking much about our disorder and really not that concerned about the results of our surgeries. While any surgery is not ideal, I am so happy that my parents chose early surgery for me so that I could live my relatively normal, and happy life. I am heterosexual, married, and have a child. I am not a ******* – nor are the majority of women with CAH as the studies have shown time and time again. You love to distort information to meet your own agenda.
XX children affected by CAH who receive regular treatment of their CAH from childhood are very different from people who do not as in 3rd world countries. Those people may, if they live past childhood, identify as males. Quality treatment and quality and open parenting makes all the difference in how we develop and live our lives. The CARES site is not really directed at people in the 3rd world. Frankly, CARES has been a wonderful support for me.
OII has many intersex members who have CAH. Your experience is a lucky one.
We do take the time to get to know CAH individuals – they are on our board in five countries. While you and your friends might live disordered lives you don’t think about too much, many CAH individuals do not see the differences as disorders and do not think they deserved to be cut in order to “disappear” those differences.
You are heterosexual, married and have a child… well bully for you! Many CAH individuals are not heterosexual, are infertile and are forbidden by law from marrying their partner. Thanks for reminding us of your white, middle-class privilege though.
Your statistical certainty seems to fly in the face of the research of Sheri Berenbaum and if you are correct then why is Maria New recommending anti-lesbian (you can say it here so no need for asterisks) drugs that impair mental capacity in order to prevent a possible lesbian baby.
When quality medical treatment includes non-consensual surgery, the administration of anti-lesbian drugs and the abandonment of any semblance of respect for the rights of the child, you can keep it. Give me third world neglect any day.
As Drs Minto and Creighton say, intersex infants who are spared surgery fare as well if not better than those who are subjected to it.
CAH drugs are for salt wasting and stress – they are not for sex binary reinforcement. The drugs and surgery used for that are a homophobic response to difference just as your little row of asterisks are.
When your choice of surgery denies others their choice of surgery then you must forgo your choice. Wait until all children are old enough to give their consent to cosmetic surgery.
According to the Oxford textbook on Endocrinology fewer than 40 classic CAH women have become pregnant. Abnormal vaginas and lack of interest in males seems to be the problem.
CAH women have enhanced spatial ability that will be lost with prenatal dexamethasone.
CAH women may prefer IVF as a means of reproduction.