[RGMCjim]

Dana,
There really never were any guidelines for establishing intersex conditions because it really wasn't/isn't a diagnostic term. It was a blanket description for people who by whatever cause had some physical feature or features that made them not exactly male or female, or kinda both. So a person who is XXY might only have no internal or external intersex feature other than his karyotype and is still called "intersexed." I met a man like this. Or, a person with XXY might start life phenotypically male and yet gradually femminize over his life time, steadily becoming more androgen resistant and slowly feel like he is more female than male. I know a man like that too. These are just examples. The point is, our dianoses were Klinefelter's syndrome, or CAH, or genetic mosaisism, NOT intersex. Intersex is a neutral describer that caught on more with intersexed people than the medical profession. The beginning of a social identity for people with intersex conditions is still very new.
I believe intersex, as a term, was introduced to the medical profession by John Money. I know the first time I heard it associated with myself was in 1972 or 73 when I was sent to Buffalo Chirldren's Hosp. austensibly for hormone therapy to start puberty. The term didn't didn't really catch on outside the "gender clinic" circles. Many, many intersexed people online have stated that whenever they tell a Doctor they are intersexed, (my experience too), they aren't sure what we mean and we have to explain it. Often they have no clue what our diagnoses mean either and have to look it up. This is why being "out" as intersexed is so important to us recieving quality health care. The secrecy, shame and lies things has kept our doctors in the dark as to our possible health care needs. That's been changing since we've become more vocal and visible - not as a result of it being perveyed by the Medical profession itself. Really, the term intersex was claimed by us with the original work done by intersexed activists that formed ISNA.
A great deal of the medical professions treatment of us had nothing to do with our health care needs. It had to do with managing the "social emergancy" that was percieved if a baby had ambiguous genitals and/or mixed organs. The focus was on covering up our genital ambiguity and seeing to it that we didn't have fertility that didn't match our gender of rearing. This was done without serious concern for sensativity, function, continence, or emotional trauma. It also had a lot to do with sensationalism over the idea that a person's gender and sex could be assigned rather than it is something that emerges.
Where does all this leave us? Well, I need a damned word for what I am. I spent the first 40 years of life without one. I was a "partially formed male", or a "pseudo-hermaphrodite", all apologies for not being male enough or female enough. That's what the term "intersex" gave me - a legit sex! I could finally say, I'm an intersexed man. I didn't have to say, "I'm a man but..." It gave me a people. I wasn't all alone anymore. There were other intersexed people. It gave me something else of supreme imortance. It gave me a way to talk about myself and people like me to other people. I could tell our stories, our struggles, our persecution and make allies for change in the way we're treated in society and by the medical profession today. It did the same for others, like Betsy Driver who designed this site and has accomplished wonderful things for OUR PEOPLE. How's that feel? OUR PEOPLE. There really is an OUR PEOPLE with organizations of intersexed people with every kind and degree of intersex condition all over the world all beginning to connect and do good work for ourselves.
Next week David Cameron is covering the concerns of the intersexed at a Health Summit in Philadelphia. Last fall he did one in San Francisco. I'm giving a college lecture next week, and 2 weeks ago covered intersex issues for a speakers bureau so that they can add the topic to a list of sensativity training issues they educate people on from the police to school teachers, to industry.
We have so much to feel good about. But so much work to do. There is a new organization (I'll post the website -gotta look it up) that is concentrating on the legal problems of the intersexed. Our legal issues are getting worse every year, especially in the U.S.

Jim