quilts and symbols

[Betsy]

From email:

Hello,

I have been involved with the wholebaby movement since 1960 when a student nurse at the Montreal General Hospital, after witnessing the mutilation of the 4 day old boy I was caring for.

FarReach.org asks questions on the adverse sequellae of circumcision and is an effort at re-education - take a look at the site and comment if you wish - I appreciate feedback.

I am making a quilt on the issue of genital cutting. It will be called "All of a Peace", a quilt towardes universally ending genital cutting. Blue will represent boys, pink will represent girls, yellow will represent intersex babies - at Marilyn Milos' suggestion, and gray will represent men circumcised in adulthood - their report of deprivation is that sex without the foreskin is like vision without colour.

There are a couple of yellow patches
yet to have themes.

Could someone in the BLO organization suggest a book, symbol, something not too complicated which I could represent in a 9" block to include in the intersex section of the quilt.

Thanks very much, looking forward to hearing from you.

Maurene White R.N. BTh, Ba (Medical Anth) Dip. Ed. McGill University

[forza4]

:rolleyes1

[Betsy]

forza4,

I'm having a really tough time understanding your post. Perhaps you would care to explain it some?

[forza4]

haha.. i'm sorry betsy
i suppose i forgot to add some words :doh: :tounge_sm
well about that email.. i think what they try to investigate is a complete waste of time. I mean what does that lead to?

[Sunshine1]

Yellow? Fuck this.
Not allowed a gender? Fuck this.

marginalized this sucks. being maginalized for what Hello ! is a metabolic corectable endocrine condition.

These people could give a fuck that CAH is an adrenal gland condition.

This is coming from a nurse? I might expect this crap from a touchy, feely Ph.D Social Work type.


Why yellow? screw them.

Aimee

[turtledove]

"Could someone in the BLO organization suggest a book, symbol, something not too complicated which I could represent in a 9" block to include in the intersex section of the quilt."

"Not allowed a gender? Fuck this."
-So you deny the existance of androgynous intersexed people?(you don't allow them a gender?). What does intersexed mean to you? If you aren't a 'mixed sex' then you aren't represented by yellow. So HOW ARE YOU MARGINALIZED?


"These people could give a fuck that CAH is an adrenal gland condition."
-where does the e-mail mention anything about CAH? I think there is some symmantic confusion about the word intersex.

"i think what they try to investigate is a complete waste of time"
"This is coming from a nurse? I might expect this crap from a touchy, feely Ph.D Social Work type."

Obvious a quilt with symbols wont make doctors give proper medical treatment for our serious symptoms. It wont sway any of the mutilators either. But what harm can it do. Do you feel it minimizes the seriousness of the issue?

My gut reaction was that, hey someone thinks mutilation is bad, that is good.

[turtledove]

Why are there so many people on this forum who cling to a rigid male/female dichotomy? Why, in this forum, are there so many religous people? Why are there so many non-intersexed people on here? So much self hatred and contradictory comments. How do these people think they are helping the stated goal of Bodies Like Ours (ending genital mutilation). Looks like another waste of time...hooray. What serious person would even bother comming here? Intersexed people need a safe haven, real friends, and real goals/data. Not some hate, ignorance and spy filled waste of time that parallels the offline world.

[Betsy]

I wouldn't confuse anger on the part of the previous poster with what the rest of the people here feel. She's a bad example to use to represent the forum as a whole.

[fraulein_Maria]

behind the words of my (temporarily) changed avatar is the symbol of intersexed. not "the" symbol... it certainly hasn't been voted on that i know of. Anyone who wants to stop our mutilation is ok in my book. they may need to learn alot, but this isn't a bad place to do it.

As for someones complaints....

some of us turned to the image of a loving Godde when our families of origin betrayed us, and mutilated us. if you do not wish to, i will be the first in line to fight for your right to NOT believe in anything.... but please, let those of us with a faith that brings us comfort, alone.

[turtledove]

I wouldn't confuse anger on the part of the previous poster with what the rest of the people here feel. She's a bad example to use to represent the forum as a whole.


What do 'the rest' of the people here feel? Seems there are only 7 people who write in the forum(the hacked forum that was supposed to be fixed by the end of the Weekend-'GASP'). They don't engage me in any intersex related conversations. They don't make any interesting points. Some of them make really ignorant remarks. Some critique my style of writting. None seem to really care about stoping the mutilation, stoping the extreme discrimination, stoping the malpractice, stoping the denial of treatment, or helping those who are suffering and whose lives are being wasted. How many more children are being tortured in this same fashion while jackasses make these joke forums. It should be common decent sense that you don't mutilate babies, you don't systematically lie to people, you don't mock and humiliate people, you don't discriminate based on gender, you don't POISON people, you don't withhold medical treatment,you don't harass people, you don't oppress people, you don't torture people to death. Unfortunately all this is happening and it is sanctioned by the government. The general public is so fucking stupid they either don't know we exist, or make rediculous assumptions. There should be millions of people urgently standing up against this! This is way worse than a lot of the western problems that get talked about on television. This just in...Some people in the army piled some iraqi prisonners in a naked pile...Some people didn't evacuate from a hurricane and died and the city is ruined...Someone blew something up,shot something up, some people who signed up for an army died, some illegal citizens are worried about being deported, some junkie can't get clean needles, someone on disability doesn't have enough money to live on, someone can't afford their viagra, some single parent with no education can't afford to raise their children, joe six pack lost his job at the plant.... HELLLOOOOOO! ALL WESTERN GOVERNMENTS ARE CURRENTLY MUTILATING BABIES, SYSTEMATICALLY LIEING TO THEM ABOUT THEIR IDENTITY, DENYING THEM MEDICAL TREATMENT, PERFORMING PSYCH DRUG EXPERIMENTS ON THEM WHEN THEY BEG FOR HELP,TURNING A BLIND EYE TO DENIAL OF EMPLOYMENT and HARASSMENT, PROTECTING DOCTORS AGAINST LITIGATION,FUNDING WORTHLESS MEDICAL SYSTEMS WITH THE TAXES PAYED BY THOSE WHO THEY TORTURE AND DRIVING PEOPLE TO SUICIDE.

[Meadow]

Turtledove,

Gee, you have been here, what, 5 days?? That's probably not enough time to assess the majority of members of this forum who have been here in terms of YEARS!

While some of your previous post has a modicum of merit, and while some persons might actually be positively influenced by a bloody beating about the head from a picket sign, many others, myself included, choose other ways to educate society. I live in a very conservative area where a typical social reaction would be to shun me. Yet, by becoming involved in community activities, and living an honorable life, I am better able to communicate my position. So these persons, instead of rejection, have welcomed me with open arms. Contrast that approach with marching into a gathering, shouting and being generally disruptive, and quickly being asked to leave, and, in that process, loosing all credibility.

Yes, Betsy was right. Many of us are NOT angry. The world is rarely changed overnight, but rather, though a slow and steady process of evolution.

Meadow

[fraulein_Maria]

who also happens to publically speak out about our mutilations, having endured one herself. I also speak out as a boardmember of the 1 GLBT non-profit i am in, and as a boardmember of the 1 political non-profit i am in... as i have endured mutilation myself.

We understand your pain. We feel the anger too. But we do our best not to take it out ON EACH OTHER. BTW.... do you consider Mexico to be western?
they do not perform genital mutilations. My grandmother, my mother and 2 of my aunts are un-cut.

[turtledove]

[QUOTE=Meadow;11865]Turtledove,


While some of your previous post has a modicum of merit, and while some persons might actually be positively influenced by a bloody beating about the head from a picket sign, many others, myself included, choose other ways to educate society. /QUOTE]

STFU. "Modicum of merit." YOU FUCKING SCUM "choose other ways to educate society" I DIDN"T ONCE MENTION EDUCATING SOCIETY. EDUCATE SOCIETY...

"Many of us are NOT angry."
You make me fucking sick you torture sympathizer

"I live in a very conservative area where a typical social reaction would be to shun me. Yet, by becoming involved in community activities, and living an honorable life, I am better able to communicate my position."
You have stockholm syndrom, fuck your very conservative area. If by honorable life you mean you live as a second class citizen then it is not honorable at all. Yeah you sit there with the grin on your face thinking highly of your honorable life while people you should identify with are being lied to,denied medical treatment, being poisoned.

I'm sick of these motherfuck fakes on this motherfucking forum
Stupid religious morons. It's always the same fucking shit. I make a valid point and some religious tard scoffs at it and follows up with some holy bullshit. If you fucking disagree with something I said then quote it and respond to it. Quite your distraction, time wasting, religious styled crap.

"We understand your pain. We feel the anger too. But we do our best not to take it out ON EACH OTHER."
NO YOU DONT UNDERSTAND BECAUSE IF YOU DID YOU WOULDn'T ACT LIKE A CLUELESS FUCK. I didn't start shit. Everytime I write something passionate and real some fucking religious tard on here trys to minimize reality.

Who the fuck would want to have you people as friends. YOU ARE SO CLEARLY PART OF THE PROBLEM.

Genital mutilations are the tip of the iceberg. Seriously wake the fuck up .

[sparklingdreams]

I too live in a mostly conservative area like Meadow,

And marches would only get the wrong kinds of attention, your looking for. Though I doubt you're truly looking for changes in genital mutilation, but more attention. Which this will be the last I give you.

But I don't feel most here are angry abouts what's happened to us. I certainly am not. I hurt and I've been deeply traumatized by what I ended up going through because of the ignorance of Doctors. But yelling and screaming won't get anyone to listen to you, let alone actually result in any changes.

Second your attitude won't convince anyone, that your feelings are justified. The best response you'd get from any Doctor or parent would be to be simply dismissed (as I will do in the future on all your posts). The more likely is you would be arrested and placed in a mental ward. Your anger seems to be almost on the verge of putting yourself at risk, and even here your words may have already hurt others. So there's the threat toward others and your righteous cause has you screaming from a nut house. Of course I doubt your actions in real life reflect your presence here, for the aforementioned reason.

I respond simply to express why I feel working within the system will make future generations born with any of the D.S.D. are ever to be safe. Not to actually indicate your rantings are worthy of any reaction.

[Mixeduptoo]

[QUOTE=turtledove;11867][QUOTE=Meadow;11865]Turtledove,


"Many of us are NOT angry."
You make me fucking sick you torture sympathizer

I'm sick of these motherfuck fakes on this motherfucking forum

"We understand your pain. We feel the anger too. But we do our best not to take it out ON EACH OTHER."
NO YOU DONT UNDERSTAND BECAUSE IF YOU DID YOU WOULDn'T ACT LIKE A CLUELESS FUCK.

Who the fuck would want to have you people as friends.
Turtledove, Heres an idea! Back off and cool down , Give some thought to what it is that you want from this little corner of the cyberworld. If it's friends, then you have the wrong approach.
I don't recall anyone making me ask to be a member and I'm sure nobody made you join! Most of the people that I read about here have their on problems and are looking for answers from others that might help them get through life with whatever it is that they are dealing with and not all of us are totally educated in all aspects of the intersexed world.
I have lived a life of trial and error, because I was to afraid, ashamed, and really didn't know where to turn for the information that I was looking for. Thanks to the internet and a few good friends ,over the past four years I have learn a lot about my so-called birth defects and why my life has been so screwed up. Even through I am in my late fifties and some people might think my life is winding down, I feel like I have years to go and I hope that I can gain enough education about intersexed people that I will be able to oneday help someone avoid living in the darkness like I did for most of my life.
I don't post often because I feel that I might muddy the conversation and say the wrong thing that would cause hurt to someone else.
Which brings me to the reason for this post. We don't all agree on any one thing all the time but there are ways to disagree without all the foul words and without being mean to others, if that puts me in your religous group so be it, I don't care ,I'm to old to let what others think about me bother me. But I do worry about what some young person that is looking for help with their intersexed problems might think when they come to this forum and read trash like you insist on posting here. I believe that if a person wants respect then they should show respect . You may have said something worth reading in your post but I for one missed the message because I could not get past the colorful words that you injected into your writing. Guess I have said enough, maybe to much, but that is just my way of thinking

It's OK to be different!!

[miriam]

http://www.preflight.nl/diversen/DoNotFeedTroll.gif

Last edited by turtledove : 09-19-06 at 05:26 AM. Reason: more fucks

So you've learned how to write "fuck", now it's time for you te learn about reason and reasoning.

Till then I will ignore you because I don't want to feed a troll (http://en.wikipedia.org/wiki/Internet_troll).

http://www.preflight.nl/diversen/trolls.jpg

[prince....ss?]

For those of you that have accused ME of being ANGRY (sparklingdreams) and others please refer to the posts above….Thank you:wavey:

BTW... I’m not angry, just very passionate!!!

[sparklingdreams]

For those of you that have accused ME of being ANGRY (sparklingdreams) and others please refer to the posts above….Thank you:wavey:

BTW... I’m not angry, just very passionate!!!

I didn't mean to sound like I didn't understand,

I actually understand how you feel, now more than ever, and only meant to express that. In the way I referred to you as being angry, now so am I!

No one and nothing is defining, cutting, stitching, mutilating, or abusing me any longer. No Doctor! No lover! No family member! No therapist! No One!

I'm done being manipulated and controlled out of fear and shame! I refuse to even entertain the idea, I'm stronger than that and know more about who and what I am than anyone on the outside can force on me.

Your anger is justified prince...ss and all I said was that I understand why your angry. Maybe your not, just passionate as you said. And so am I but I now have more than a lil true anger behind my passion. No longer an anger that is masking some fear, shame, guilt, or self-loathing but my own true justifiable anger because of what some in this worlds have tried to do to me, and my refusal to allow them to do it to me any more.

I'm sorry that I didn't express that clearly when I said "I understand why you're so angry". I wasn't in the clearest state of mind, heart, or spirit at that time. But I meant nothing negative by what I said to you.

Where as turtledove is just like totally going off for no reason and with like absolutely no focus or prolly even actually experience coping with these issues she/he/they seem to be so intent on trolling about.

[turtledove]

Peace Ya Fucks
some high calibre work you do
brilliant
wowwy wowwy

[Betsy]

And this high quality work will be unavailable to you, TD.

[sparklingdreams]

In saying,

Thank you very very much Betsy. BTW, if you need any help with just like offline HTML or anything for the redesign of BLO's home page I'd love to help out.

Again thank you for cleaning this thread up, maybe we can get back on topic.

I have no prob with Yellow quilt square, except because Intersex has become known for all of us born with any D.S.D. and also those that see themselves as being a 'special' or 'third' gender, I'd rather see Yellow be there for just Gender-Queer in general.

If they are going to add Intersex based on the meaning of someone having one of the D.S.D. than they are going to need a million colored squares for everyone who is born with any birth defect.

Again just another example of how I feel D.S.D. is completely different from Intersex, and that their not competing against each other (they're only miss-perceived to be within portions of the D.S.D./Intersex communities). And this is also why I work within D.S.D. model but don't identify with the Intersex identity.

I do have to say I have absolutely no problem with anyone who does, I actually completely understand how empowering feeling like someone has found their identity. Whether it's Female, Male, Intersex, or just like whatever. Every now and again I just feel like I need to repeat how I feel about that.

[miriam]

Again just another example of how I feel D.S.D. is completely different from Intersex, and that their not competing against each other (they're only miss-perceived to be within portions of the D.S.D./Intersex communities). And this is also why I work within D.S.D. model but don't identify with the Intersex identity.

You seem to confuse "intersex" and "intersex identity". I don't see intersex -or DSD- as an identity. To me "intersex" is an umbrella term for a group of medical conditions. AIS is an intersex condition and women with AIS identify female.

I bet that in a couple of years a small group of people will see DSD as an identity. One of my concerns with the initialism DSD is that it will not change anything. In about 5 or 10 years from now we will need a new word for it because it will be as charged as intersex has become now to some people.

Groeten, Miriam

[Wyn]

although, I would suspect that some would take issue with it.... how about a snail? Yah...kinda SLLLOOOOOWWWWWW ...but, I know that Emi has used this as an example. Just the same, I do understand that not everyone who is has IS, is a 'hermaphrodite'... nor would want to be classified as such. This truly is a hard subject to 'classify' - IS covers Many different conditions and their numerous outcomes. I suppose the classical male/female symbol, melded together would also be a potential 'symbol'. And with that thought...perhaps a simple Peace Sign would be appropriate - perhaps with the afforementioned female/male symbols included? Anyway, just a few silly thoughts.

[sparklingdreams]

You seem to confuse "intersex" and "intersex identity".

I'm not like confused,

It's just to me Intersex, when just said (or typed, written, or whatever) alone stands for more than just the conditions. When said as "Intersex condition(s)" I actually have no real problem with the the word or term.

As for D.S.D. becoming an identity, I don't see how that would ever be possible. I mean sure having one of the many D.S.D. may become `part` of one's identity, but not an identity on it's own. Basically just cause I mean like as an acronym (D.S.D. stands for Disorders of Sex Development not Disorders of Sexual Development, for those who may be confused), I can't imagine it becoming an identity, it wouldn't make any sense and would make one just sound like a complete goof saying something like "I'm Disorders of Sex Development", that's just like totally laughable, were as saying "I have on of the Disorders of Sex Development" can be part of an identity, but not one's identity label itself. Not to mention D.S.D. doesn't have the politic & social undertones the "Intersex movement" has come to include.

Now these issues with the word Intersex, becoming more than just meaning Intersex conditions, has actually happened because of 'outside' influences, more than by those of us who actually live with any of the D.S.D.. Including those of us doing activism focused on changing how we're medical (mis)treated. I actually feel Intersex has been turned into a `movement`, so to speak, by feminists, LGBTQ, and other groups. While I'm sure they meant well I just think they forgot to ask us :razz: not to mention the confusion about the `tongue in cheek` statements made about us being a third gender and etc were take literally. So the meaning, and focus, of Intersex went from Intersex conditions to way yo many things. And at this point without adding the wording "condition(s)", one never knows what someone else is actually hearing. And when I hear Intersex alone I hear all of the different things it's become.

Again why I'm in favor of the Disorders of Sex Development model. But it's not just for clarification. I'm in favor of the D.S.D. model for change for many functional reasons, ways in which I can see it working toward change more effectively. I've already began to see these benefits in action.

[sparklingdreams]

Peace Sign would be appropriate - perhaps with the afforementioned female/male symbols included?

Here is my idea for what it's worth,

It's kinda hard to describe but I'll try. Imagine the female (Venus) symbol cut vertically, and the male (Mars) symbol cut diagnolly from bottom left to top right. Then connect the two parts, but leave some of the blank area (maybe even slightly rotate the halves). The between the two halves add simple "stitches", with the blank spaces left between both halves, their easy to see. Then place two scalpels over the combined images, with the stitches, in an X kinda shape. Then over lay that with a final red circle with a line through it, like the no smoking, talking, and etc image.

That's my idea. I could put together a PNG, JPEG, or other image together pretty quickly if any one is interested, or if my description makes like no sense.

[Wyn]

well, here's one suggestion....a quick little ditty

[Sunshine1]

As you can tell, I'm not much for this type of stuff and that is just me only one persons opinion. I don't like it becasue it detracts to me from the orginal conditions and why are for example poeple with intersex conditions being seperated out of male and female when we do fit in those genders - cah is an adrenal gland disorder like other people have thyroid disorders. I'll add to the suggests just the same but for some of us surgery is needed sooner or later. No period was going to fit through what I was born with.

You could sew into the the quilt anywhere since intersex conditions are all along the gender spectum and not to be confused with Jimmi Hendrix All Along the Watch Tower - these words:

1) Is this really nessesary?

2) Ask me before you cut.


I'm not really much for these types of displays because I think it removes it from people ...each story with intersex condition is different. Also in as far as CAH goes - I see that the ideas about genital surgery are changing case by case and that people in the medical field are tryingto make things better but for me a quilt is something that keeps the past going where today they are trying to change and grow from it and this is with the intersex condition CAH where not everyone born with it would even fit the medical description intersex. I know the surgeons are recommending to leave enlarged clitorises alone but do feel that higher on the prader scale that early surgery is a good call.

[sparklingdreams]

As you can tell, I'm not much for this type of stuff and that is just me only one persons opinion. I don't like it becasue it detracts to me from the orginal conditions and why are for example poeple with intersex conditions being seperated out of male and female when we do fit in those genders...

I know the surgeons are recommending to leave enlarged clitorises alone but do feel that higher on the prader scale that early surgery is a good call.

As for your first part,

I totally agree. I don't feel we belong on this type of quilt, any more than any other person with a disease. If they're going to add a patch for those of us born with any of the D.S.D. than I would love to see them add a patch for disabled people, a group I belong to as well (but it's not my identity), like the standard wheel chair symbol. What about people with A.I.D.S.. They are discriminated against just like those of us with any of the D.S.D., disabled people, and many other groups of people in this country. I'm like totally in favor of a L.G.B.T.Q. quilt if these groups wish to use this to raise awareness.

Perhaps instead of a patch we should design our own quilts'. With patches for each one of the D.S.D. and maybe even for the different levels of each condition.

As for your last comment. This may be true, for example ova-testes, were tumors are an extremely high risk factor. However at any level of the Prader scale (1-5) (http://en.wikipedia.org/wiki/Congenital_adrenal_hyperplasia_due_to_21-hydroxylase_deficiency#Virilization_of_female_infants) I am completely against surgical intervention. At level 1 there is not even enough of an appearance issue to talk about destroying one's clitoris. At level 5 no surgery is needed either because all outer appears of one's genitalia appear male. So in these cases I agree that assigning the birth sex as male simply makes sense, however this labelled sex should not be forced on any child if this turns out to be an incorrect assignment.

At any other level 2-4, there is no reason to perform genital mutilation. I for example was born somewhere around level 3. I can assure you that these surgeries were not only unnecessary, but wrong, and were not even completed, because of medical complications, as a result of my C.A.H.. Thus my genitals were, and are, far less normal than they were at birth.

Even at level 4 urinary obstruction & infection are hardly reasons that surgery could be deemed necessary for any reason other than ideas of normalization. Urinary tract infections are something all woman have frequent issues with. So were as now of days (according to your research?) surgeons may have left my vagina alone. Removal of ova-testes are not for just some kinda normalize but for obvious health reasons. There are no rational reasons to normalize any child's genitals, regardless of even at Prader level of 4 (which only applies in cases of C.A.H. BTW); these mutilations are nothing more than a blatant disregard for the child's human rights.

Any kinda normalization surgery should be held off until every child born with any of the D.S.D. has the ability to decide what is right for them. Because where as the surgeries can be waited on, the trauma they can, and often do, cause cannot be undone.

[Sunshine1]

Hi Dreams,

Maybe you are writing about CAH and another condition on your thread because being born with ova-testes isn't something related to CAH, an adrenal gland condition.

CAH doesn't cause blending of ova-testes but may cause large, ambiguous, or male looking external genitals w/ no testes in a portion of girls born with CAH but inside are only regular internal female organs thus external surgery to correct what the enzyme missing adrenal gland did. When or if that surgery should be done is another story. I needed it done by at least eight to be really ok for the period blood to flow and come out.

Ova- testes is another type of intersex condition and ISNA does have the different types of conditions explained on their site and I put a thread in the CAH section here that has many links to explain what CAH is.

I was born prader 5 and no raising me male doesn't make sense. Please don't assume about me or anyone. They do recommend leaving the enlarged clitorises alone these days (Endocrine consensus ) but it is a recommendation that is in the end the choice of the parent ..yes the parent that needs to make a choice and some parents aren't bothered, see nothing wrong w/ a large clitoris whereas back in the 70's/80's more might of.

People that have enlaged clitorisises could really appeal to parents thay hey I grew up with this and I'm fine. Yes, I do feel that enlarged clitorises should be left alone for the owner to decide but I can also see where those parents are coming from too and they want the best for their child.

As for a girl with CAH born a prader five - male looking external genitals with no testes? Surgery is in there somewhere and please don't make me male because of what the adrenal gland did.

Many girl babies born prader five go on to have their husbands children and by you wanting us to be rasied male? our chance of fertility is taken away ...thanks? but I'm not for early,early surgery either.

Don't make me male as a result of what lacking cortisol did. Studies have shown that a small number of women with CAH do wish to trans to male but this isn't based on the degree of virilization.

Please ask me and/or wait a little to see what side of the fairway I hit to. I was never suggested into a gender and gravatated to the one I was meant to be in. Gender isn't a big deal for me anyway. I can have anything I want out of any gender.


The surgeries that I had were done at age five being the clitorectomy which was the best at the time period for my degree of virilization, urethra plasty, and vaginopalsty which the last two working out fine except for the vaginal stenosis that made pap smears difficult.
_________________________________________________________________
For me surgery was coming because the period blood wasn't going to be able to fix thru what I was born with and that is a medical reason for surgery.
________________________________________________________________

The surgery was looked upon in the same way as someone that has a cleft palete to fix, or a hand defect or a heart defect ect.

I talk to my ped endo and the ped surgeon that did what they thought at the time was in my best interest and it was for the time period. Each case is so different and they were very open to different options for different cases in this day and age.

I liked what I wrote for the quilt :

1) Is this really nessesary?

2) Ask me before you cut.

Quilts are fine as a whole really fucking fine ....lol ( one swear word, I did good) but they lose for this in that the specific conditions aren't considered.

When people keep calling surgeons mutilators that people turn a deaf ear to all this and it leads to fractions that don't solve anything. No doctor goes to school to mutilate someone. Sure, are different medical procedures done at a certain time something that needs to make better or expand upon? yes. Have you ever really sat and taked with any doctor ..... got drunk and partied with them....you bought me a yagermister? thank you because then you would know that they want to make things better too from the inside and for me just one fucking idiots opinion here, the qulits only are a red flag of telling them they suck and causing division which grinds help to a stand still.

[sparklingdreams]

...being born with ova-testes isn't something related to CAH, an adrenal gland condition.
...
I was born prader 5 and no raising me male doesn't make sense. Please don't assume about me or anyone. They do recommend leaving the enlarged clitorises alone these days (Endocrine consensus ) but it is a recommendation that is in the end the choice of the parent ..yes the parent that needs to make a choice and some parents aren't bothered, see nothing wrong w/ a large clitoris whereas back in the 70's/80's more might of.



I'm sorry I didn't clarify ova-testes, and that you missed the most important part of my Prader 5 statement,


This may be true, for example ova-testes, were tumors are an extremely high risk factor.

At level 5 no surgery is needed either because all outer appears of one's genitalia appear male. So in these cases I agree that assigning the birth sex as male simply makes sense, however this labelled sex should not be forced on any child if this turns out to be an incorrect assignment.


When referring to ova-testes I was not referring to C.A.H., I was simply showing the only time when and surgery related to any of the D.S.D. would be needed. Ova-testes are most frequently seen in AIS girls, which I prolly should have mentioned.

As for Prader level 5, I only said that assigning the birth sex as male simply made sense, and that is because there are no signs to give Doctors' or parents' any reason to question otherwise, many boys are born with testes that don't descend until puberty. And at birth there are no signs that a Prader 5 girl is a girl. But she should be allowwed to express & and live as her correct self once this is something she's able to do. However I did say that this identification should not be forced. I stated what you stated, and I'm sorry you missed that part of my post. I'm sure feeling I was saying you should be forced to stay within that gender must have hurt. I hope you realize now that I said quite the opposite.

As for high level 3 and level 4 surgeries. I'm fully aware that these decisions are often left up to the parents'. However they usually make these decisions without the accurate knowledge & awareness. More often surgeons, even now. most often present these high level 3 & 4 birth defects as needing to have surgical intervention. I was making the point that surgical mutilation are not needed.

Again I'm sorry if I wasn't clear enough in my statements, I actually said what you said. Maybe I should bold when making a point, however my style is, and will remain, to use italics instead. That's just my style, I'm sorry it wasn't enough to grab your attention, I hope I didn't trigger anything to painful & and I hope you can now see that we actually agree.

[miriam]

Ova-testes are most frequently seen in AIS girls, which I prolly should have mentioned.

That would be a new kind of AIS. Sorry, it is not one of the clinical features of AIS.

Ovo-testes are most frequently seen in... people with ovo-testes.

http://www.isna.org/faq/conditions/ovo-testes

Groeten, Miriam

[Sunshine1]

AIS isn't ovo-testes either and thanks to Miriam for providing the link.

You are entitled to think that I shouldn't be allowed to have surgery to allow for period blood to flow and the blockage from that isn't a medical emergency.

I have my medical records from 1970 and there are ways to find out gender when no testes are papable. I can dig out the medical records some time for you but they did X-rays, ran dyes through, and did smears - they were really disapointed that I wasn't a true hermaphrodite.

CAH is one of the seven conditions that are covered under/tested for during new born screening so yes with respect their are ways for the medical profession to test for this condition or gender with this condition if the child is virilized and no testes papable. Baby has CAH but no testes are papable...might then be a prader five girl and we need more tests. In this age they have ultrasound and not sure about that in my day but we did have the x- rays and other tests.


I like your posts and do think you have a great attitude but Yes, parents are given accurate knowledge and awareness. My parents had medical libraries at their disposal and parents today have even more info caresfoundation.org has a great page about surgery issues minus the cartoon that isn't my favorite but it does discuss the pros and cons of surgery. Parents are told the good and bad - I've talked with them. Many make the decision to leave the choice of clitoral surgery to the child later but do have surgery to fix something with the ureathra from constant urinary tract infections pooling from the birth defect formation.

The endocrine consensus of I believe 2004 recommends waiting for surgery enlarged clitorises and also some vaginoplasties. As someone born a prader five the surgery for me was done at age five and that is pretty ok (technology at the time sucked) and at age eight might of been fine to but needed to be done for puberty that came on time at age 11 to allow for period flow but it seems that you would rather I have a blockage and die.

Please read the caresfoundation page on surgery. It really is good overall.

This day and age because of works from the ISNA, Emi, and Betsy ....parents are told pluses and minus then they have to decide. Some parents on their own don't go for early surgery either because externally the condition isn't a big deal and they are more concerned with the medical management for the adrenal gland. The place where I had my surgery some 30 years back doesn't recommend surgery right away either. Each case is specific.

[Kailana]

I have only had the timeto read some ofthe beginning post in this thread. I wanted to say that your criticism is quite harsh. Each of us is here for are own benefit, or to help others who have experienced some of the same traumatic crap we have had to deal with. Some are here for answers for there children, friends, or other family members. You shouldn't knock what support is here. I have found more strength and peace of mind threw this sight than any other.

And you should know that Genital mutilation is not the only thing that intersexed children are subject too. There are many Doctors who also promote terminating intersexed fetuses so lay off on how we are not doing anything to stop the gender reassignments, i dont blame you for your thoughts. i have been angry too. Fact is i usually am. But with help and support from this sight at least now i can talk openly with people. i dont hide what i am. Fact is i tend to be a bit repetitios about being intersexed/transgender (me).


As for some of the other stuff i read toward the end there about the ovatestis and cancer, thats a load of crap, biggest danger is streak gonads. Then to a much lesser extent fibrous tissue. And if any damn Doctor or surgeon tells you otherwise its a load of crap. Too If you happen to be wondering : i happen to think that surgery too remove ovatesties is to stop the miraculous conception belief? <-- unproven self theory- Most medical journals mention that is physically impossible for a human to make themselves pregnant. I however don't believe it. i offer no proof, i have no evidence, but what i do have is question= "Why cant a true hermaphrodite with both gonads make themselves pregnant? An egg and sperm cells dont really care where they come from. They do what they do because thats what they are supposed to do. Now then the body in question may not be able to carry, or carry for long/. But from a genetic point of view. eggs are eggs, sperm are sperm, the stability in question of such a mating may be in question. Still why wouldnt uit be possible for such a union to happen is the plumbing of such an individual just happened to be connected so that they can meet.


And yah that s me, and it would exp[lain so much of why Doctors seem to be mocking me over and over again.

just a few comments and a few questions for the board

[sparklingdreams]

That would be a new kind of AIS. Sorry, it is not one of the clinical features of AIS.

Sorry about that Miriam and Sunshine,

I was mixing two health risks. I know in some cases of AIS, as mentioned on the same page you linked to, http://www.isna.org/faq/conditions/ais & http://www.isna.org/faq/conditions/ovo-testes. Both conditions have an increased risk of gonadal cancer. So I'm sorry I incorrectly combined two kinda symptoms. To much information over load? Or maybe it's just because, sadly, I haven't used a lot of my D.S.D. (Intersex conditions) knowledge in three years since my Generalized Dystonia has stopped me from doing basically any speaking to parents' or Doctors'.

I'm sorry for the mix up, and I also need to correct my original statement that only ova-testes was the only one of the D.S.D.'s that may require surgical intervention. A boggled brain had me combining the two conditions, because of their increased risk of cancer. So to correct my original reply ova-testes and AIS are the two (and separate, again I'm sorry for blurring these lines, and I do truly mean I'm sorry) out of the D.S.D. that may require surgical intervention for reasons beyond `forced normalization`.

I'm not completely brain dead, some times I just post like it online :interesti

[sparklingdreams]

You are entitled to think that I shouldn't be allowed to have surgery to allow for period blood to flow and the blockage from that isn't a medical emergency.

Dearest Sunshine,

I'm sorry for whatever I said that made you feel that I felt you shouldn't be allowed to have surgery. You have the right to correct any incongruities you feel with your body. All I've ever tried to say is that as an infant there is no reason for surgical intervention.

As soon as any one living with any of the D.S.D. feels they need any corrective surgery, they should be allowed access to it. And it of course should be provided by medical coverage, including even medicaid for children in that position.

However in infancy I'm against any genital surgery. Saying a Prader 5 C.A.H. infant should have surgery to make what appears to be a normal penis, is like saying a girl with AIS (PAIS if you want to compare Prader 5 to some type of AIS) should have masculinization surgery at birth and then forced steroidal injections. And this would be just purely evil.

Infant surgery is just wrong. However as soon as any person born with any of the D.S.D. is old enough to have a say, and they desire corrective surgery for their birth defects, then they should be allowed to have the corrective surgery they desire. Regardless of chromosomes, which of the D.S.D. they have, or what gender they were raised as. As soon as any one with any of the D.S.D. can, and has, decided for themselves than I feel they should be allowed to have the surgeries they need and be allowed to live as they feel.

But for anyone born with any of the D.S.D. I feel surgeries should never be performed while they are still an infant! I can understand why you may look back and wish they would have performed some form of surgery while you were an infant. But if they did this for any reason it would be based on your chromosomes, and if applied that rule to everyone born with any D.S.D., then far to many A.I.S. girls would be submitted to torturous genital mutilation. And their are Prader 5 XX boys who do feel completely male and live happily as men, though they require hormones.

Sadly there isn't a way to say "surgery is good here, and bad here." Not until the person can express their own feelings on who they are. And at that time, and only then, I'm 100% for every child, teen, or adult (whenever they find themselves) being allowed to chose to have whatever treatment they need, surgical and otherwise, even if they chose to have no surgery.

But as an infant one cannot speak for themselves and should be given the human right to have their body left alone until they can express who they are and what they need, and only then.

[Sunshine1]

Dear Dreams:

Please don't assign someone born like me male at birth. It doen't make sense like you wrote.

Please don't assume that I think infant surgery is terriffic either, I wrote also that the endocrine consensus of i believe 2004 recommends leaving enlarged clitorises alone. Many parents decide to against this clitoral surgery but do feel the surgery is needed for vaginoplasty at the time and this could be compare to being born with a cleft palete. The www.caresfoundation.org does have a great surgery page on this but the cartoon is a loss for me.

Because of the lack of cortisol and excessive androgens there are some born with CAH that end up with UTI that pool inside and surgery does help with that. I would hope that surgery in this type of case would be ok with you.

I had surgery at age five and thought that was good for my case which was done to correct what a defective adrenal gland did and could be compared to fixing a heart defect or a hand defect and so on... Surgery at eight might of worked to but really they did the best at the time period my goash it was the 70's and in this day and age technology and what is shared with the patient is different.

I had x-rays done, genitograms dyes done and so on ..surgery wasn't done like how you wrote "based on my chromosomes" You're again wrong because it is so much more than that.This is a fixable symtom from an adrenal gland condition.

Yes, a small but not insignifficant number of women with CAH do transition to male later on but do not base this on the degree of virilization because studies have been done were the small amount that do trans aren't usually the ones with higher virilization.

I wasn't forced into a gender but rather I am the gender I am so please don't make me a male from birth because that isn't right. Gender really wasn't a big deal but correcting the adrenal gland was to help the rest of the body system function properly.

They aren't mutilators and did the best at the time period. They are listening know and when is credit going to be given for that?

Each case is very specific as each family. Many have surgery done for just the vaginal canal with other surgery being held off and some hold of on surgery to later.

CAH is one of the seven tests for newborn screening and before that boys that have CAH were of thought to of died from SIDS.

[fraulein_Maria]

[QUOTE=Sunshine1;11939]Dear Dreams:


Because of the lack of cortisol and excessive androgens there are some born with CAH that end up with UTI that pool inside and surgery does help with that. I would hope that surgery in this type of case would be ok with you.

>>> as a XX'er with CAH, mother of an XX'er with CAH, perhaps i can shed some light here....

my mother and 2 of her sisters, have CAH and are uncut. they somehow managed to have husbands and children just fine. :)

i was cut. its been a nightmare.

i had a daughter. the doctors wanted to cut her.

i asked...

Can she urinate? [yes] Can she deficate? [yes] then leave my daughter alone!

Had she been unable to do either {and sometimes, one of the other is made difficult} i would of course had consented to surgery.

she had/has a vaginal opening, so making one to let out mentrual blood eventually was not an issue. But had it been.....

tough call.

my medical self says that its easier for the doctors and easier for a child's body to recover at a younger age.....

the mother in me says "wait, there is no rush"

the child in me says... "its my body; and besides, they might have better techniques by the time i need it."

leave her be. she was/is/ will be loved all her life, just as she is :)

would that we were all so blest :)