"Intersex-ual" ?

[Sophie338]

Hi All :)

I was called "An intersexual" by a medic today.
It was a word that made me feel revolting, I dont mind being refered to as someone who is intersexed. Or having a specific condition but "intersexual" ?

Does anyone else feel uncomfortable with that term?

Hugs :)

Sophie.

[Dana Gold]

Tell this medic:

Thank you, Doctor, for your assistance today. It's nice to know that some normo-sexuals as yourself actually know of people like me.

I hate all labels ending in -sexual. :confused:

[Sophie338]

Hi Dana :)

Thank you, Doctor, for your assistance today. It's nice to know that some normo-sexuals as yourself actually know of people like me.

Well I suspect I was slightly less polite. Sort of went along the lines of

"Are you bothered about what you think I get up to in bed or my health?"

They apologised, but I really felt like I had not felt for some time now. That insidious sense of medical dehumanisation that is often bourne on a single term. I have seen it written in a number of places, often the body of the text being quite up to date, describing these conditions in sane and human terms but the heading "intersexual" I just cannot stomach that.

As you say anything that ends n "Sexual" it just feels horrid.

All the best

Hugs :)

Sophie.

[Betsy]

It's what Time magazine did as well http://www.bodieslikeours.org/forums/showthread.php?s=&threadid=641&highlight=Time

I see it as seeing intersex as a behavior or how someone expresses themselves which it isn't at all. As dana has done, I've retorted with calling someone a femalesxual or malesexual but I like her term better---monosexual.

betsy

[ptrinkl108]

Hi Sophie,

When I think of the term "intersexual", what comes to my mind are doctors and the lyrics of an old Reggae song:

"All over America, People keep on asking me for Funky Kingston, but I ain't got none, someone took it away from me."


Peter

[Jules]

In my medical records, I’m called ‘pseudo-hermaphrodite.’ In

several hundred pages not once is ‘intersex’ used to describe me.

It is a very new word. Before there ever was an intersex

movement this term was never used. We can’t have it both ways

Sophie. We want to be noticed. We want to educate others

about our conditions. There will always be variations of terms

used to describe something. Let’s stop being so petty about it.

Once upon a time, people who had sex with people of the same

sex were called gay. Now they are called homosexuals, lesbians,

faggots, queers and dikes, and guess what, they are only labels.

People choose to call themselves what feels right for them. If

you don’t like to be called intersexual, just say nicely, “I would

like to be called intersexed please”. Let the drama go.

:rolleyes:

If somebody calls your apple an orange and you’re choosing to

get all bent out of shape over it, then you are the one who feels

it—the other guy usually only feels stunned that you are so

angry. – Since most ‘normo-sexual’ people don’t think up terms

for intersexed (‘ –‘?) people, it’s not as if the medic called you

that to offend you – he probably had no idea that some people

find the term intersexual pejorative. He was probably trying to be

kind and thoughtful by not called you “miss- pseudo-

hermaphrodite”, and then, your anger over a little ‘word’ just

gives all of us a bad image. Maybe you were angry at something

else and are just projecting it on something rather trivial.

Remember as often as you can: educate, educate, educate— but

do it nicely. Sharing your feelings positively (without the drama)

will work wonders in your relationships with medical personnel.

(Which could end up long term). Please don’t take my advice the

wrong way, you can feel anyway you want, it is how you show

your feeling that matters.;)

[Sophie338]

Hello Jules. :)

I see your point, I just feel a bit backed into a corner again by the word. As Betsy points out words that end with "Sexual" tend to refer to behaviour in some form or another. I think this term is as bad as these older terms like "Pseudo-hepraphrodite"

Not only that do you think certain religious extremeists are going to lose any argument, if all they have to do is cite the word "sexual". To them that is a keyword for "kill" if the word "hetero" is not in front of it.

For me personally, and I do speak for myself only here. I am not sexually active, never will be. So I personally dislike any refference to me with "sexual" on the end of it.

I am not out to be rude to medics either, when I said what I said, it basically just came out. the term "intersexed" does not have the same baggage "intersexual" does.

Others may have a different viewpoint, it is just that for me that word is hard to deal with.

Why does society have to use all this nomenclature in any case?



Hugs :)

Sophie.

[Dana Gold]

Well, I have to say that Jules makes a lot of sense. Given that the medic did apologize afterwards, is an indication of an honest mistake, rather than a purposeful snide remark. And yes, drama, is best avoided, since it would only add to the confusion and emotionality of the situation.

However, I also understand Sophie's feelings. As all of us, as human beings, do not wish to be misunderstood or construed to be something we're not, especially in some of society's view that to be intersexed is perhaps primarily a sexual issue (i.e. homosexual, bisexual or otherwise). That notion, if existent, needs to be "corrected" (or educated, as Jules so wisely pointed out), albeit in a polite way, if possible.

The reality also is that there are ignorant (homophobic) doctors who actually may address one with "back-handed" remarks. I have personally experienced such, and it is more than just a "slap-in-the face".....it hurts. In such a case, it may be worse to counter with a "normo-centric" remark.......BUT, by God, it feels damn good to stand up for oneself in that way.

Anyway, that my feel on the issue. Jules is right it is important to not add drama since the medic or personell involved may misunderstand further........ but we're human beings, and we can't keep all of our emotions in check all the time. You can only , to use a metaphor, feed a dog a bowl of sh*t so many times and the dog will eventually "turn" which is only natural. And. Jules, please understand that some BLO members have not been as fortunate as you in having well-meaning, compassionate medical personell.

Finally, in extreme cases, it is perhaps best just to shove the "bowl" back to the "server" and simply walk away without saying anything.

PS: quote: "mono-sexual"......heh, heh, I like that......" I say, dear sir (madam), would a rather unknowing mono-sexual, such as yourself, please refer to me in the context of having an intersexed medical condition instead of being regarded as an "intersexual" which is offensive to me, as, most likely, the term mono-(normo) -sexual is to you as well."

....."a bloody intersexual, indeed!! .....fuh--kinell" :confused: :mad:

Dana, ever the (kindly:rolleyes: ) cynic:D

[Meresa]

Originally posted by Dana Gold

I hate all labels ending in -sexual. :confused:

Amen, sis. I do too. Good to know we're not alone here.

[Jules]

Sophie, I do understand that some slang does more harm then

others. Calling a colored person a n***er would be a good

example of what your talking about. Yet, I have heard many

blacks call themselves n***ers in jest!


The right to name yourself as a group is a POLITICAL statement

of strength and solidarity, does BLO have political strength? I want it to be.

It is unnecessary to have drama get political attention.

On the other hand, in the case of the medical personal, it more

often a case of ignorance then it is of malice. To presume malice

when there is only ignorance often provokes malice not only to

you, but also to other people with intersexed conditions whom

might go through the same doctor. Getting the political support of

doctors can be hard enough. If a doctor has to deal your with

anger as well as your condition it might make things harder on

you and intersex activists.


For me, it is just easier to say 'intersexual' then it is to spell


out "person with a intersexed condition". For some people it

might be not much more that.

Would we all not be happier going back to Hermaphrodite? Most

people have no idea the meaning of the word (Greek myth) never

mind pronouncing it. Even so, the numbers of (including

pseudo) hermaphrodites that get the genital operations that we

are trying to stop are higher then the intersex conditions

numbers.


Intersex includes a much higher number of people

and conditions. Some people do not even know they have

intersexed conditions until they are older adults. If you don’t use

the extremely narrow medical term of intersex, it makes the

numbers of surgerys vs intersex conditions much smaller then

using the word hermaphrodite!

So what we might argue the problem is the the word intersex!

After all, it ends in the word "sex!" :eek:

How can you have a problem with words ending in sexual or

sexed, but be bothered over a word that ends in sex? :rolleyes:


Dana, I have met some rude doctors, when my regular doctors

have been on vacation or on business I have seen other doctors.

I simply do not to go back to them.

One time, when I was a young child my doctor was not

around and A new doctor came to see me, with cameras

and a flock of interns behind him. My mother just about punched

this doctor in the face and threatened to never bring me back to

the hospital if I ever got treated like that again. Because I am

such a unique case, after that threat, my doctors made sure to

never put me in the hands of anybody else but themselves. I

think that a major issue that gets pushed aside is: how the

families that raise us, treat us. We spend much more time

with them then we ever do with doctors. Lets change there

minds?;)

[Dana Gold]

My apologies to you, Jules. I assumed that all of your doctors were kindly; of course you would have encountered rude, unkindly ones.

You, quite perceptively, may have hit the proverbial nail on the head by mentioning the word and/or suffix SEX. The word, by itself, does not carry a negative connotation (except, perhaps by puritanical people), but as Sophie pointed in another thread (TVC) it is when it is accompanied by prefixes of something other than hetero, or implies something other than "normal" primary and/or secondary sex characteristics ( oh, darn, the 's' word again:rolleyes: )

And some hate the word hermaphrodite because of its misuse ( the 'h' word )and implication of a mythical dual-sexed (darn!:rolleyes: ) "creature".

I am thinking and conclude that it seems to be up to each individual how they would prefer to be perceived and "connected with" a particular adjective or noun.


Finally, for me, I don't like either -sex or -sexual.....like Peter said, a 4-leaf (or even 5) clover is still a clover. In the medical world, though, such suffixes are bound to happen, and in the public, the ignorance abounds.

Alas, this normo-centric and genito-centric world and the imbedded socialized concept based upon those two is the real problem. Whether it's plain ignorance or outright rancor, it is perceived by some of the "served" as still being a bowl of sh*t.
That's because it would really be nice to be called/seen as Mr, Mrs, or Miss So-and-So, or by first name instead of: Ohhh, there goes the *****-sexual, or he/she is (it's) ***** -sexed We're human beings first and our anatomies/physiologies/sex lives do not justify our personas being labeled/connected with those things., especially when it is perceived as abnormal sex, sexed, and/or sexuality ( ohhhh...ohhhh, my ears are burning:eek: )

Language, semantics & "normalcy"......Sigh:(

[Betsy]

does BLO have political strength

I think after two+ years, we are starting to. Look at the Franken situation as an example. I also get asked many times about proper language and "intersexual" is one of the things I bring up. Look at the article done by Claudia Kolker---while I wasn't quoted in it (we talked the evening of my mom's funeral service so I wasn't really in the mood) we spoke at length about language and it's importance. The thing that impressed me the most about the Franken correction is they got the language right.

Jules, you are correct that "intersex" is a fairly new word. It's because it is a new word, that we can still change and mold it. Frankly, I don't like either intersex (because it focuses on sex) or hermaphrodite (because it implies the mythological two sets of genitals). I'm just at a loss to provide a replacement suggestion.

Betsy

[cougar9q]

I don't like the term "HeRm" that just offends me... I actually don't mind being called an intersexual...

What does deeply bother me, and probably shouldn't is when people hide the fact that they are intersexed. Yes that means that I am mad at myself. I am not trying to say that everyone should a little shirt with the term "intersexed," but I am terribly miserable and hurt when people don't acknowledge that they're intersexed or whatever word you wanna call us. Humm..... let me elaborate. To me I get offended when people get offended at me for talking about feelings concerning intersexuality. It's as if they are in denial that they are intersexed too.

To me it's as if I am being silenced. It is not a good thing to be silent. Anyway......


Monica

[ptrinkl108]

I know this might not be a popular sentiment about terminology, but I can accept the term "male pseudo-hermaphrodite". I don't really like the "pseudo" part, but given who I am, I can live with it. Although the term male pseudo-hermaphrodite is now discredited, it did have a certain specificity. Hermaphrodite is ok with me, because these days "intersex" and "intersexual" can refer to many things. I like that the term hermaphrodite still refers to someone born that way.

As I grow as an intersex person, I am aware of more intersex issues. Is the state of being a pre-op MTF transexual an intersex state as some people claim? I have been thinking about this question for days. It seems to me that FTM people are more honest about who they are. They seem to understand the issues better. Maybe I am old-fashioned, but I like people to be somewhat clear about where they are coming from. When does trying to be everything to everybody itself become a form of dishonesty? What are the ethics of honest gender-bending and transitioning?

I guess that I am rambling. Even if you call me "late for lunch", that will not change the fact that I am a male pseudo-hermaphrodite.

Peter

[Sophie338]

Hi :)

With me the issue has always been people imposing thier idea of what I should be rather than just being truthful and describing me as someone with a metabolic condition. simply because my genitalia were involved, all this sexualisation, be this or that gender and sex poltics got dragged into it.

The harsh reality was that I was a child with a condition that meant I was unable to metabolise a family of steroids.

I dont deny my being intersexed. I personally dislike all the terms that focus on sex. I agree with you Betsy on that 100% I just find the "Intersexual" bit really irksome.

Peter: on the thing you mention about Female to male transsexual. I admit I find that hard understand, mainly because this is not my personal expereince. I think it is interesting that if someone opts to be male they are given more legitimacy in some way.

That puts me in mind of the way IGM is described sometimes as well. If as a child you are subjected to a feminising procedure, that (Rightly) is considered to be doing harm. If the procedure is masculinising, it is not considered the same way. "It was a routine procedure and not harmful" (I have heard that once or twice). That bothers me because IGM is IGM, regardless of the intended sex. and yes some masculinising procedures are harmful.

I dont have a gendered axe to grind. I just find myself unable to deal with a bias that may or may not affect the right of the individual to control thier own body, whatever sex that bias may favour.

I tend to feel a lot of the terminology is indicative of things like that. People wanting to impose something on a child. "intersexual" imposes a status involving confused ideas about sexual orientation. That says little about a child with ambiguous genitalia. Male pseudo hermaphrodite and Female pseudo hermaphrodite seem to impose the notion that someone is a "Deformed member of a given sex". That is uncomfortable for me as it re-enfoces stigma and shame, and describes me as someone who should be "corrected".

There seems to be a hell of a lot of this gender politics behind the terminolgy they use. Me I am pretty much biased (Personally) in the direction of female. That does not mean i would insist that others with my condition should also follow suit. I know people with 5aRD who identify as male, it would be utterly wrong of me to say they should not do that. because it is thier lives and thier bodies.

I think when it comes to terminology there has to be some rethinking, if only to emphasis more the right to self determination and to eliminate pathologising. That from what I can see is at the root of all this. While I percieve a gender bias, some may well dissagree. But I think what many will be agreed upon is that much current terminology in principle does undermine the dignity of a person, and does imply an imposition of ideas upon a person that will at some point have an impact in thier right to self determination. Such as being a justification for IGM or being some gender bias.


With my own condition it was Imperatio Mc Ginley that bothered me with "They identify as male 100% of the time". They cant do that! it is not science and it is inhumane. Wether you identify with that sex or not, it still remains an external imposition on your identity if you have 5aRD. It also acts as a justification for IGM in a backhanded way.

Get rid of the shame, stigma and secresy and you get rif of the need for IGM, get rid of the idea that children must conform to one or the other sex. And again the justification for IGM goes.

And where IGM is not considered, the removal of terms like "Pseudo" and "Sexual", turns a "dark secret" into a day to day fact of life.

I feel that this is where the terminology is flawed.


Hugs :)

Sophie :)

[Sophie338]

Sorry to ramble on. :)

I think when it comes to terminology, people will apply a term to themselves which they feel suitable. With me the aversion to surgery and distrust of politics means I find a lot of terms uncomfortable. To me "intersex" and "intersexed" are the best of a bad lot in terms of wording. I wish someone would find a term everyone would agree on. but this (In a way thankfully) wont really happen because we are all unique and different from each other.

A term that may really upset me, has a more helpful meaning for someone else. I personally feel that education is more important, as this has more substance in terms of understanding than single terms or words.

I think what I really objected to with the medic was the context that word was used. The pronunciation had what I call the "Disgust hypen + hiss" in it. "Inter-ssexual". But a meaning to any word can be changed by the way the word is spoken.

Many hugs to you all :)

Sophie

[neko]

Peter: The problem with "male pseudohermaphrodite" is that the term has often been applied to conditions like AIS or Swyer syndrome, which is very misleading as such people are certainly not male in the usual sense of the word. While it might be accurate to apply the term to Klinefelter syndrome, I'm sure you will find many people with this condition who will vehemently deny that they are intersex (see the recent 'How Common Are Intersex Conditions?' discussion.)

Jules, you are absolutely right about the way our families treat us. I didn't have obviously ambiguous genitals at birth, but I did have some other health issues that my family was certainly aware of. The first time I inquired about having any sort of congenital abnormality, my mother told everyone what a 'stupid' thing I had asked her and then kept bugging me about it for months to see if I had given up on this 'crazy' idea yet. The "pretend it doesn't exist" approach goes way beyond ambiguous genitalia.

[Sophie338]

Hi Neko :)

I totally agree with you :)

Hugs

Sophie.

[ptrinkl108]

Thanks Sophie and Neko for your thoughts. The reason that I have been thinking so much about transgender issues and intersex is that I am wondering how far you can stretch the term "intersex" before it breaks. I understand that for many transgender people, transitioning is a great feeling, and that in the first few years of transitioning they often feel "euphoric". Some find "fluidity" very exciting. So, from those testimonies, and from my basic belief in the pursuit of happiness, I believe that transitioning must have a profound psychological benefit for many transgender people.

The problem I have is with the notion that there is an intersex continuum, and that hermaphorditic experience and transexual experience are on the same continuum. My understanding of intersex is along hermaphroditic lines where I grew up in the shadow of infant genital surgery and was rejected by other kids for my genital scars. I believe that growing up intersex should be central to what being intersex is. I know that this may seem reductionist, when the array of intersex conditions is like an alphabet soup. I also know that there are intersex people on this site who are also transgender. My sentiments are generally inclusive as can be seen from my other posts.

My problem is with communications breakdowns that can occur when talking with other people about being intersex, when you believe that you are talking with another intersex person of the hermaphroditic type, when they are really claiming another type of intersex identity. Recently, I have even been in one conversation, where a person who was neither transgender nor intersex, said that they were more intersex than any real intersex person. After days of thinking about one such communications breakdown, I realized that the other person's frame of reference did not really include people with ambiguous genitals as being intersex. Intersex was something else, perhaps a form of glamour.

Peter

[Sophie338]

Hello Peter :)

The problem I have is with the notion that there is an intersex continuum, and that hermaphorditic experience and transexual experience are on the same continuum. My understanding of intersex is along hermaphroditic lines where I grew up in the shadow of infant genital surgery and was rejected by other kids for my genital scars. I believe that growing up intersex should be central to what being intersex is. I know that this may seem reductionist, when the array of intersex conditions is like an alphabet soup. I also know that there are intersex people on this site who are also transgender. My sentiments are generally inclusive as can be seen from my other posts.

Thats an intersting point, I admit I have often tended to avoid references to sex, as with "intersex" because my immediate concern was the surgery that had been done to me, the reason why it was done, and what options were available to me to limit the damage.

Having done the best I can to reach some peace of mind about it
by getting the damage undone I have since taken the term on board because it does reasonably describe my condition at birth. And as a word, when an increasing number of people use it, there are generally notions about the things that have affected me.

With transgender, I personally have no problems with transgender people, unless they start saying I am transgender, a word which does not describe my expereince. (I had a conversation last year when someone did that).

I think people are able to apply terms that are approriate to themselves and thier expereinces.

But I have no idea what it is like to have say CAIS, CAH, Swyers or whatever. I only understand what it is like to be a 40 year old woman who has 5aRD and had a less than helpful experience of the medical profession.

Actually I think since this forum has been up and running, people must have come along with many and varied expereinces. It must be interesting to see how things appear now than they did say 8 years ago.

Intersting point :)

Many hugs :)

Sophie :)

[miriam]

Hi all,

Sex? It is a typical problem of the English language and of the people who speak that language. The ‘sex’ in intersex has nothing to do with sex (as in to f*ck). It is about sex (like in sex: f/m). In Dutch we use ‘seks’ for the f-thing and ‘sekse’ for the f/m-thing. So I have an ‘intersekse-aandoening’ (intersex-condition) which is not the same as an ‘interseksaandoening’ (which would be something like having problems between two sex moments).

If only people in the USA (and the UK?) would be a bit less afraid of speaking about sex (like as in to f*ck) it would be a lot easier to speak about intersex conditions.

And I’m not an intersexual. I’m a person with an intersex condition. I’m not a ‘male pseudo hermaphrodite’ because I’m not male (http://en.wikipedia.org/wiki/Male ), I’m not pseudo (http://en.wikipedia.org/wiki/Pseudo ) and I’m certainly not an hermaphrodite ( http://en.wikipedia.org/wiki/Hermaphrodite ).

I use the word intersex because I want to reclaim it from some transsexual people who use this word for their own condition. I recognize that IS is not better (as in easier to cope with or as in more accepted) than TS, but I don’t like it when some people make it even more difficult for us to explain to others what it means to be born with an intersex condition.

Transsexual people seek the help of a doctor to have their body changed, intersex people seek help to get rid of the doctor who has changed their body. That is, in short, the difference between IS and TS. Even when it turns out that TS has a biological reason, I think that TS people have a different history than we have.

Groeten, Miriam

[ptrinkl108]

Hi Miriam,

Thanks for the Dutch lesson. Is "seks" pronounced in a manner similar to the English "sex"? I have an "intersekse-aandoening". I will keep this in mind, in case I ever visit your country. I am still wondering what is the difference between "interseksaandoening" (which you described as being like having problems between two sex moments) and everyday life.

Personally, I would not call myself a male pseudo-hermaphrodite. I was only using the term to show that there have been other ways of describing some intersex conditions and to highlight some of the issues surrounding the use of terms like intersex. I am not advocating a return to a nomenclature which has rightly been assigned to the trash heap of history.

Peter

[Sophie338]

Hi Miriam :)

You dont mess with words :) I was nervous of saying it...



And I’m not an intersexual. I’m a person with an intersex condition. I’m not a ‘male pseudo hermaphrodite’ because I’m not male (http://en.wikipedia.org/wiki/Male ), I’m not pseudo (http://en.wikipedia.org/wiki/Pseudo ) and I’m certainly not an hermaphrodite ( http://en.wikipedia.org/wiki/Hermaphrodite ).

That is pretty much my sentiment, put bluntly, but like my sentiments.

I use the word intersex because I want to reclaim it from some transsexual people who use this word for their own condition. I recognize that IS is not better (as in easier to cope with or as in more accepted) than TS, but I don’t like it when some people make it even more difficult for us to explain to others what it means to be born with an intersex condition.

I am not so much into reclaiming words, But yes this thing about transsexual people swapping one term for another. And I have had a hell of a game trying to separate "intersex" and "transsexual" in some peoples minds. And I dont have any prejudices against transsexual people. But as you say, the confusion that arises does make explaining things very difficult.

BTW how areyou doing :)

Big Hug :)

Sophie.

[Betsy]

If only people in the USA (and the UK?) would be a bit less afraid of speaking about sex (like as in to f*ck) it would be a lot easier to speak about intersex conditions.

Isn't that the truth?

It's amazing how puritanical the US is about sex...when Janet Jackson showed her breast on teevee, you would have thought it was the end of civilization. It's downright comical. I also exploit it as well---if I get asked what I do and I either don't feel safe or don't feel like talking about it, I tell the asker that I am a sex educator. Rarely has anyone pursued a more thorough answer, instead they usually turn away beet faced. If they do pursue it, I reply I talk about healthy sexuality. It's a concept most don't seem to get.

Betsy

[ptrinkl108]

Can someone tell me what healthy sexuality is? I am in the dark. When I was in my twenties, I made many attempts to connect sexually with others. For me the big "O" was always the little "o". Even if my partner was having a good time, I was essentially feeling very little. As my sexual response was so limited, there was no basis for establishing a relationship. Too many power issues. I have often wondered if my situation was due to a hormonal problem. It also could have been due to psychological trauma asssociated with the initial painfully botched treatments of my deformed hip. In talking with others, I found that for other people most peak sexual experiences last only a few minutes.

I found myself, by my early thirties thinking, "Why bother?" In this world, on this plane of existance, the limitations are so great. In my thirties, I turned to music and meditation to try to find myself. After a few years, I was able to achieve states of bliss that would last for several hours. That was an improvement over my old situation, in that I found some happiness, but still, I was only going from one state of happiness to another state of happiness. I still felt acute suffering. But at least I had made an important discovery that there are tantric aspects of sexuality. I also tried heroin, but found that it was no better than music and meditation for getting high. Interestingly enough, it is only with some B/D people, who have a ritual understanding of pain, that I have been able to openly talk about tantric subjects. I also liked the Punk Rock attitude that a healthy sex life was a ideological joke for most people on this planet. In the quaint words of a United Nations report, billions of people are "aorgasmic".

I read many non-western religious texts in search for some answers. I finally found something of an answer in an ancient Jain text from India. It described different planes of existance, and how in the higher planes, above our world, that tantric energies become more and more intensified. The scales fell from my eyes, when I realized that my lack of a sex life was not an individual failing. I am not totally satisfied with the Jain answer, because ultimately I find it too repressive. I believe that just because things were seen in a certain way in the past, does not mean that they have to be that way in the future. Maybe, a hundred years from now, things will be different. Or maybe anti-depressants would help me?

Peter

[Sophie338]

Hi Peter :)

Can someone tell me what healthy sexuality is? I am in the dark. When I was in my twenties, I made many attempts to connect sexually with others. For me the big "O" was always the little "o". Even if my partner was having a good time, I was essentially feeling very little. As my sexual response was so limited, there was no basis for establishing a relationship. Too many power issues. I have often wondered if my situation was due to a hormonal problem. It also could have been due to psychological trauma asssociated with the initial painfully botched treatments of my deformed hip. In talking with others, I found that for other people most peak sexual experiences last only a few minutes.

I think I sort of know what that is like. Me I dont have orgasms, the damage they did to me as a kid excluded that possibility. The way I have come to terms with that is to concentrate on other things, My computing, campaigning and doing whatever work I can for the support groups. I strangly find freindships mean a lot to me, more so that relationships.

The way I dealt with is was not perfect, only a few years ago I was a nasty peice of work, driven by bitterness and anger. I think deep down there was a sense of resentment at "norm borns" looking down on me after they had done what they did to me as a kid. They seemed to make it worse by heaping all this morality and conformity on me.

In the end I started taking it out on people I really should not have been. Trolling, hacking, VXing, hassling people in shops, dishing it out at the slightest provocation.

I have since found that freindships and support are an invaluable thing. Hence my "Return from the abyss".

This started with a good freinf of mine who has CAH and I ended up at the AISSG, that helped a lot.

Admitted support does not take the pain away, but with me it made me feel more of a human being and gave me some self worth. I have never taken up religion or philosophy to get me through all this. Perhaps I should have done. It is interesting how different people find a way of dealing with different problems.

I still have the issue of my feeling angry at times to deal with, and as Miriam said, the feeling of not being understood because terms that are applied to me are bieng used by others to further thier own causes. When that happens I tend to feel as if I am being erased or redefined again.

It is though, the way we all deal with things, that seems to matter. And while I am far from perfect, like you I have found some means of dealing with it all.

I think supporting each other is really important because that way, we all get a chance to feel better about ourselves and make good freinds in the process.

As for a "healthy" sexuality, I cannot answer that, I just don't know. Personally I dont have a sexuality, so I the concept is alien to me, but I do value friendships above all else.

Hugs :)

Sophie.

[Dana Gold]

Healthy sexuality? Jim Costich in earlier posts once mentioned that healthy sexuality depends upon whether one has an accepting "partner" regardless if the sex is considered "normal" by contemporary or otherwise standards. Speaking for myself, I have no sex life, and for self-protection choose not to have one. I have not in the past responded in a "male" orgasmic way since it was (in comparison with hearing other males speak of it) merely like an urgent urination for me plus I have no sensation "there". My body/mind prefer penetration, however I don't have that and I doubt transsexual/vaginop[lasty surgery would ameliorate that. And I really don't like anal sex, even though I like , sexually, having something inside me...(when I have "done" myself, because sh*t gets in the way (literally). However lack of sex life, although, leaving one empty does not mean the end of life. So friendship and the pursuit of happiness in living freely (is that maybe a paradox?) as one deems appropriate for one's life becomes the paramount issue. And the achievement of such may be dependant upon self-esteem and , despite one's plight, the opportunity to make an sustain friendship. Human beings both desire and need to feel part of the world; when that is denied or taken away, then alienation and self-deprecation become the "guiding darkness" exacerbating an already unhappy life. It is even more difficult when one's physical and/or psychological sex is denied or taken away (as many here on BLO have suffered) to achieve a sense of wholeness and live life "normally". My thoughts go back to a movie entitled "The Elephant Man" I once saw about the real and actual life of one John Merrick, born whole body disfigured, yet with an intelligent mind and kind heart. His only redemption was a compassionate doctor who befriended him and took him into the family household.

I am not going to make any discussion on intersex because it is evident to me (by contemporary, group- agreed upon standards) that having a "Klinefelter-like" syndrome is not really a hermaphroditic-related intersex condition; and I am therefore not anymore qualified to speak on behalf of any such related issues.
I would, however, like to reply to the following excerpt quoted by Peter from another person:

"Intersex was something else, perhaps a form of glamour".

That statement or ideation is totally absurd and reflects a rather deep ignorance (either by default or as a "slap-in-the face); being body-variant, whether intersex or not is NOT a "happy adventure" into the world of humankind. Miriam made a rather astute observation that the inabily or unwillingness to openly talk about sexual issues in this society breeds ignorance, stupidity, and exclusion. The "enemies" of all "non-normals" are the ones who have conceived and perpetuated the ideology of a natural psychological and /or physical sex life being one that is solely prescribed by doctrine, rather than by nature's reality.

I am a Buddhist; as such I believe that happiness comes from within; to depend upon it from others is already a lost cause, especially when the majority of the environment deems one abnormal and not fit and qualified to be a natural part of it. As a reference, I believe Jules has realized this and applies it on a daily basis to her life; perhaps we could all learn from such a life example. I am not a good example, since I still grapple with psychological issues stemming from many past events of physical, sexual, and psychological abuse. (which is why I fear romantic involvement and avoid "societal triggers" that focus upon me as an "other")....therefore I still need to substantiate myself and it seems I am finally making a concrete small victory exemplified by my quote at the bottom of this post. I wish to emphasize, however, that despite my "problems" I am not sick in the head, for I ahve been evaluated by a psychiatrist and found to be "normal".....just having depression, panic-anxiety condition from something like post-traumatic stress which in this wretched world is probably a normal (paradoxically) thing given the many inhuman and cruel things that occur daily on our planet, even within the realm of a democratic and human-rights advocating society yet glorifying war and declaring denouncement of "sexual deviants" with exclusionary religion dogma as the banner of truth.

I ahve learned a lot by being part of BLO and wish to thank everyone for their patience (with my past rants and "hysterical-based" posts) and reciprocal communication. We all need to find our own path in life and dedicate ourselves to our own happiness. Without that inner "established" self, we are perhaps at the mercy of other's views and actions, wandering and wondering.....in sometimes desperate attempts to find the "answer" and sinking into despair and anger when none is in sight or obscured by secrecy and "walls".

Take care, peace to all.

[claraJane]

Dear Dana,

You said...

"I am not going to make any discussion on intersex because it is evident to me (by contemporary, group- agreed upon standards) that having a "Klinefelter-like" syndrome is not really a hermaphroditic-related intersex condition"

Who really is an expert on someone else's life, feelings, or experiences? And yet, you have things to share, neh? You are not so alien here as you might be elsewhere. While our medical conditions and our experiences differ, we can yet learn from each other.

Thanks for your continued posts,
cjs

[Sofie]

I am not going to make any discussion on intersex because it is evident to me (by contemporary, group- agreed upon standards) that having a "Klinefelter-like" syndrome is not really a hermaphroditic-related intersex condition; and I am therefore not anymore qualified to speak on behalf of any such related issues.


Dana, although some people with Klinefelters and other conditions don't identify as IS, doesn't mean it's not an IS condition. The definition for an IS-condition is (from IPDX) Technically, intersex is defined as "congenital anomaly of the reproductive and sexual system." Intersex people are born with external genitalia, internal reproductive organs, and/or endocrine system that are different from most other people.

And BLO is Peer support and information for people born with a body that is different.

Sofie

PS Peter, what are B/D people?

[Jules]

Warning! Adult content.

Healthy sex starts with a healthy relationship. I lust for blonde

hair, blue eyes but that does not mean that I would be better off

in a relationship with a blond hair, blue eyed girl. I don’t get

along with them.

On the other hand, if you start a relationship, and you

keep the main focus off sex for the first year, you can develop

wonderful feelings for your partner that, in the future, allows you

to be much more comfortable expanding on what your sexual

fantasies are and fulfilling them.

Now throw in intersex, and other types of handicaps and yes, it

does get more complicated. (Please, don’t think that I think that

intersexed conditions are handicaps!) The funny thing is, If our

unique bodies do not bother us, they won’t bother our partners

either. In fact they may love us more because we are not like

everybody else.


Good sex starts with masturbation. You don’t need to climax

during masturbation for it to be healthy. Just touching and

viewing and being comfortable with your own body is a starting

point. If you’re masturbating, then you do have a sex life, you

are just playing solitaire. :p

There are three ways to think about sexuality.

People are kinesthetic, auditory, or visual. Of course

you can be all three, but one is always first. If you really get into

how things feel, Example: if smooth skin, a soft body, and the

feeling of touch, is what really turns you on, you’re kinesthetic.

Often times, these types of people are the types that like to have

sex in the dark, and they still find it satisfying because after all, it

is all about how things feel. If your auditory then it is the sound

of a personal voice that really does the trick. Or, it is a type of

sexual language that gets used, that gets focussed on the most.

If you’re visual, well, that speaks for itself. It is all what you see

that makes sex gratifying. If you know where you fit and what

you respond to the most, then it makes your sexuality much

easier to understand. Even to yourself. ;)


Another thing that gets in the way of healthy sexuality is that

people are just not honest with themselves about how much

they want to share with a partner about their wants, likes and

dislikes. Sure you can say touch me here, touch me there, but

that is not the same as saying, you want to be tied up, or asking

your partner to be a sex slave. Often times our most prized

sexual fantasies stay locked in our minds because we fear that

our partners will say “Are you crazy?” :eek:


Even though people are willing to participate in sex, it becomes a

guessing game. They also get offended if we guess wrong! “You

want me to do what?" :mad: :eek:

I guess a good point I can use from experience is that I have

masturbated alone for a long time even though I have had

partners.

It wasn’t that I was ashamed, I’m very proud about my

sexuality! It had a lot to do with power.

I was not willing to hand over the controls of my sex

life, even though I participated willingly in sex with other people.

I have only just begun to teach my new partner, but this time I’m

honest about what I really want. I think healthy sex starts with

honesty, and of course talking about it!


This of course could open up a whole new thread about how

many of us have partners, and how we told them about our

conditions. Sex is really the last issue that I worry about in a

relationship. What do I look for first, long before sex?


1#Creativity.

2#Strong-mindedness, and a motivation by curiosity.

3 # Ideals: People who really want to make the world a better

place.

4# People who are very happily obsessed with one or more

hobbyhorses (Usually five or six).

5#People who are aware that they are wonderfully eccentric and

are aware of it from childhood.

6#Intelligence.

7 #People who are opinionated, outspoken and are

convinced that they are right and the world is out of step.

8#A mischievous sense of humor.


9# Someone who has no need of reinforcement from society.

Love consists in this: That two protect, touch, and greet each other. Rain Maria Rilk

[Jules]

Stay, you and I have a friendship, and I think you are great supporter of BLO.


Your posts are always welcome:)

[Sophie338]

Hello Jules.

I was wondering, is being devoid of a sexuality considered unhealthy? Over the years I have to admit that my being open about my being devoid of a sexuality, or sexual emotions. Has often been greeted with confusion.

I don't put this down to my being born with the condition I had, though I do blame the surgery to some extent. (Physically)

The thing is on an emotional level. I am pretty well empty in that department. That is me, personally.

It is not a confrontational question :) it is a question that has always been on my mind.

Would you consider that to be a loss or just something different?

I am curious.

Hugs :)

Sophie.

[ptrinkl108]

Hi Dana. I got a great chuckle out of your new avatar. I read all of your posts and find them very interesting. I really appreciate that many times, when intersex people first post to this forum, you patiently use your many years of intersex experience and knowledge of intersex to help them sort out what is happening with their bodies. I know you did that for me through private messages. Whenever you get down, just think of the many people who have thanked you for helping them on this forum.

I sometimes think about what it is to have a "beginner's mind". Years ago, when I first played guitar, everything was so fresh, and I was not so worried about the technical issues of guitar performance. Technically, I did not know much. I just wanted every note to sound clear.

I am not an expert on Klienfelter's syndrome (XXY). I have heard that some Klienfelter's syndrome support groups, particularly parents of Klienfelter's children do not want to have anything to do with intersex. These people also do not want to have anything to do with gay Klienfelter's people. I understand that they have made life miserable for a couple of gay people with Klienfelter's syndrome that I know. I am sure that there are also many doctors who would go along with the idea that Klienfelter's syndrome is not an intersex condition. These doctors seem to want the intersex movement to be very small, because the smaller and more divided the movement, the less pressure they could potentially feel. I suspect, but do not know for certain, that urologists and other medical people involved in treating intersex people, have privately met and discussed ways to define intersex in a way that would minimize our numbers. I suspect that there are also people who eagerly await the almost total elimination of intersex in advanced industrial countries through genetic testing and counseling. It very well may come to pass that intersex will be almost exclusively "third-world" within fifty years.

Personally, I want the intersex movement to be generally inclusive. Still, I do put some priority on the notion that if you are intersex, that you grew up different in a way that was physically apparent at some time in your development. That Klienfelter's people often lack "palpable testicles" seems to be a sign of physical difference, even if it is not termed ambiguous genitals.
(Revision Note: I did some medical research, and found that lacking "palpable testicles" is medically considered a form of ambiguous genitals.).

I also know transgender people, who knowing the difference between the intersex and transgender movements, and never claiming that they themselves are intersex, quietly work on a daily basis to advance the rights of intersex people. Some of our strongest allies are transgender.

P.S. Sofie, B/D is Bondage and Discipline, also sometimes called S/M.

Peter

[cougar9q]

What are you looking for? A happy sex life or a pleasurable sex life? I'll tell you that I personally would love to have a pleasurable sex life. But the catch is that, some of us can not masturbate, or and or some of us can not orgasm. Hum... that leaves myself and many others, or atleast I can say for myself angry. At whom you ask? The doctors? Our society? My mother? Or even my Creator? You know what I will never know that answer. Even if I had I would still be as pissed off as I am now.

You may say just move on with your life. I say that to myself and I still don't feel any better. It's about "courage." The courage to accept rejection from not only from others but also from one's own mistakes. It's about putting yourself out on the line not just for others, but most importantly yourself. Happiness or her cousin Pleasure are of the mind. With the mind you are able to see a human being perform an honorable act, or watch death on the tv screen. Believe it or not it's about your perception. What you think of yourself and your situation.

Your mind is a computer and your fingers deliever orders to how it operates. You are you own operator of your life.

I say that to myself so many times and hear it from everyone else.

Happiness and Pleasure are hard work and are achievable. If look at your life once again your may already have both.

I get pleasure from my senses when I smell a rose. These objects or ideas exist in all shapes and forms.

For me it's about what you still have and how you use it:

the rest of your life

Best of Luck,

Monica

[Betsy]

Dana, I don't know if your post is intended as a farewell, but if it is, I'm not sending the Harvery Fierstein autograph I was hoping to snag for you next weekend when I'll be sharing the stage with him (or shall I say, he'll be sharing the stage with me!)

Betsy

[Jules]

Hello Sophie.

Honesty, sex is subjective. To be devoid of any kind of sexual

feelings is called A-sexual. It happens. It is not always related to

being intersexed. I would say that it should give you energy to

focus your life on other postive things. Sometimes it is a hormone

issue. I read in "Time" that a woman who lost all sexual desire

when her ovaries were removed begain takeing testosterone

and had her sexual desire came back ten times fold.

I hope you were not saying that you are devoid of all emotion.

that would be very sad. You can have love without sex.

In fact I would choose love and friendship, anytime over sex.

I have been very lucky though in the sex department. Have you

ever in your life thought about sex or have you been numb from it

as long as you can remember? I think it is a important question?

It it a loss? :confused:

That depends on what is going on in your life. Plenty of people

have no sex life and still find life very rewarding, it is all how you

understand yourself, and what makes you happy.

[Sophie338]

Hello Jules :)

I hope you were not saying that you are devoid of all emotion.
that would be very sad. You can have love without sex.
In fact I would choose love and friendship, anytime over sex.
I have been very lucky though in the sex department. Have you
ever in your life thought about sex or have you been numb from it
as long as you can remember? I think it is a important question?


I am devoid of some emotions, but this is probably a matter of opinion. I don't associate my being "asexual" with being intersexed, more the surgery in physical terms, but I know intersexed people who are sexually active. of the very few I know to have the condition I have, I know some are sexually active.

With me there is a strange thing going on. Many will find the following a bit peculiar, And I am being perhaps a little too open about myself, but I feel it worth mentioning because it is relevant.

Like I can sense a feeling more as a flavour, and associate a particular neurochemical to it. Phenylethylamine, Oxytocin and so on. (The rule seem to be if it has an amino group, or is a peptide I sense a flavour, Dont ask :) )

If it is something like Serotonin it has no "flavour", but does have an effect on mood as do a number of steroids. (Mainly 3-hydroxy steroids, so that sort of excludes androgens).

I am both a synesthete and a biologist so that may go some way to explaining how my thinking works on this.

Have I ever thought about sex? Well yes, I have, I have felt like I dont like the idea being dictated to by my biological make up. And felt grateful for the fact that my biological make up has not involved my seeking some sort of sexual gratification.

All there has been are things which are "grey areas" to some, such as close freindships or whatever, so in that sense I am not devoid of all emotion. I think my objection to the word "Sexual" stems from the fact that it implies I am being dictated to by my biochemistry in the eyes of medics. I tend to regard them as being rather feeble minded as a result. But then how would they deal with my being as truthful as I am here?

I have just reached a very strange state of being which is something like being subjected to having every single thought I have at any given point in time running simultaneously.

That is nothing to do with my condition, probably my being a synesthete has something to do with that, there are many non intersexed people who are synesthetes.

This does not mean to say I am incapable of closeness, or freindships. Those are things I value highly. I am just incapable of any physical sexual expression and some of the things that underlie that are either missing or fragmented in some way.

I really wish I could clarify how my thinking works and how my emotions seem to work too. But without going into some strange and deep levels of self awareness, that would not be very easy.

One thing I do regret, bitterly in fact, is that I cannot actually feel in the true sense of the word, more sense things. I do envy (I know that is a feeling) people who can actually feel the fullness of sexual emotions, rather than just have this "Ah this is xyz, respond with abc, oh dont bother, it wont happen".

But having said that my perceptions are such that I see the world from different perspectives. My ability to differentiate colour is one example. I can see the world in a way that some people probably find hard to imagine, like seeing 3 or 4 seperate colors in what most people would only see as one colour. There are, as any neurologist will tell you, a number of trade offs, like the blind man who can tune a piano or whatever. with me lacking some of the sexual emotions seems for some reason to have given me some abilities and insights which are of great value to me.

I have noticed that in some religious beliefs that there is a thing allled ascetesism where people renounce thier sexuality and as such reach a different level of consciosness. I dont know, but I figure that what they may be thinking of is this trade off concept.

I would not say I was living at a different level of consiousness, rather I just percieve things differently. More a sort of heightened awareness, oddly enough that does include an awareness of emotions in others. My hearing and sense of smell is heightened as well so I can pick up on things I suspect normally cats and dogs would but humans would not.

I imagine that a lot of people will read this and find that explanation hard to understand, but the truth is that if you lack something there is often some compensation elewhere. The human nervus system, mind and the human soul is an amazing concept when you think about it. As is the complex nature of life in general. I have just reached this point of acceptance where the way I am emotionally or whatever, is as I am. I can only be honest and say that this is where I am at and hope that some can understand it.

One of my biggest fears is being alienated further because of my varied thought processes. So I am taking a big step in trusting people by being so open with you all.

This is not a confession I make very often.


Hugs :) :)

Sophie.

[Sophie338]

Sorry Mixed it up again, 3-oxy Steroids

:)

[Sofie]

Touch, taste, smell, skin on skin, melting away in someone's arms, falling asleep and waking up beside someone else

Sofie

[ptrinkl108]

Thanks Sophie for your post about being a synesthete. That you experience feelings as flavors is really interesting. I am not a synesthete but your observations about perception ring true. I agree that the brain is mysterious and complex. I can relate to the feeling of many thoughts running through the mind at the same time. For many years, my mind was like a multi-track tape player, and there would always be music going through my mind, no matter what else I was doing.

Later, after finding the "off" switch for my internal radio, I found that my dreams became really interesting. I know that many people consider it extremely bad taste to mention one's own dreams, but bad taste never stopped me. For instance, the other day, in a dream, I was reading an imaginary legal document issued by the local U.S. District Court. Half way through the document, I realized that the document was a ruling granting significant new civil rights to intersex people. I wanted to post the document on this site. (Too bad it was only a dream.)

I find it interesting that although you do not claim to have many feelings, that you are able to sense the internal feelings of others. I have similar experiences, and often wonder about how a person as limited as myself in so many emotional ways, can actually have a pretty accurate idea of what is going on inside of other people. Maybe it has to do with my learning at an early age that I had to become a very good "reader" of social situations for my own safety.

I have found this site to be a great help to me as an intersex person. Except for one or two close friends, I would never discuss these things with others. I believe that you are developing your true voice through this forum. Thanks again for sharing that you are synesthete.

Peter

[Shodan]

Hi, my name's Shodan 18, XYF, until I can decide on MY name, I'm currently in disagreement with my current.
Anyway, I've known I'm intersex for ooooooh, 6mths to the day.

I was born with cloaca extrophy, and from what I've been told about it in regards to my life is it means I was hit with every branch while falling down the tree of lifes little tortures.
At least I'm only partly paraplegic, I can still move my legs, but I use a wheelchair.
OK, onto my opinion.

INTER-SEXUAL
???
Personally, I have no problems with such a label, (Although the fact we label sexuality could be a problem in itself!), I identify myself as intersexed (its just so hard to fit into conversation)
I am not a man raised as a girl, she-male or anything, I am a combination of 2 extremes.
If I think Intersexual describes me, sure I'll live by it, even embrace it.

NORMAL-SEXUAL???
Cmon, wt??
Who's idea was it to suggest hermaphrodites aren't normal? We were born this way for a reason, deep down we all know it.
Maybe if doctors hadn't screwed with some of us, THEY wouldn't have made us seem like we are abnormal.
(Sure my genitals are screwed, and I'm gonna be a virgin for a looooong time to come, but its how I was born, and it should be MY choice to embrace the physique of a girl or boy, sadly, that choice was made FOR me.)

MY FINAL THOUGHT:::
I only wish my friends were more able to relate to what we go through, but they try they're best.
Its simply a misunderstanding, People simply need more exposure to hermaphrodites, and it makes more sense.
How many of us grew up listening to people tell us the bible says homosexuality is wrong? We simply needed more exposure to gays to understand and to be able to identify on the same level. Whatever sexuality, its the emotional connection that remains the same.
I intend to COME OUT as a hermaphrodite, Tatoo, name change, I havent decided what to do with my body, I simply remain on the homones (I was lied to about) I'm so far required to take.

PS. God made the world, but People made religion, and which of those WROTE the bible. I never read anything about hermaphrodites in the bible, who ever said the bible covered EVERYTHING is sadly mistaken.

[Sofie]

Hi Shodan,

Nice to meet you

Sof i e

[ptrinkl108]

Hi Shodan,

Welcome to Bodies Like Ours. In your post, you mentioned that you were born with Cloacal Exstrophy. I have spent the last couple of hours researching Cloacal Exstrophy on the internet. Apparently, it is a very rare condition, with a rate of 1 per 250,000 births and has a very high mortality rate. I hope that you find this forum valuable and that you get the support you need.

Peace,

Peter

[Jules]

I have sent you a PM Shodan. I wanted to say you are very welcome member here. I look foward to your posts.:D

[Shodan]

*PM 2 u Jules*
==========

I was extraodinarily lucky in terms of the mortality rate.
They hadn't detected the Spina Bifida until I was born (so I was born normally) They'd usually do a Ceasarian to prevent the skin sack from bursting, I was just lucky!

So, yeah!!!

HH HH IIIIIII
HH HH II
HH HH II
HHHHHHHH II
HH HH II
HH HH II
HH HH IIIIIII
everyone!!!

Look forward 2 chattin more often!!!

* Hope my 1st post wasn't too heavy 4 u all, I just needed to get it out!

[Sophie338]

Hi Shodan :)

Welcome to the list, Look foreword to talking to you more

big Hug

Sophie :)

[Medic 4]

I dont understand why the hell you took offense to that "Dehumanizing term" thats the same as if a diabetic patient took offense to being called a "An Diabetic"
I think you owe the medics an apology for your rudeness.
It seems to me, that you have a problem accepting yourself as yourself and are so selfconscious about your condition that you think everything everywhere is persecuting you. I think the term "intersexual" has the same level of "dehumanization" as the term "diabetic" and there are millions of diabetics that are called "diabetics" with no complaints of "being dehumanized by a term" Not to mention the fact that there are way more important issues to worry and complain about.

[miriam]

With my limited knowledge of the English language I would say that ‘an diabetic’ is not correct. First because ‘diabetic’ starts with a ‘d’ and second because there is a word missing after ‘diabetic’. Correct examples are: a diabetic person, a diabetic diet, a diabetic foot and even a diabetic dog. Similar to the use of the word diabetic, you can call me an intersex(ed) person.

I don’t know why you use the nickname ‘Medic 4’ because you certainly are not a medic. For medics it’s a kind of sin to name people after their condition. Good doctors will say ‘mrs. Johnssson’ or ‘the patient in bed 4’ and not ‘the knee in bed 3’ or ‘the diabetic in bed 5’.

Personally I don’t have a problem when someone less educated will use the name of my condition as an alias for my name. But ‘intersex’ is not the name of my condition. Androgen Insenstitivity Syndrome (AIS) is an intersex condition, so that makes me an AIS’er and not an intersex or an intersexual.

BTW, I hope you can procreate AND I hope you will get many healthy children. But if you will get a child with the syndrome of Down, I sure hope you will not call your child a ‘downer’.

Not to mention the fact that there are way more important issues to worry and complain about.

You are sooooooo right, but please do that somewhere else!

[ptrinkl108]

Hi Miriam,

I agree with you that "Medic 4" should take his concerns elsewhere. I took a look at his website, with its picture gallery of cars wrecked in accidents. I like hot cars, but pictures of car wrecks don't do anything for me. I suspect that he found this site, by entering the word "medic" in a search engine. Once here, he probably could not pass up the opportunity to try to promote his own personal website related to his being a medic by attacking Sophie. I suspect he is looking for cheap publicity.

There is something of a word usage problem. I guess that in England, doctors are called "medics". In the United States, Emergency Medical Technicians (EMT) are called "medics". They are the people who work in ambulances. So, you are definitely correct that "medic 4" is not a doctor, but in the American usage of the word, he never claims to be a doctor.

Peter

[miriam]

Hi Peter,

I live in the Netherlands, about 10 miles from the German border. For that reason Dutch is my first language and German my second language. English is competing with French for the third place. So my knowledge of the English language is rather limited.

Ik leef in Nederland, ongeveer 16 kilometer van de Duitse grens. Daarom is het Nederlands mijn moedertaal en Duits mijn tweede taal. Engels en Frans strijden om de derde plaats. Dus mijn kennis van de Engelse taal is tamelijk beperkt.

I guess you don't want me to continue in Dutch? ;) ;) ;) My 'dunglish' is easier to understand than when I would write to you in Dutch ;)

According to Merriam-Webster a medic is 'one engaged in medical work or study'. In my vocabulary an Emergency Medical Technician is a kind of paramedic who is only trained and licensed to provide basic emergency services before and during transportation to a hospital.

Anyhow, just like a doctor or any other real medic, an EMT should not use the ‘nature of the medical emergency’ as a name for the people who he or she is offering his or her services. I had not seen his website at the time I posted my reply, but now I’ve seen his pics I find it even more amazing that he is calling us ‘intersexuals’.

Groeten, Miriam

[ptrinkl108]

Hi Miriam,

Thanks for the Dutch lesson. Here is my first Dutch sentence:

Ik leef in Berkeley, ongeveer 14,000 kilometer van de Duitse grens.

Peter

[Betsy]

I'm kind of curious if he has an intersex condition himself.

Betsy

[Dana Gold]

I started working in the medical field at age 18 ('68) as a Krankenpfleger (nurse) in Germany, from there in various US hospitals (medical and psychiatric) as nurse's aide and in the US military as medical corpsman (Viet Nam era). From hospital work, I got into the bio-medical/health (laboratories).

During that time I have learned that various "personalities" comprise each of the medical fields. And have recognized that (usually) people who engage in such work have a general sense of caring for their patients. I have also noted that after awhile, one becomes s/w "immune" to the constant daily barrage of death, pain, and bloody horrors.

I see a parallel with Medic 4 and the character (played by Nicholas Cage) in the movie 'Bringing Out the Dead'. I would like to ask you, Mr. Kelley, if you ever have "treated" a person who was in body, sexually ambiguous? Did it disgust you, piss you off or were you indifferent?....maybe even somewhat afraid to touch the person. Or have you never had that experience?

Did you know that it is a fact that some people who have been attended to by paramedics and found to be "sexually abnormal" were mistreated, or left to suffer and die, while the med crew watched. Intersexed people fear mistreatment from med personell because it is a fact that some, while being seen as "sexual deviants" have been snubbed, given sub-standard care, ignored, or worse...AND grossly abused when some were perceived as transsexuals (which it is a fact, that many transgendered people are regularly mistreated and even abused and denied care at all by med personell). I have personally experienced such discriminations. Therefore we are ALL very sensitive to the issue of how we are labeled, perceived...and ultimately treated....as either human beings or "things"..... I can provide news articles for you as proof of such happenings, all in major US cities and hospitals.

If you are perhaps "burned out on your job" and I can (believe me) see how that can happen (I worked ER and seen war casualties.... and it was hell to behold and experience) then it would be prudent for you to proclaim your aggravation with such "patients" elsewhere...like in the bars with your fellow disgruntled medics (if any)....it is rude and contrary to the medical dictum of "Do no Harm" to force your feelings upon people who suffer from any and all kinds of life trauma. You should apologize to this Forum for "splashing" us with your "cold" assessments without knowing our medical histories and sufferings. Why should any of us apologize to the medics who have abused/under-cared for us????...that is like calling the victim the perpetrator.

Lastly, what do you know of the label intersexual? Are you one? Or curious?...what was your purpose to come here and say what you did? This is a forum that functions as a group support, and not a "talk-show" where "callers" merely voice their "opinions".
Did you perhaps "dial" the "wrong number"?

[Dana Gold]

Hi Peter,

Here's your second lesson in Dutch (and all other European languages) in regards to numerical use:

ongeveer 14,000 kilometer van de Duitse grens

Europeans do not use commas to separate whole numbers as italicized.....they use them as we do decimal points; for example:

American: 12.250 would be 12,250

14,000 would be 14000

;)

[Sofie]

14,000 would be 14000

14,000 would be 14.000 or 14000 or 14 000.

14.000 ½ would be 14.000,50

Sofie

[Dana Gold]

I've been "away" much too long, thanks for the additional correction, Sofie.


PS: Saturday is a good day for some Goldwasser u. Lebkuchen :cool: ;) :p

[Dana Gold]

After some reflection on my previous (emotionally-charged)reply to Medic 4, I think there was some misunderstanding by him that when Sophie mentioned medics (as in British doctors), he though paramedics attending an emergency. And some misunderstanding by me that he was being "predatory".

quote: "Not to mention the fact that there are way more important issues to worry and complain about."

Perhaps this phrase meant emergency medical treatment concerns, life threatening injuries, traffic blocking ambulance's way (frequent complaint of all emergency medical, police, and fire personell), medivac chopper in time etc. Not to mention over-crowded ER and lack of available trauma personell to take the patient in.

Therefore my enflamed rhetoric, although I stick by its reality and authenticity of event references, may have been too presumptuous and accusatory towards you, Mr. Kelley. However, you did come on rather angrily and unfounded, especially in your harsh words of Sophie and others being saddled with a "persecution complex". And I being the very vociferous, reactionary one of this forum responded in kind. I apologize if my words did not apply to you. To further understand where the members of this forum are "coming from", you might want to read more of the unique experiences most of us have had with medical personell and in our lives...something most, if not all diabetic people or other non-"intersexuals" will ever have to experience or be concerned about.

Dana Gold

[Tiffanie]

I wanted to tell everyone how much I loved reading through all of the postings on this thread -- the intersex "label", the intersex/transgender divide, healthy sex, medicalization, and so much more. What a marathon of inspired thought -- I wish I could applaud all of you on-line.

So many things were touched on. I learned much and thought much about all of them. Thank you everyone, and thank you Bodies Like Ours.

Now, has anyone come up with an alternative to "intersex" that they really like? I've been struggling with this for years . . . if you have ideas, I would love it if you started a *new* thread!

Tiffanie

[Sunshine1]

Everyone may say that they have an "intersex condition" but I don't blame some doctors or medics using the word intersexual because one only has to go to the Intersex Society of North America website and read about the article that was posted today "Federal Judge finds Wyoming Prison Violated Constitutional Rights of Intersexual Prisoner." See that title gets attention and it wasn't until half way through the article that her actual medical condition is addressed. The term intersexual catches someones eye in a title or makes for a good sound bite but the actual medical conditions that cause intersex conditions get somehow lost and that is frightening. We make good press and are used to serve someone else's purpose

I've dated paramedics and they are the most understanding people you are going to meet in your life. Sure, some might not use the correct words or they might be a little crude in their approach but they do care and got your back in the worst times of your life. I've told them about CAH and how I only have female chromosomes and only female sex organs but that my adrenal glands lacked the ability to produce cortisol to suppress excessive androgens which has the possibility of some females with CAH to have external genitals that could look ambiguous or look male. I also told them that I take a med to replace the cortisol that my body doesn't make which not only suppresses the excessive androgens BUT the cortisone med keeps me alive during times of physical stress such as accidents, sickness or operations. After going "No Shit? " it wasn't the external genital part the paramedics focused on but rather the medical aspect. Before all this, I didn't even know these guys that well and after I told them it was no big deal and they were glad that I SHARED the info with them. In turn, they told me about relatives that had different types of medical conditions also. They asked me if I was allowed to drink alcohol and then asked if I was allowed to drink as much as I do ? I even told them about the clitorectomy and without missing a beat they tried to make me feel better with only the sense of humor that cops/medics/fire fighters develop after seeing so much sadness in the world. "Baby, I'll work with that !" and "I'll make you forget all about that surgery, sweetcheeks !"

This has just been my experience and I'm very sorry if someone has had something different happen to them. I don't know anything about the transsexual experience so that might be very different. I have had a nurse tell me that ambiguous genitals look weird but she also stated that the clitorectomy was barbaric. So, go figure and I now give her the benefit of the doubt that she was just flustered in what to say to me.

I have no problem with the term hermaphrodite, pseudo-hermaphrodite (I could spell that when I was ten) , ambiguous, a-typical, or intersex as a medical term to describe a Characteristic of my medical condition and I also think the term equivocal could work. But, the term Intersexual seems more like someone that wants to or needs to live in between the genders regardless if they have an intersex condition or not and that's cool to. I was born with Simple Virilizing 11- hydroxylase deficiency Classical Congenital Adrenal Hyperplasia which caused me to have an enzyme problem in my body's metabolic pathway and the added bonus of sky rocketing blood pressure if not managed properly. Boring stuff that doesn't make for a good title except in an endocrinology journal.

I've emailed with the surgeon that did my clitorectomy/vaginoplasty in 1975 and even he used the term "intersex conditions" and I was impressed with that because it showed that he was not just painting everthing over with one stroke of the brush. Medicine is improving on how these conditions are dealt with and looking back to the 70's/80's with CAH being the only one that I could voice an opinion on that the medical community did a pretty good job. Sure it wasn't perfect and it was uncomfortable at times but they were learning and I'm glad that someone cared enough to find out about CAH. Yes, my psyche is a little cracked but who isn't ? No, the surgical technology wasn't the best but I'm glad something was tried. I remember what I looked like and it was cool but something had to be done sooner or later because no way could I have a period out of what I was born with and I'm glad it was done before age 8 so everything would be in working order. Yes, it wasn't the best surgery but it was the best for 1975 and I can be upset that it isn't perfect but there were two surgeries that were done which the clitorectomy left a lot to be desired but the vaginoplasty turned out wonderful. I can cry in my vodka about the clitorectomy and the surgeon would be right next to me picking up the tab. He's a good man, very humble, sweet, compasionate, and of course very intelligent whos only goal was to make the quality of my life better and although the surgery wasn't perfect it did improve the quality of my life.

I'm sorry if I've offended many of you by my post. I do enjoy reading all message boards and I've grown so much by this experience. Being born with any condition is hard and if I was born with just an enlarged clitoris and had some sort of surgery, I WOULD of been angry but I was born with something that was a cross between a clitoris and a penis =phallus that I voided out of and I only had female chromosomes, a uterus w/two ovaries and no male testes. Plus, I saw myself as nothing but a female. I have one question for all of you that are against surgeries and it's how long would I have to wait untill surgery would be acceptable in your eyes? Until I was having my period through my phallus? Is that really the right time? I don't mean to offend and I'm just trying to understand. Maybe, I should asks the same question to the Intersex Society of North America but I know that I'm not worth the response to them.

Sincerely,

Aimee

[Shodan]

I tuly love stories like that, I'M GONNA GO FIND A PARAMEDIC!!!

[Shodan]

I have one question for all of you that are against surgeries and it's how long would I have to wait untill surgery would be acceptable in your eyes? Until I was having my period through my phallus? Is that really the right time? I don't mean to offend and I'm just trying to understand. Maybe, I should asks the same question to the Intersex Society of North America but I know that I'm not worth the response to them.

Ok, what people are saying against the surgery, is that it should be the PATIENT's choice NOT the PARENTS, its US that lives with it afterall

I personally resent being raised female, I am an XY Genetic male, castrated because it was EASIER to MAKE me into a girl, I was lied to my entire life (I'm 18 now) and I found out on my own this January, I was FORCED to take hormone tablets and was LIED to about the reasons why

In plain english: The TOOK away my chance of being a father, LIED to me and raised me a girl, LIED to me again when I asked DIRECT questions, and FORCIBLY ALTERED my body AGAINST my will

These are only a few of the issues that some ISs are faced with.

WARNING::: NO OFFENSE INTENDED
This question to you is to help you understand the feelings that I go through:

How would you feel, if all your life you hated your body but accepted it as nature's way of telling you that you were not meant to have kids? What if you discovered that it wasn't nature, but DOCTORS that took away your right to bear children? How would you feel?

[miriam]

Dear Shodan,

Ok, what people are saying against the surgery, is that it should be the PATIENT's choice NOT the PARENTS, its US that lives with it afterall

I'm against unnecessary surgery. It seems that you are looking at the problem from your own point of view. When you want to be an intersex activist you should widen your view otherwise you will never be able to speak for US. In Aimee’s case it would have been a big mistake to wait too long. Besides that, there are many people who are quite happy with the surgery they underwent when they where young. Again, I’m against unnecessary surgery, but if doctors decide to do surgery, I assume they do it in the interest of the child, knowing that I and many other adult IS people have a problem with it. That is quite a difference from, let’s say, 20 or 50 years ago. That was the time that doctors only heard John Moneys side of the story. IF a doctor decided to operate and it turns out to be completely unnecessary and unwanted (that’s up to the child to decide) it now will be possible to sue doctors. Not only because the surgery was unnecessary but, more important, they COULD know that the surgery was unwanted. That last part makes it extremely difficult to make general statements about IS and surgery. Every person with CAIS identifies female, almost everyone with Klinefelter identifies male, most people with CAH identifies female. And all those people have a different opinion about what the best treatment is.

In your first post you told that you have Cloaca Extrophy (CE). Cloacal extrophy is associated with a variety of anomalies. Mortality rates are intermediate with about 50% survival, but long term management is frequently more complex, requiring multiple reconstructive surgeries and in a small subset of males, sex reassignment.

http://www.duj.com/cloacal.html

http://web1.tch.harvard.edu/cfapps/A2ZtopicDisplay.cfm?Topic=Cloacal%20Exstrophy

CE is a very rare birth defect that happens once in every 250,000 to 400,000 births and ( I guess you don’t want to hear this) from a medical point of view CE is not an intersex condition. Not every congenital disorder of the genitals is an intersex condition. Even though CE is not an intersex condition, we have at least one thing in common: in the past many doctors made decisions that have led to very unsatisfied patients. Only recent research by William Reiner and John Gearhart revealed that many people with XY chromosomes and with CE, raised as girls identify male. That research will hopefully change the treatment of newborns with CE.

http://www.isna.org/drupal/node/view/564

In my view it has no use to be mad at doctors who do a good job today. Many of them were not yet born in 1958 (the year I was born). And many of the doctors from that time are retired now or even dead. Just being angry about the way you were treated is a very inefficient way of intersex activism.

CE is one of the medical emergencies where surgery is absolutely necessary. It was nature that made this necessary, not a doctor! You can disagree with the decisions that were made then, but even the best surgeon would not have been able to change your body into a ‘normal’ (what is normal?) male body.

I personally resent being raised female, I am an XY Genetic male, castrated because it was EASIER to MAKE me into a girl, I was lied to my entire life (I'm 18 now) and I found out on my own this January, I was FORCED to take hormone tablets and was LIED to about the reasons why

I’m an XY-female too and I identify 100% female - if not 110 percent ;) If my gonads would not have been removed, I would have had a much higher risk of cancer. And I don’t see it as being castrated. I was infertile from the time I was born, so even when I would have kept them, it would be impossible for me to be a ‘father’ (hmm, and even when it would have been possible I’m 100% sure I don’t want to be a ‘father’. I’m the mother of two wonderful girls and I’m extremely happy that they don’t have any of my genes).

You have the right to be angry, but please don’t try to speak for me. We have different conditions and obvious different opinions about the treatment of people with an IS condition.

How would you feel, if all your life you hated your body but accepted it as nature's way of telling you that you were not meant to have kids? What if you discovered that it wasn't nature, but DOCTORS that took away your right to bear children? How would you feel?

Do you think you are the only person in the world who has been lied to? All my messages here at BLO end with the same words: The truth, the whole truth and nothing but the truth. Please believe me when I say that I have many reasons to use these words. Try to convert your feelings into positive energy. It’s impossible to change the past, but the future belongs to us. Or at least, it will belong to us if we will tell the medical profession what went wrong in the past and what we see as the perfect treatment AND if we can do that without shouting and yelling.

Groeten, Miriam

[Betsy]

You know, there is a big difference in viewpoints that are expressed depending on one's own experience here. I personally don't see anyone's viewpoint as being more valid than the others, or any ones chormosome makeup as being more. That said, as Aimee mentioned and I have in the past (perhaps not here, but other places) I have no issues at all with the vaginaplasty done on me because like Aimee, I was going to menstruate. Although I don't think I would have ever menstruates out of my clit (or in my case, lack thereof) as the physical structures are not connected nor never were in my case. I do have huge issues with the clitorectomy done on me as an infant without a voice. At least the vaginoplasty was done in early teens so I had some type of clue and could deal with the dilitations in my space and comfort level.

On surgeries done today, particularly unnecessary ones, I have very little compassion for either parent or doctor. In fact, I have less than a little, I have none. Just because techniques may have improved doesn't validate this barbarity. Improved techniques ignore the fact that they surgery is still cosmetic and unnecessary.

I disagree somewhat with Miriam regarding CE and intersex status. Left alone with only the medical emergency taken care of is one thing. Having a vagina surgically created, given hormones, and having what may have been functional testes taken away is another. Call it whatever you want but sex reassignment surgery on a child is wrong. Miriam said reconstructing a penis would have been impossible but that leads right back into the trap that a male needs a penis to survive. Taken further, that statement can then be used to justify clitorectomies or partial clitorectomies (and despite the medical field calling them reductions or recessions) in truth, they are partial clitorectomies.

That said, I also think anger is good sometimes. Yes...do convert it to good energy, but don't ever let it go. It is my anger that carries me through my own activism.

On using the unnecessary surgeries to bring awareness to IS, fact is that is what gets peoples attention. I'm not sure how many of you listened to my NYC speech but that is what I honed in on. I had five minutes to speak. Can you imagine the 8000 glossy eyes staring back at me if I went up there tried to explain AIS or intersex without the surgery aspects? I went for the easiest to understand for the masses---that they do unnecessary surgeries like sex reassignments for boys born with micropenis or in Shodan's case, no penis. That they do partial clitorectomies on girls born with clits bigger than what someone else thinks should be acceptable, that they do surgeries on boys with holes in the penis other than at the tip so they can stand to pee and have functional penetrative sex.

It's a big issue and I think rather than telling others their anger is inappropriate or misplaced is lowering ourselves to those who would perpetuate the harm. I cannot identify with the AIS experience and I don't think those without CAH can identify with having a clitoroctomy done to them. Shodan, be angry, be pissed off. you have every right to do so.

They key is to use our anger collectively...yes, our stories are different but as a whole, they are very powerful.

Betsy

Betsy

[Shodan]

just respect my right to be pissed off, Lol thanx Betsy.

Hi Miriam!!!
First let me apologise for coming off like I was against all surgery, ok?

Like u I am against UNNECESSARY surgery,
Point of view? My own, not a lot else to go on sometimes, Lol

My problem is that some of the surgery, such as the removal of my testes was unnnecessary at the time.

I am glad u are happy being a girl, MORE POWER TO YOU
and I fully respect that some people are happy the way they are.

I can only speak for myself (or people with similar feelings to me), and that I am unhappy with what was done, and the disregard of my feelings and future well-being.

If surgery is for health reasons, then by all means go ahead,
but if it isn't an immediate problem, it should be left up to the patient.

Ok? Friends? LOVE YAS LOTS!!!

PS, Thanx for those links too, information has been hard to find!

[miriam]

Ok? Friends? LOVE YAS LOTS!!!

Of course you are a friend, Shodan and I'm glad you want to be my friend too! When I wrote all that stuff I had no intention to offend you. I'll try to explain...

(BTW, Shodan, in the text below I try to avoid the words he/his she/her because you wrote "I intend to COME OUT as a hermaphrodite, Tatoo, name change, I havent decided what to do with my body..." and I really don't know what words to use at the moment.)

Is Cloacal Exstrophy an intersex condition? In their excellent article ‘Discordant Sexual Identity in Some Genetic Males with Cloacal Exstrophy Assigned to Female Sex at Birth’, William G. Reiner, M.D. and John P. Gearhart, M.D. clearly state
Cloacal exstrophy is not an intersex condition: aphallia and phallic inadequacy are structural anomalies.

(The New England Journal of Medicine, vol 350, No,4. page 338).

When I said that from a medical point of view CE is not an intersex condition, I didn’t say that CE doesn’t lead to bodies like ours (in lowercase) or that I want to exclude Shodan from Bodies Like Ours (uppercase). When doctors told Shodan that CE is an intersex condition they did that to cover up that they made a terrible mistake. With an intersex condition it sometimes is not possible to tell the future gender identity of a child. That is the reason that some of us had to change their ‘gender presentation’. This is not a transition as we see in transsexual people; it is the correction of a judgment error. But changing gender presentation or not, we stay who/what we are: people with some aspects that are considered male and some aspects that are considered female.

With CE we see a completely different problem. Shodan was assigned the female sex just because it is easier to dig a hole than to build a pole. Shodan’s situation is almost completely comparable to the situation of David Reimer. Boys without a penis are just boys. When Shodan’s doctors say that CE is an intersex condition, they probably will see David Reimer as an intersexed person too.

So…. Not only from a medical point of view CE is not an intersex condition, but also from my personal point of view it is not an intersex condition. I don’t say that to offend Shodan, but to explain to Shodan that the doctors are still not telling the truth. They use the word intersex to cover up their own lack of knowledge. Lack of knowledge that has led to an incorrect sex assignment and the unnecessary removal of testes. The removal of the testes is indeed a castration in Shodan’s case. What has happened to Shodan is even worse that an incorrect sex assignment of children with an intersex condition because in intersex cases with ambiguous genitalia doctors can say that it is impossible to predict the child’s future gender identity. If people had not been listening to John Money, if doctors would have done long term follow up research 20 years ago like now has been done by reiner, if society would have recognized that a boy without a penis is just a boy… Shodan would probably have been raised male. If… But ‘if’ never happened.

Times are changing. Recent research makes it possible to predict a child’s gender identity better than 20 years ago. We know that nurture over nature is plain bullsh*t. We know that complete AIS’ers look like women, walk like women and talk like women, so they are women. We know that most women with CAH have a female gender identity, even when they sometimes behave and think a bit more like men. We know that most people with Klinefelter see themselves as 100% male, even though they have an extra X-chromosome. We also know that for some other conditions like 5ARD and 17BHSD it is almost impossible to tell the future gender identity of a child. But when we start to mix up all the possible conditions and bring them all together under the name ‘intersex’, it will be impossible to give people the treatment they need. I think it is very important that for a better treatment in the future, we need to get a better definition of what is an intersex condition and what not.

Excluding people from the diagnosis ‘intersex condition’ will prevent situations like Shodan’s situation. And also better research will help. But for that reason we should stop calling everything an intersex condition, especially because some people use the confusion for their own purpose (like Shodan’s doctor is doing now). I also have another reason to exclude CE from the intersex conditions. In two recent articles in Dutch news papers the article by Reiner was quoted to prove that children with an intersex condition should be raised according to their chromosomes. That would be as stupid as transforming XY-children with CE into girls.

FYI, I included the abstract of the Reiner article below, as well as two extra links to websites with information on CE. Warning: the graphics can make your stomach turn 180 degrees. But those pics show why I said Shodan wouldn’t be a ‘normal’ boy if raised male. My remark had nothing to do with having a penis or not.


Groeten, Miriam


ABSTRACT

Background Cloacal exstrophy is a rare, complex defect of the entire pelvis and its contents that occurs during embryogenesis and is associated with severe phallic inadequacy or phallic absence in genetic males. For about 25 years, neonatal assignment to female sex has been advocated for affected males to overcome the issue of phallic inadequacy, but data on outcome remain sparse.

Methods We assessed all 16 genetic males in our cloacal-exstrophy clinic at the ages of 5 to 16 years. Fourteen underwent neonatal assignment to female sex socially, legally, and surgically; the parents of the remaining two refused to do so. Detailed questionnaires extensively evaluated the development of sexual role and identity, as defined by the subjects' persistent declarations of their sex.

Results Eight of the 14 subjects assigned to female sex declared themselves male during the course of this study, whereas the 2 raised as males remained male. Subjects could be grouped according to their stated sexual identity. Five subjects were living as females; three were living with unclear sexual identity, although two of the three had declared themselves male; and eight were living as males, six of whom had reassigned themselves to male sex. All 16 subjects had moderate-to-marked interests and attitudes that were considered typical of males. Follow-up ranged from 34 to 98 months.

Conclusions Routine neonatal assignment of genetic males to female sex because of severe phallic inadequacy can result in unpredictable sexual identification. Clinical interventions in such children should be reexamined in the light of these findings.


http://www.emedicine.com/ped/topic704.htm

http://bms.brown.edu/pedisurg/Brown/IBImages/AbdWallDefects/CloacalExstrophy.html

Cloacal exstrophy: A complex anomaly of the abdominal wall, the intestinal tract and the pelvic organs. Infants with cloacal exstrophy have a short intestine, an absent anus, a large defect of the abdominal wall (omphalocele) and the bladder (which is exposed and lacks a front wall), and anomalies of the pelvic bone and genitalia. This is not the same as a bladder exstrophy (defect of the bladder, with or without anomaly of the penis in boys), which is a less severe condition.

[ptrinkl108]

Hi Miriam,

I know that the medical world probably spends as much time as we do trying to figure out what is intersex. The quote from your post:

"Cloacal exstrophy is not an intersex condition: aphallia and phallic inadequacy are structural anomalies."

seems to have a certain "loopy" irrational quality about it to my mind. CAH, AIS and 5ARD involve structural anomalies caused by bio-synthesis "defects". Before the rise of modern medicine, I am sure that a midwife who saw a CE child with aphallia would have thought that the child had atypical genitals. Such a child may very well have been considered a hermaphrodite, as having a penis is central in most people's minds to what being male is.
You said that "Boys without a penis are just boys". I find that sentence very confusing in the context of CE. What about XY girls? You went on to mention David Reimer. I think that there is an important difference between Shodan's case and David Reimer's case. David was born with male genitals and had them removed after a horribly botched circumcision. He was not born with aphallia or a related structural anomaly. When other intersex activists that I meet say that David Reimer was not intersex, they mean that he was not born with structural anomalies. I believe that Shodan is probably intersex as he was born with a serious structural genitial anomally which led to infant genital surgery. (There may be people in the medical and intersex community that would not see Shodan as intersex, but I have not found their arguments convincing.) The intersex community can not have it both ways. We place alot of emphasis in our relationship with the outside world, particularly the transexual community, by claiming the importance of birth conditions. So, given the importance of birth conditions, you would have to say that the cases of David and Shodan are not alike.
It seems that when talking about intersex, there is a tendency to place alot of emphasis on "blending" as a criteria for what is intersex. It seems that "true hermaphrodites" are really the mixture of two zygotes in the womb, and do possess both male and female genital tissue. I suspect that other genitial structural anomalies such as having two penises are also the result of such zyglote blending. So, if we use "blending" in a zygote blending sense of the term, very few Bodies members would be intersex.
There is a more limited sense of "blending" which means having genitals that have both male and female characteristics. This use of the term "blending" seems to include CAH, AIS, and 5ARD. These conditions are mostly hormonal in developmental nature. It seems that there is a tendancy to exclude Hypospadias from intersex conditions although its origin is the same bio-synthesis "defects" involved in other hormonally bases intersex conditions. Here as many other areas of intersex, value judgements come before science. As of today, two very different types of "blending" are lumped together as intersex. This has more to do with social convention than science. Medicine as a social practice cannot escape the problem that classification systems often break down when faced with the real world. We may well reach a day when "true hermaphrodites" who do not have biosynthesis "defects, join Shodan, and decide that those of us who have biosynthesis "defects" are not really intersex. So, returning to CE, how are people born with aphallia not intersex?

Peter

[miriam]

CE and Intersex

Beware! I wrote this while watching teevee. So beware of an extra portion dunglish (dutch-english)….
Hi Peter!

I know that the medical world probably spends as much time as we do trying to figure out what is intersex. The quote from your post:

"Cloacal exstrophy is not an intersex condition: aphallia and phallic inadequacy are structural anomalies."
seems to have a certain "loopy" irrational quality about it to my mind. CAH, AIS and 5ARD involve structural anomalies caused by bio-synthesis "defects".
The proces of sex differentiation is rather complex. But let me try to explain it in one paragraph. Only when at the right time the right signals are given and/or received, a body will differentiate to a male body. If nothing happens the body will remain (!) female. If the signals are too early, too late or in the case of a ‘false’ signal, some body parts will become what we consider ‘male primary sex characteristics’.

In every intersex condition there is a link to this process of sex differentiation. CE is a condition that is not linked to the sex differentiation. XY-children with CE had a completely normal sex differentiation: without CE they would have a normal penis. So it was not a problem with the sex differentiation that was the reason; it was the CE ( I can talk about another hour about the cause of CE, but that would not change the fact that it has nothing to do with the sex differentiation).

That is also the reason why most people in the medical profession will say that the Kallmann Syndrome is not an intersex condition.
Sometimes hypospadia can be caused by a problem with the sex differentiation (and those cases are related to intersex conditions) but there are also many other possible reasons for a hypospadia. That’s why hypospadia in itself is not an intersex condition.

You can’t say “atypical genitals equals intersex”. Ambiguous genitals or the absence of the expected genitals are only a symptom of several intersex conditions. BTW, if people with CAIS are women, you can’t say that they have ‘atypical genitals’ but we DO have an intersex condition. So, Peter, what’s your definition of ‘atypical’…

What (some!) XY-children with CE and David Reimer share, is that they lost their penis because of something that has nothing to do with the process of sex differentiation. They are not and never will be hermaphrodites. It’s like children who were born without arms because of the use of Softenon by their mother. Someone can lose his arms in an accident, but that has nothing to do with Softenon. Even though both situations seems to have the same result (someone without arms), from a medical point of view the condition is completely different because the use of Softenon may have had consequences for other parts of the body.

Before the improvements of modern medicine, I am sure that a midwife who saw a CE child with aphallia would have thought that the child had atypical genitals. Such a child may very well have been considered a hermaphrodite, as having a penis is central in most people's minds to what being male is.
I can tell you that with CE the atypical genitals are the least of all problems. CE is a life threatening condition were body parts that should be inside the body are outside the body. Instead of thinking ‘hey, this might be an intersexed child’, the midwife will think ‘heck, this is not ’good, how can we safe the life of this child


You said that "Boys without a penis are just boys". I find that sentence very confusing in the context of CE. What about XY girls?
And XY-girls are just girls! ;) Obvious the genotype and the phenotype are just two aspects that will form our sex. Boys are boys and girls are girls and that has nothing to do with having a penis or a vagina. For that reason I recognize that male to female transsexual people are female (and FTM are male). And yet, I also want to emphasize that transsexuality is not an intersex condition.
You went on to mention David Reimer. I think that there is an important difference between Shodan's case and David Reimer's case. David was born with male genitals and had them removed after a horribly botched circumcision. He was not born with aphallia or a related structural anomaly. When other intersex activists that I meet say that David Reimer was not intersex, they mean that he was not born with structural anomalies. I believe that Shodan is probably intersex as he was born with a serious structural gential anomally which led to infant genital surgery. (There may be people in the medical and intersex community that would not see Shodan as intersex, but I have not found their arguments convincing.) The intersex community can not have it both ways. We place alot of emphasis in our relationship with the outside world, particularly the transexual community, by claiming the importance of birth conditions. So, given the importance of birth conditions, you would have to say that the cases of David and Shodan are not alike.
As I said before, both David Reimer and Shodan share that their situation is not related to the process of sex differentiation.
It seems that when talking about intersex, there is a tendency to place alot of emphasis on "blending" as a criteria for what is intersex. It seems that "true hermaphrodites" are really the mixture of two zyglotes in the womb, and do possess both male and female genital tissue.
Not exactly genital tissue. In true hermaphroditism people have male and female gonad tissue. That can be in the form of ovotestes or the combination of one ovary and one testis.
I suspect that other genitial structural anomalies such as having two penises are also the result of such zyglote blending. So, if we use "blending" in a zyglote blending sense of the term, very few Bodies members would be intersex.
But ‘blending’ is NOT a criterion for intersex. Ovotestes or a combination of one ovary and one testis are only symptoms.
There is a more limited sense of "blending" which means having genitals that have both male and female characteristics. This use of the term "blending" seems to include CAH, AIS, and 5ARD. These conditions are mostly hormonal in developmental nature.
CAH, AIS 5ARD, 17BHSD and several other conditions all have a (different!) genetic cause. Because of that gene defect hormones are not made by the body, are not converted to other hormones or are not able to connect to a receptor. This can have an effect on the sex differentiation. And again: the ‘atypical genitals’ are only symptoms of these conditions.
It seems that there is a tendancy to exclude Hypospadias from intersex conditions although its origin is the same bio-synthesis "defects" involved in other hormonally bases intersex conditions.
No, as said before, hypospadias can be a symptom of an intersex condition and in other case they are a symptom of another condition.
Here as many other areas of intersex, value judgements come before science. As of today, two very different types of "blending" are lumped together as intersex. This has more to do with social convention than science. Medicine as a social practice cannot escape the problem that classification systems often break down when faced with the real world. We may well reach a day when "true hermaphrodites" who do not have biosynthesis "defects, join Shodan, and decide that those of us who have biosynthesis "defects" are not really intersex.
I guess you will understand that I will also disagree with you on this last paragpraph. You wrote ‘Here as many other areas of intersex, value judgements come before science.’ I feel that value judgement is only possible if you do that with science. Many people are in favour (or against) certain social and/or political topics while they are completely clueless about the backgrounds of those topics. Voting without knowing what you vote for, is one of the most dangerous aspects of democracy. (disclamer: this has absolutely nothing to do with elections that may or may not be held in any country or any region of this world, including, but not limited to, the United States of America)
So, returning to CE, how are people born with aphallia not intersex?

Heck, I answered that question already. To save bandwidth I will not use Ctrl-C ;) ;) ;)
Groeten, Miriam
PS. YEAHHHHHHHHH, an hour ago the Dutch soccer team have reached the semi-finals of the European Championship 2004.!!!!!!!!!!!!!!!!!!! WE ARE THE CHAMPIONS – uhmm I wrote this email while the match was on teevee… But outside people are having a great party now.

[Shodan]

In every intersex condition there is a link to this process of sex differentiation. CE is a condition that is not linked to the sex differentiation. XY-children with CE had a completely normal sex differentiation: without CE they would have a normal penis.

You've shot to pieces your own argument, thats like saying without AIS you'd have a normal penis.

CE lead to me having abnormal genitals, just like your inability to react to androgens lead to your sex organs not properly developing.

"Cloacal exstrophy is not an intersex condition: aphallia and phallic inadequacy are structural anomalies."
This quote alone would rule out a number of other conditions being intersexed, and many would agree with me, that would simply be untrue.

As I said before, both David Reimer and Shodan share that their situation is not related to the process of sex differentiation.
Correction, my genitals weren't visually identifiable at birth, and doctors were forced to ask the question whether I was a boy or a girl, and sent away for chromosome tests.
Now since no-one could seem to tell what I was at birth, that would seem like I was intersexed, wouldn't it? (Don't answer that miriam, its rhetorical)

Not exactly genital tissue. In true hermaphroditism people have male and female gonad tissue. That can be in the form of ovotestes or the combination of one ovary and one testis.
And in male hermaphrodites, there is XY genes, sometimes testes sometimes not, and ambiguous or abnormal genitalia, Hello???

CAH, AIS 5ARD, 17BHSD and several other conditions all have a (different!) genetic cause. Because of that gene defect hormones are not made by the body, are not converted to other hormones or are not able to connect to a receptor. This can have an effect on the sex differentiation. And again: the ‘atypical genitals’ are only symptoms of these conditions.
And uh, What causes CE? You can't tell me can you? It could be genetic, it could be chemical too, but since you can't identify the cause of CE, you really can't rule it out as intersex can you?
All you have is that silly little quote by a researcher whose clearly not open to changing his ideas and opinions, merely observing.

How is it having the symptoms of intersex, not intersex???
You are no longer voiceing your opinions Miriam, now you are attacking my identity, you are passing judgment on a person you've never met, with a disease you have little knowledge about, all on the basis of some narrow-minded research.

CE is a condition that lead to me being intersex, I had atypical genitals, and Intersex was the result.
Simply accept this.
Or don't
But I'm going to have to request that you keep your potentially damaging beliefs to yourself on this matter.
You're opinions have the potential to not only emotionally harm me but others who use this forum too.

I will not go to war with you on this miriam, but I will fight to defend myself, because my identity is my own, and I will not allow your judgement to control me, nor will I let such insults walk all over me.

I'm a real bitch and or bastard on wheels when I get going, my anger only needs a target.
And I would much rather simply put this issue behind us rather than be harrassed because I know I am something that you think I'm not.

PS. PETER, thankyou for standing up for me, I'm glad that there are others more willing to understand that CE is and does result in a physical Intersex condition.

PSS. If it was F***ing up to me, I wouldn't be intersex, I'd have my testes, I'd have been raised a boy, I couldn't care any less and I wouldn't have to have this bloody stupid argument. And btw, in that photo link: http://bms.brown.edu/pedisurg/Brown...lExstrophy.html
Tell me if thats a boy or a girl!
Cuz that aint no dick and balls, its a healthy serving of bladder, muscle and bowel, cheery!

If its such an issue, I can scan some of my great lookin baby photos, then we can all debate whether I'm a boy, girl or intersex, just like the F***ers who screwed around with me needlessly in the first place!!!
Why do you have to lower yourself to their level?

[miriam]

Shodan,

It seems that you have two personalities; one you use to send me emails that can’t be read by the other members of BLO and another personality that is posting here.

In my precious post I tried to explain the role of sex differentiation for intersex conditions. If you want to read almost everything about sex differentiation, you have to read this article: http://www.contemporaryurology.com/be_core/content/journals/u/data/1997/0100/u1a043.html

You can read whatever you want about CE and sex differentiation and you will see that there is little known about the cause of CE, but all authors agree that there is a normal sex differentiation


This will be my last message about CE. But before I stop writing I want to make a few remarks.

First, I’m just the messenger. I tell you how people in the medical profession think about CE and why they don’t call every genital malformation an intersex condition, that’s all. If those people have another opinion than you have, I would appreciate it when you would give me links to other research and researchers who agree with you instead of the ‘doctor bashing’ and ‘miriam bashing’ you started now.

Second, if you are happy with your own definition of intersex conditions. Well, live your life and be happy with it. But don’t expect others, especially doctors, to change their mind if you only want to attack them.

But please mind your language…
All you have is that silly little quote by a researcher whose clearly not open to changing his ideas and opinions, merely observing.

Reiner and Gearhart are definitely not the kind of people who you can accuse of making ‘silly little quotes’ and they are more open minded than you think they are. They are the people who are trying to convince other doctors that changing XY-children with CE into girls is bad medicine. In other words; you better see them as two of your best friends. It seems to me that you haven’t read their publication, otherwise you would not talk about them the way you do now.

You are no longer voiceing your opinions Miriam, now you are attacking my identity, you are passing judgment on a person you've never met, with a disease you have little knowledge about, all on the basis of some narrow-minded research.
Bullshit! Your statement here is a below the belt attack. And that is one of the main reasons why I won’t discuss CE here anymore.

CE is a condition that lead to me being intersex, I had atypical genitals, and Intersex was the result. Simply accept this. Or don't. But I'm going to have to request that you keep your potentially damaging beliefs to yourself on this matter. You're opinions have the potential to not only emotionally harm me but others who use this forum too. I will not go to war with you on this miriam, but I will fight to defend myself, because my identity is my own, and I will not allow your judgement to control me, nor will I let such insults walk all over me. I will not go to war with you on this miriam, but I will fight to defend myself, because my identity is my own, and I will not allow your judgement to control me, nor will I let such insults walk all over me.
Request granted. But that will not change how medics will see CE. Especially because it has nothing to do with my ‘beliefs’. Again, I’m just the messenger. Be happy with your identity, but there will come a day that you will agree with me. That’s to say… I hope for you that that day will come.

Miriam

[Jules]

Hello Shodan.

Let stop the animosity before it begins, please. This forum has a

moderator. No one, I think, has the right to tell anybody not to

respond to a post, as long as they aren’t mocking or ridiculing

anybody, this is a open forum. If someone has said something

damaging, the moderator can—and has in the past – stepped in

to limit those comments. That has not, it seems to me, happened

here. Instead, an examination of the relationship between two

topics – CE and sex differentiation – has transformed into

misunderstanding between anecdotal (individual) experience,

and data gathered from a variety of sources. What was about

semantics—in the best sense of the word—has now become a

battle between feelings and facts. Look, I know, there is a lot of

argument about what a “fact” is—that however, is semantics in

its less desirable form.

I think a few statements beg to be considered carefully. First of

all, Judgement – and judgement of individuals. Judgement

is about what is “good” and what is “bad”. (Or what is right or

wrong…) Accuracy of description, and disagreement over

terminology does not constitute judgement here or anywhere

else. Several people have gone out of their way – including

Miriam—to make clear that a variety of people with a variety of

viewpoints are welcome at this site.

That is the standard for Bodies like ours—to warmly welcome

people, even when they have information different from one’s

own – rather than to muzzle statements that other people don’t

want to consider.

Intersex is such a new term, who used it first?

Why? And in what context? I myself have only known about it for

a few years. We are all grappling with its meaning, its

boundaries, and its implications. No one is trying to impose

an “acid test” to find out who belongs on this the site and who

does not. We just want to learn more about everything, about

people with bodies like ours. Flatly rejecting any information at

this early stage, no matter how unpleasant the information is, is

a dangerous step for us as a group. We need more info. If we

don’t have these discussions, someone else will – and they will

be the ones defining us. Better to be proactive than passive.

Remember that most physicians and specialists still do not work

with a category of people called intersex, but rather try to isolate

and define each instance relatively separately and independently.

That is one of the reasons why so many of us have had such

radically varying experiences – there just isn’t a lot of agreement

on intersex, despite a lot of research going on now. :confused:

Still, many of us here have had experiences so horrific that they

can only be expressed in expletives. I think many people can

relate to the depth of emotions that brings that type of language

out in us but it’s really important while we work through these

issues to maintain a level of respectful address toward each

other. If we start mocking each other, it lowers the standard of

the group. The moment language becomes anything other than

descriptive in point by point argument, we lose the ability to

support or be supported. When we move to the editorial in

argument, it is no longer argument, but a fight.

Look, I know this is tough stuff, :( but let’s hang in there

together—no matter how different we all are, even from each

other.

Remember, always, that if you are deeply offended by something

someone says, private messages are a REALLY good way

of working out tough topics, and at the same time, making much

closer contacts with other members – who may turn out to be

incredibly important resources and friends-- We get so much

more out of each other by struggling with these issues, but never

letting ourselves turn our backs or crossing the line of hostility.

Okay everyone, it’s good to be angry sometimes – but then we

have to work through the anger and see where it can move us

forward to trust each other, versus where anger simply stops us

in our tracks.

I think Shodan has asked an astoundingly important question in

the last post and I am worried that it will get neglected for other

issues – what causes CE? Wow, what “causes” CE!?!?!

Cause is such a crucial and mystifying thing—even after 35 years,

none of my doctors has been able to explain what caused me to

be born without a phallus (Aphallia, Miriam?) Wouldn’t I like to

know!!! ???? And yet, if I did know – just what would I do with

the answer now? :confused:

This week’s motto: Unity from diversity! The more different we are, the more we must hang in there for each other.

[ptrinkl108]

I have been asked to close this thread by a concerned Bodies member. In putting on my moderator hat, I am seriously considering closing this thread to further posting, but will not do so at the present time. Jules, in the post before this one, made some very good points about member behavior on this forum. I will not repeat what she said, but will note in passing that private messages are often a great way to communicate and build trust among Bodies members.

As this thread is getting very long, I ask that people voluntarily not post more posts to it, but rather start another thread.

Peter