I am starting this thread in response to the posts of Miriam and Jules in the "SF Human Rights Commission Announcement" tread. I believe that they have brought up important questions, but that it would be best to take up the issues that they brought up in an independant thread. So... here are my remarks:

Hi Miriam and Jules:

Thanks for your comments. I checked the ISNA website and found the following in the FAQ section:

Frequency Chart For Intersex

You can click on the "Frequency Chart For Intersex" above to see the material. The chart maintains that the total number of people receiving surgery to "normalize" genital appearance at between 1 to 2 in 1,000.

A big problem is that hypospadias treatment is a large majority of genital surgeries. (At 1.8 per 1,000, or surgery in 1 per 555 births). If one removes hypospadias from the picture, the rate of genital surgery drops dramatically.

There is the same problem with Klienfelter's syndrome. I do not have Klienfelter's syndrome, but a close friend does, so I tend to include Klienfelter's syndrome as an intersex condition. At 1 in 1,300 (7.6 per 10,000) according to Miriam, it alone greatly increases the prevance of intersex conditions. Also, XYY at 1 in 1,100 (9.1 per 10,000), XXX at 1 in 2,000 (5.0 per 10,000), single X at 1 in 2,700 (3.7 per 10,000), and XXYY at 1 in 6,500 (1.5 per 10,000) greatly increase the number of intersex people from a genetic perspective. Just counting these genetic conditions leads to a combined genetic total of 26.9 per 10,000, or roughly 1 in 370 births. My thanks to Dr. Joan Roughgarden's new book, "Evolution's Rainbow" for this information.

I agree with Jules and Miriam that non-hypospadias conditions requiring infant genital surgery are probably fairly rare. Classic CAH at 1 in 17,000 (5.9 per 100,000). Complete AIS originally classified as male 1 in 40,000 (2.5 per 100,000). Complete AIS originally classified as female 1 in 8,000 births (12.5 per 100,000) "true" hermaphrodite 1 in 85,000 (1.1 per 100,000). If one estimates that 5-ARD may well have a frequency of 1 in 40,000, in line with AIS originally classified as male, then its frequency would be about 2.5 per 100,000. For genetic reasons, conditions that have frequencies of under 1 per 100,000 start running into big problems. So combining these conditions, which form a restricted subset on all people born intersex gives a rate of 24.5 per 100,000.

So, at the end of my argument, I believe that non-hypospadias intersex conditions that might require surgery in the current paradigm occur at a rate of roughly 1 in 4,000 births.

However, when all is said and done, I still believe that what is intersex is open to a wide variety of interpretation. There is part of my ego that would be satisfied to belong to a select small group of intersex people who had infant genital surgery not related to hypospadias, and that intersex is rare. Yet denying intersex status to people who are neither XX nor XY, and people who have had hypospadias surgery would be a big mistake in my mind.


Peter

Because CAH has different degrees and has different types, not all of us fit into the definition of Intersex being born with genitals that aren't standard male or female but rather ambiguous. To include everyone that has CAH into intersex is inflating the population.

Men with Classical Adrenal Hyperplasia (Salt Wasting or Simple Virilizing, 11- Hydroxylase or 21- Hydroxylase deficiency) do not fit into the definition of intersex. Their genitals do not send up a red flags of questions. They only have male chromosomes and male organs. If it wasn't for the new born screening blood tests many boys with CAH would die from the lack of cortisol that is now given in med form. One lady told me that a lot of boy babies that died from what was believed to be SIDS (Sudden Infant Death Syndrome) were actually babies that had CAH and died from an adrenal crisis. Male babies with CAH 17-hydroxylase are a different senario, they are rasied female because externally they look female. CAH 17-hydroxylase is very rare and I believe accounts for 3% of CAH cases from what I've been told.

The ambiguous genitals for girls ranges on a scale. Some girls with CAH don't look any different than other girls with standard clitorises and vaginal openings. More are born with enlarged clitorises which may or may not have a smaller vaginal openings that makes passing menstrual blood or heterosexual intercourse difficult and then there are girls like me where externally they weren't sure what the heck I was. I either had an under developed penis or a clitoris with a uro- genital tract that wanted to morph into a penis and completely fused where a labia should of been to open into the vagina that was high and on the inside according to the ultrasound and the other tests were done that found only female chromosomes and only female internal organs with no testes. The surgery sucked but it needed to be done at least by the time I was eight to make sure everything was healed and in working order for menstrual flow at age 11. I'm glad that at least it was held off until age five because then it was evident that I did lean toward the female gender. What is externally between your legs doesn't decide gender but rather your brain does. I'm glad that nobody forced me into one gender or the other and really only part of the surgery that I had does suck. A clitorectomy didn't make things better but the vaginoplasty was pretty darn good. Even as a five year old and I wasn't upset by this but knew that something needed to be done. I'm not a big fan of infant genital surgery and I'm very glad that my parents and that teaching hospital had the child psych. department there find out that at age three I was fine with how I was born and it was OK to wait a couple of years for the surgery. As much as I dislike part of the surgery that was done to me, I ALSO understand the need for it. "Time takes you by the hand and directs you where to go" Identifying as a little girl but having something that looks like an under developed penis, a decision has to be made somewhere and at a favorable time in my life. For me age five was the right time and none of this is easy but I remember what one medical person said,"Surgery makes this less of a fall..." and as much as I don't like it not having surgery in my case would of made things much worse for me and instead of being a prized lab rat for the medical establishment I would be a prized lab rat for the gender theorists. Still a freak, I mean an interesting case for a different group. I'll go with the white coats, the cheese is better. Although, the surgery wasn't perfect and I do get angry at times, the reality is that the surgery made the quality of my life better and I'M ALSO thankfull to the man that invented the cortisones that makes up for the cortisol that my body wasn't born producing because not only does it suppress the excessive male androgens but also helps to keep me alive in times of physical stress such as an illness or operation.

When I see in articles that CAH is an Intersex condition. Well, that is true but not for everyone with CAH and they are the lucky ones.

Anyway, I enjoy reading all the posts and it's great that you all got to share your stories.

AIMEE

A scalpel cutting your genitals hurts wether you have intersex status or not.

I think a discussion about which *conditions* should be IS-conditions or not, is missing the point. There are always cases, where no cause for an abnormal reproductive system can be found. Disorders like Prader-Willis or Kallmanns-Syndrome are rarely mentioned in statistics about IS, and there are many more.

I also think it would be hurtful for someone with hypospadias to be told, that hypospadias is not an IS-condition just because it's more frequent than other conditions.

Hi all,

The definition of intersex matters. To be a member of our secret club you have to be born with a body that unites aspects of both the male and the female sex. That is how the medical profession thinks about it and I agree with them.

The way Sofie has put it would mean that transsexuality is an intersex condition (because that would be one of the cases where no cause for an abnormal reproductive system can be found).

The Kallmann Syndrome is not recognized as an intersex condition (at least not by the majority of the medics) because of two reasons. 1) when treated the right way you will get normal boys and girls and 2) even when a boy has a small penis it still is a boy with a male genderidentity, a penis, two testes, XY-chromosomes: there are no aspects of both the male and the female sex.

The same is true for a lot of people with CAH, hypospadia and even Klinefelter. They don’t fit into the definition of intersex and, more important, they don’t want to be included in the ‘intersex community’. Especially parents of very young CAH girls will tell you their daughters are not intersexed. It would be completely wrong to classify people as intersex when they don’t want to be included in our secret club.

Besides, widening the definition of intersex will distract focus from what it really means to be intersex. To me intersex is not (just)about scalpels or no scalpels. It is not (just) about ambiguous or unambiguous genitals. Intersex is about shame and secrecy. Poking, peeking, and prodding… being photographed without knowing why... Now I know that a lot of people in the medical profession knew exactly what was ‘wrong’ with my body. Now I know why the doctor was so interested in my abdomen. But when I was a child I did not know and that makes me feel very sad.

Groeten, Miriam

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The Truth, The Whole Truth, and Nothing But The Truth.

Hi Sofie and Miriam,

I am very tired now, but I would like to suggest a couple of things to think about.

Bodies Like Ours is the world's largest non-condition specific support forum for intersex people and our allies. As such, I believe that it has a somewhat different role in the world than condition specific support forums. In addressing the frequency of various intersex conditions, I am sorry that I apparently hurt Sofie. There are several people on this forum who had childhood surgeries for hypospadias. Their childhood physical pain and psychological trauma was probably very great. I believe that Bodies Like Ours should be an inclusive umbrella, where anyone with "atypical genitalia" can come for support. I have noticed that the term "ambiguous genitalia" is now often replacing "atypical genitalia". It seems that "ambiguous genitalia" is becoming a more restrictive term than "atypical genitalia".

I think that a sign of the growing maturity of the intersex movement is that not every organization has to follow the same path, but that we can still work together. For instance, ISNA is now pursuing a somewhat different path than Bodies Like Ours and the Intersex Initiative. That is a good development. I believe that Bodies Like Ours should be a broadly inclusive umbrella. I also believe that infant genital surgeries should remain a major focus of Bodies Like Ours for many of the reasons that Miriam gave.

While, I would not discourage serious discussions of intersex issues, I will try to do my best to discuss topics in a way that does not hurt others. I have always found Sofie's remarks to be both thoughtful and positive.

Peter

In the analysis I did almost two years ago (!), I tried to pull together how-common-is-it numbers from several different sources, including ISNA and some medical references. Be aware that numbers differ wildly from one source to the next, so I wouldn't bet a proverbial farm on any of them. I also found it interesting that different sources cited different conditions as being intersex; as we've seen in this thread, there are several perspectives.

For you relative newcomers, my analysis is at:
http://users.snip.net/~gbooker/is.zip

Glenn

Your mail box is full!! delete a few messages so I can sent you a Pm please.........:D

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You really have to love yourself, to get anything done in this world!

Julanne

Done. Sorry about that.

Peter

I have reviewed Glens review of the literature several times now. I am not sure what anomoly/syndrome I was born with and clearly don't rememebr what my gentials looked like as a child but I was hospitalized for numerous surgeries between 2 and 4, 14, 18 etc. I remember meeting John Money on a trip to Baltimore and he thought being a girl would be best but my parents were reluctant after all I was their son, the genetic tests proved it to them and the surgeons disagreed with Joh Money's premis that you can change genders with no ill effects. In fact, Very wrong in some cases as David Reimer proved.
I really only liked one doctor and he was a urologist that I believed repaired a hypospadias which was the least of my problems but it kept me from getting recurring UTIs which immesly changed the quality of my life. I am in my early thirties and never heard the term intersexed until a few years ago. I thought not me becuase I am male but I definately have nontraditional male genitalia. A surgical experiment as I see it. I am not comfortable being called intersexed. It makes me feel like a freak when I so try to fit in as a man. It impacts my relationship with my girlfriend. A relatiosnhip I never though possible. I would hate to exclude anyone that feels they belong to our group. When I found this website I was thrilled to have others with similar poblems to talk with. I can understand everyones point of view. At least here we are kind and understanding. That can't change.
David