View Full Version : I came hear to hopfully meet friends
Good day. I posted a thread hoping that other open-minded people can gain a understanding that not all intersexed people look at being raised the opposite sex as such a bad thing. I see myself as a person who has both masculine and feminine traits. The masculine side of myself is how I was born, genetically male. the fem' I learned from classical conditioning, being raised a girl, and possably the effects of female hormones. The life of the entersexed is a tough road, many parents will have gender issues with their intersexed children regardless of surgery. It can be just as tough on the parents of intersexed children as it is on the child itself.
I can understand why a lot of intersexed people don't like the idea of altering the babys. The tramma from surgrey can have a long lasting effect into adulthood, but so can the effects of the culture of today when genitla is way to far from the normal looking male and female parts. It is also true that if the choice to resign isn't done quickly, the feminine looking process that happens when you remove the testes doesn't always look right. Some surgerys done by doctors that are untrained, leave people's part looking butchered. Here is where the voices of the angry inersexed come out, and I understand them. Any penus of any size should be left untouched, the same for clitorises, doctors well trained with the intersexed know this.
M. G . H. hosptail in MASS has a great intersexed program that had helped so many intersexed people go about happy normal lives. Some with surgery, some without.
I was looking at my records and discovered by accident that I was a boy at birth, and I was shocked to see a picture of me at with two testes hanging between my legs. I sat there and read my records with tears going down my eyes. Yes, I felt a loss because the right to have children was taken away. A loss to decide myself what I what to be. And for my parents, who had know idea what to do. But I do agree, as a boy with no penus, something had to be done.
Many of the genitic anomalies found in the intersexed have been greatly researched in Mass Genral hosptail and they do follow up the progress of the intersexed. If it is off the sexual scale from boy or girl they do know how to operate, leaving sexual sensitivity intact. Far more intersexed adults have a chance now at fullfiling sex lives then ever have before, because of the care, and love, and understanding given to them by well educated doctors trying to understand something that is very delicate issue. I don't see doctors as people who can't wait to cut up the next inersexed child so they(the intersexed) will be angry and untrusting with the medical world. I see doctors as "human" people, some who are well educated make the right choices, and some who make the wrong choices. "I'm terribly sorry if the wrong choices have been made for you."" My ears, and heart is open to you."
Still, A neo-nate at that stage does not know what gender is, and can't possibly at that age decide what sex it should be. The parents my also be vey bias depending on the sex they want to have for the child. We should praise the doctors that do make the right choices, getting intersexed people into the right therapy, giving them surgery, at the right time if they need it, and helping parents understand that their intersexed children are unique and wonderful human beings who need there love and support; boy or girl, or both!
Myself, I was always a tomboy,who loves and needs the friendship of men but falls in love with woman, and likes have sex with woman. But that doesn't make me any less a person, or the woman that I know I am. The one thing I must add is that sex for me is visual. This is just how I think, but the reason why we are not all race of bisexuals people, boy or girl, able to have sex with gays, streights, and hermhaphdites, is because we all hold unquie what is sexualy attractive to us. What looks good to the eye,and gets us sexualy aroused, or what might look good in the mind, is still a visual process. My eyes had proved it to me without a doubt. People with ambigous gentails are no less whole people, but they may lack the gential visual cues that would allow another person to look and there gentials and get aroused. I say this because I must think( or look at) the flower like shape of a vagina to climax. It is very visual to me.
I passed through A skilled surgan who gave me a clit, without disrupting my sex nerves. At seventeen I had vaginal reconstrutive surgery taking skin off my buddocks. Yes, it was very trammatic, and at the time i had to keep it secret. My intersexualty is somthing I'm proud to have survived, I'm intact and whole as a person. I may need more surgery, and that is the trial of my intersexed condtion. doesn't mean I have to like it, but my body is only a tool of my soul. It houses the mind that I carry. I have learned a lot more about how this tool can be used, because of my inersexed condition, then had I been born one gender and stayed one gender.
In closeing...I can't see how I could have been happy as a feminine man with no penus. I can't see how it would have been better letting me decide my gender as a child. When children, up to the age when it they could decide their sex, might not know the diffrence bweteen fantisy and reality. Or waiting untill adulthood,when by then, I would have been firmly seated in the male role and the idea of being a girl who have been terrible. What is realy the less of all the evils? honestly???
I will stand behind any entersexed person who does not like the choice made for them, But we as intersexuals can overcome this. I am as woman, as any woman born XX. Although i fit into more normal visual limits now, My gentials are still somewhat diffrent then anybody's eles. I climax fine and I'm proud of that.
Please tell me other intersexuals can understand it is not hopeless.
We can choose life. We are all unque, and while bad surgins may make wrong choice for intersexed people who deserve much better, some inersexed people are helped by it, when they run into doctors who care and understand, and life can as wonderfull as a journey tht God had indended it to be.......................:)
Hi Jules,
Welcome btw...
I am curious about something you wrote.
Do you think it is our genitals that define our gender? Or are they separate issues?
Could it be just our genes that define our gender?
Or is it our brains?
By no means are the choices above inclusive of everything that make us whole as people. I am just curious as to what makes us gendered, or even intergendered people?
Betsy
It is of my opoion that trangendering has to do with something that is behind why femine and masuline "people" are attracted each other. What if we all went blind. No more sexual visualtion!!! Now lets take away the hands> Now you can't feel your lovers touch or be touched. Yet we still had to find someway to continue to propgate and get togeather. The Male mind would still seek the female mind, and vise-vera. why..;) because the male (streight male) needs to bond so to speak with the female traits that he lacks in his maculaine mind. you tend to find that the most balanced people are those you pick partners oposite to their gender behavour. The human brain. needs this balance (guy with girl, butch with fem', so on and so forth) It seeks it out! When we are in the womb, before we are even given our sex organs, the gentics ((DNA)) of humans know's this. and split the brain so to speek. One half half fem' one half masuline. in theory only one half of that side will grow neuorns to insure that we will seek out what we don't have(Dave Webber)(the Princable of Neoron Science p 367) but in trangendered people they have the neuron reseptors swiched or double wired in their brain so not only do they feel that they are the wrong sex they "Think IT!!" This is diffrnent then cross dressing, transexualls or intersexed people. it almost like having the wrong brain in the right body. Some cases surgry and resighnment helps. Others(sadly) swich back again after the sex change. It is much more complex then just hormones which seem to govern your sexual orentaion.
Is your gender you gentials GOD No! What about me! I almost had no gentials! featureless.I like sex with both girls and boys. I spent 11 years with a man, I want to be with a girl because that is what "I choose" not because I had testes Although they have found a link between gay girls, tomboy behavour, and high levels to testortsone in mothers womb (Parenting magizine, September)
Jules,
I don't really see my questions as transgender ones. I was thinking more along the lines of society not willing to accept us in the bodies we were born in. For example...can a girl really be a girl if she has a big clit? Can a boy really be a boy if he has a micropenis?
The way I see it is that society and medicine spends an awful lot of time trying to make our genitals fit our gender, whether real, perceived, expressed.
The lines between TG and IS can and do get blurred, and I agree that they are separate. Yet, they are very small/opaque also. The difference as I see it is we see many problems arise from surgery, and some TG people often see surgery as their salvation.
Betsy
Hi Jules and Happy Holidays,
Yes I at times I haved looked beyond the what ifs.
I am IS .
I have at times thought about getting my gender fixed but why.
I had gender augmentation at birth. LOL looky where that got me .
Raised male and then turned out to the world at 18 years old.
What a ride this has been .
you had spoke of Native Americans being of female gender.
reminds me of a story .
Native American IS were nicknamed Berdaches a term given to Native Americans IS individuals by the French.
These Individauls were given very high status in these tribes.
Medicine , Religion and Heads of these tribes, ie Chiefs. Az1
Have a nice day
Muhoe
always looking outside of the box.
I don’t know who brought this thread back to the top but I am
appalled at my bad spelling! How could anybody take my writing
seriously with spelling errors in every sentence? Interesting
enough while my writing style has changed some, my ideas
behind intersex are almost the same then as they are now. I had
very liberal views about surgery then, now, I am more aware of
the damage early surgery does, I still feel that the best choice
for me was early surgery because I would not want to have gone
through another genital operation that I would have
remembered. The surgeries I had where bad enough, without
adding one more to my memory bank.
Betsy said:
------------------------------------------------------------------------------
I don't really see my questions as transgender ones. I was thinking more along the lines of society not willing to accept us in the bodies we were born in. For example...can a girl really be a girl if she has a big clit? Can a boy really be a boy if he has a micropenis?
------------------------------------------------------------------------------
I think I can answer this.. two years later :p
When is a clitoris not a clitoris?
When is a penis, not a penis? I could answer it like this: When is
your hand not a foot? If you were born with toes an ankle and a
heel at the end of your arm, would you still call it your hand? Or,
would you say that you were born with a foot-like hand? Or,
would you not put any name to it and just say that your (--?)
came out a little different? Let’s go back to Clitoris. How big does
a clit have to be before it is no longer a clit? How small can a
penis be before we can no longer call it a penis? If a penis is
small enough can IT be called a clitoris? Is it unreasonable to call
a large clit a penis if the clit is the standard size (or larger) then a
regular boy's penis? Could we say that we couldn’t call a large clit
a clit if.. it is a penis, or something else?
Does society have a problem with a girl with a penis? Well, even
if society did not have a problem, I think a girl with a penis, might
have problems finding a partner. Most (straight) men don’t want
a penis on there partner unless they have the penis. Most gay
woman like woman genitalia, if they wanted a penis in their sex
life they would be straight.
Most gay men, although they like as many penises as they can
get, like their penises attached to men or they would not be gay.
So the catch is this, even if we had our unique bodies as nature
made us, finding a sexual match for us could have been just as
frustrating as finding a match with our surgically altered genitals.
Even bisexuals tend to go for standard gentials.
Clit or penis? Who has the correct name for such anomalies
anyway?
:rolleyes:
hi jewls, yer speln aint whut madders , yur point was understud. beeech
Anyways, as long as its a debate over how to treat IS rather than what is... I'll participate
Personally, I think we should be given the choice when we're younger,
Heck, I've been told that I need to make a decision some time (yeah right!)
What makes it any easier learning about it at 18 than learning it b4 you get on the hormones and stuff?
(at least, thats how I wouldve liked it)
It should be our choice, theres too much of a PLAYING GOD factor involved in people making a sex choice FOR us.
Thats just my opinions anyways!:D
Hello Shodan!
-----------------------------------------------------------------------------------Posted by Jules:
I can't see how it would have been better letting me decide my gender as a child. When children, up to the age when it they could decide their sex, might not know the difference between fantasy and reality.
------------------------------------------------------------------------------------
Children have more distorted view on life then adults do. In
fact 'psychologists ' are trying to prove now that people are not
mature enough untill they are twenty eight to realy reflect back
on if there choice are right or wrong.
A child, given the huge gravity of choosing to be a boy or girl
could make a far worse choice for themselves given their
maturational understanding of their choices. Al least an adult
might understand the pros and cons of choosing to be a male or
female based on what sexual parts you have or don't have. The
issue in having a adult decide on your gender lessens the chance
that a wrong choice will be made vs letting a child decide their
sex when they cannot yet grasp the whole picture due to his or
her age and lack of understanding due to their age.
claraJane
07-11-04, 06:57 PM
Jules,
You make some good points but....
It's not really a matter of whether or not you "let" a child choose their sex. It's whether or not you do something that condemns a child to trying to be a sex that they're not. Surgery is very difficult to reverse.
What is the problem with letting a child find out where the boundary between fantasy and reality lies? Why do they even have to make a permanent choice when they're young?
In my particular case, it would have been easier on my parents had they declared me female early on. And perhaps easier on me as well. But, instead, they gave me a gender-neutral name, told me I was a boy, and then quietly ignored the "problem" until I was in college.
As soon as I realized that I really did have the option to change my legal status there wasn't anything to decide. I went through with surgery because I wanted a sex life and because the surgeon had to sign my legal papers.
Had I known when I was four that it was ok to change my status, had I known my parents would support me, I'm not sure I would have done it right away. But at least I wouldn't have as many "what ifs" to think about today.
I may sound like a broken record but, I really believe that the best way to tell the sex of an intersex child is to ask them.
Kind regards
j
Hello Clara Jane.
I do wish I would hear more from you. You have been a member
for quite sometime and at times I do wish to hear your views on
the many subjects that get posted here. Often times I have
asked myself during some really tough posts, “Where is our
Senior Member?”
Back to the topic:
____________________________________________________
ClaraJane said:
What is the problem with letting a child find out where the boundary between fantasy and reality lies? Why do they even have to make a permanent choice when they're young?
____________________________________________________
My answer has two parts.
How can a permanent choice not be made?
Lets say at age five you are told that it is your choice to
be and act and dress like a male or female. A child chooses
female. Then at age eight after finding a circle of male friends that
a child feels more comfortable with, they decide that male is really
the correct choice for them. Unless they are being home taught,
classmates at school are going to give them quite the hard time if
they transition and how does a child 'transition'?
In fact they may have to change schools and reapply as a
different sex, many times! :( What if the parents don’t have the
money or emotional stamina to keep changing schools every
time their child feels more male then female?
Most children hate changing schools anyway.
Not only is it unfair to the parents to be put under such pressure
how does it reflect normalcy? Reflecting on the difficulty that
children have with fantasy and reality, a child could keep
changing sex every time he or she feels that their peers make
them feel one way or another.
It is not like children have intersex on their sleeve.
Our genitals are hidden behind our pants. At what age, if
not very young, do you ask a child if they want surgery? Do they
understand the ramifications of surgery? Most well educated
adults should. (We hope) :confused:
Part two:
Let’s say you wait until teenage hood to make a choice. How
many times can a teenager change their major in college? At
eighteen a teenager can say, “I want to be a doctor!” Put that
child in medical school and they may say," NO!"" I want to be a
biologist now". Switching majors can be a huge deal never mind
changing sex.
After they get their degree a young adult can say,” I hate being
a biologist” and then be come a florist.
Now imagine a young adult making the same choices about their
gender identity. I want to be a female. Remove my penis. Wait! I
changed my mind. Put my penis back. Hold on. I just fell in love
with a man, (I was really a woman) give me pills to make my
breast grow. Wait! It was just a mistake, take my breasts off.
I am not making fun of anyone here. What I’m saying is, young
adults can be that indecisive. There must be some logical
reason why sex (male or female) is decided for most people while
they are still in the womb. :rolleyes:
If an intersex state arrives, why would you not follow
through and choose a sex based on the most logical choice you
can make based on the condition of the child and the maturity of
the parents raising the child? This is why ADULTS can make the
best choice for a child. After all don’t adults make most choices for
children and sometimes teenagers? Why would something as
major as intersex be left up to the child when all other choices for
children are made by adults who have better insights and
maturity then they do? ( We hope) :confused:
Yes, it is true that in some cases a bad choice is made, but
that is not done out of malice. Intersex puts families in a tough
spot to begin with, does it not? I would never advocate lying to
a child. I myself was lied too. But to decide a sex at birth is a
different topic then lying. Surgery issues all depend on how
ambiguous a child’s genitals are. That is a touchy subject and I’m
aware of many different views on that, I respect all views here at
Bodies Like Ours.
Clara, you NEVER sound like a broken record. You suffered just
like I did. I feel greatly for anybody who has been in my shoes.
I feel great pain for my mother, father, and
grandparents, they were put on the spot with my condition.
I just don't see how they could have made any other choice, and
I turned out O.K.
Are you not happy now?
Good to know you still read my posts, but my speling stil suked
two yeers ago:D
Beach, I would love to have you pay me a vist, call me this week!
claraJane
07-12-04, 07:21 AM
Hey Jules,
You make an excellent point
Our genitals are hidden behind our pants.
So there's no justification for cosmetic genital surgery at an early age. Wait until it's clearly an issue with the child. For me it never was.
As far as having to change schools, I went to two grade schools, two junior high schools, and three high schools. I was nearly thrown out several times along the way. Teachers complained about my high pitched voice. One asked me to write an essay on why I'd rather be a girl. The boys in college called me "clit", which was a mispronunciation of my surname. After they decided that I didn't look and act enough like a boy, my college made psych evaluation a requirement for continuing at school. But you know what? I got a 1552 on my SATs, the equivalent on my GREs, graduated from college, and was asked to work on classified government projects before I was 21. But, at 22, it was either resolve the gender issues or die.
I'm not arguing that a child should be allowed an undisciplined life. On the contrary. The parents should choose a sex at birth and stick with it (without surgery!). Then, when and if it becomes obvious that the child isn't that sex, allow the child to make a semi-permanent transition. Let them choose but also make it clear that they can only transition once every N years.
One thing that you always have to keep in mind about surgery is this. Vaginoplasty requires followup. And that means dilation, which is stretching with a blunt object. On a regular basis.
Kind regards,
J
Why is it I keep thinking how cute the idea is on this forum that our genitals shouldn't define us,
-- and yet its just so cute how for many of us its sorta the reason we found this forum, Lol
I was only neutered when I was a baby (records have since shown it wasn't necessary)
And I guess u could say I've lived my whole life without genitals, it sorta deterred me from dating in highschool, but it never affected friendships, no-one knew, I DIDN't KNOW and I could see the bloody mess, Lol
What I'm saying is that surgery isn't a necessity for cosmetic/social reasons at such an early stage of life. I don't even want it now, but I'll see what happens l8tr obviously.
If I was given the choice at say... 11/12 when they started me on hormones, I might've really considered living as a boy, SO MUCH OF MY LIFE woulda made so much sense, I have always been a real tomboy (no surprise to anyone I'm sure)
Jules, I respect that u've had some good experiences with doctors, I've found some good ones recently too,
Its just that the ones I had previously were useless, liars, and offered NO support to me whatsoever, after I turned 18... THATS IT I'm TOO OLD TO HAVE ANYTHING TO DO WITH THEM, that was they're attitude, no joke! So my experiences just haven't been too good, thats why I bitch about them a fair bit!
U know... I'll get ovr it, Lol
Ugh yeah... surgery, Is it just me who's totally grossed out by the thought of it? Maybe I should really get a girlfriend, I've found a lot of lesbians I've met to be really understanding. And I love that L Word show.
My point is I don't think i could ever do it on my own (cut the snickering, Lol)
Dana Gold
07-12-04, 12:03 PM
It's the responsibilty of every parent to nurture their child, not mold them. Children should be seen AND heard and I believe that children are not as unknowing about themselves as most adults think. The problem is that, as one person once told me, "children have no choice". Parenting is a two-way street, and to have a dialogue with one's children is the best way to for the parent to know the child and guide the child to self-determination AND for the parent to establish an open communications bond with their child...so the child is NOT AFRAID to let the parent know their feelings about their intrinsic selves. Cosmetic genital surgery to "normalize" the child is f**ked up, as well as forcible raising as one gender and "cosmetic" administration of hormones (my case) which in all defines "transition ala Dr. Money" and is contrary and harmful to the child's true nature and psychological health. The raising of a child MUST NOT be for the parents’ benefit OR so the child can “fit into society”. Every human being has the potential to both contribute to themselves and society when they are allowed to develop NATURALLY, without exogenous “treatments” (physical and psychological) based upon the erroneous standardization that humankind has constructed to make sure that (sexual) conformity is necessary for a “proper” (sexual) functioning of society. I fully realize that not all such surgeries are avoidable, as in Juleanne's case. AND since my surgery at around 7 yrs was necessary for function and not really definable as "intersexed surgery", I can perhaps be seen to comment on something I have not directly experienced. So what I am talking about, to iterate, is HOW the child is raised after the initial "neutering" or genital reconstruction. Juleanne, you mentioned Sr. Members comments......I see Debbie and her child Kell as a good example on how a loving parent can raise a child w/o sacrificing the child's future and self-development....I would like to think that parenting ought to be a selfless endeavor....after all, they did bring us into the world, is that not so??...hopefully to love us as we are and NOT as we "should be" !
The following excerpt says it all:
Quote taken from article: Reiner, To Be Male or Female--That is the Question, 151 Archives: Pediatric Adolescence. Med. 225 (1997):
"In the end it is only the children themselves who can and must identify who and what they are. It for us as clinicians and researchers to listen and to learn.
Clinical decisions must ultimately be based not on anatomical predictions, nor on the 'correctness' of sexual function, for this is neither a question of morality nor of social consequence, but on that path most appropriate to the likliest psychosexual development pattern of the child. In other words, the organ that appears to be critical to psychosexual development and adaption is not the external genitalia, but the brain."
Amen, Herr Doktor Reiner!. And the above applies to parents as well!
Quotes by ClaraJane:
“I really believe that the best way to tell the sex of an intersex child is to ask them.”
“Then, when and if it becomes obvious that the child isn't that sex, allow the child to make a semi-permanent transition. Let them choose…..”
Amen to you too, ClaraJane; children ought to be talked with at times and not to all the time.…they evolve just as any other human being….they are not "babies and "brats" forever.
Children , I think, suffer more deeply than the parents....especially when certain things are kept secret and you don't know why you are being tormented by others in childhood and onward.........inevitably the child as an adult has to "put all the pieces" back together again...the broken self, heal the pain, .....and to tear down what was indoctrinated and reconstruct one's world when the truth is finally known...and learn anew to live happily for oneself and not for others' benefits.
"A mind and/or a life is a terrible thing to waste":(
Sorry:rolleyes: I couldn't keep my "mouth shut" on this issue.
Dana
Children born with an intersex condition are not born genderless, or without a sex. It is the unnecessary imposition of a gender and sex via surgical methods that is troubling. Listen to the child and the child will tell you who they are. Of course, this is also dependent upon parents not falling into the "we can teach him or her to be a girl or boy".
A good analogy would be having a child that has the biggest nose you have ever seen (I think I've laid this one out before but if not, here goes again). They have this nose on the center of their face and it draws attention despite everyone's best efforts to not stare. This child will certainly be teased, bullied, and perhaps even shunned by their classmates. However, it is a rare surgeon that would agree to do a rhinoplasty until that child is done growing. Why do we not treat genitals in the same way?
Jules, I have no doubt at all that you are very pleased, but imagine if you were not? What then? Sure, your parents meant well, but in your world of the here and now, it wouldn't mean shit. Cosmetic surgery on genitals is irreversible---why take a chance on what others may think the person wants?
Betsy
When the medical professionals and/or the parents decide to do nothing, they take a decision that can be as disastrous as the decision to do something (or everything). Whatever they decide, there is a chance that the child will regret that decision.
Groeten, Miriam.
PS. Is it really necessary to discuss MY nose here? ;)
Originally posted by miriam
PS. Is it really necessary to discuss MY nose here? ;)
Miriam, you have a very cute nose :p
Not doing anything however is reversible---yes, there are cases as you have pointed out in the past where something truly needs to be done before puberty. However, there is a decade between birth and puberty in most cases. If the parents are that distraught, then they should undergo counseling to discover why rather than allowing what could be irreversible harm.
Betsy
Dana Gold
07-12-04, 07:25 PM
"as disastrous as the decision to do something (or everything)".
If doing everything as pertaining to nose surgery, then disastrous is right ....ask Michael Jackson about that one.:p
And, Miriam, your nose turned out just fine;)
On a serious note: It's horrible that no matter if nothing is done or "everything".....the child's life will still hang in the balance. It makes me sad to think about that, and angry. Quite simply, if one is born and/or develops out of the anatomic sexual norm; then one is screwed ; albeit in various degrees proportional to the degree of sexual ambiguity and the amount of "correction" And it is usually these same human beings, who after suffering shit from society, are left to "unscrew" the whole mess. If docs "make a mistake" then who should (or can) be held accountable and simultaneously responsible to "re-correct" the child/adult when the real and natural gender/sex eventually becomes evident. This society/gov't can spend billions on &*%$#@<hidden> (unwarranted) war, political agendas, foreign aid to countries that abuse and waste it .... why not some money for US citizens and health care..... to restore some of the intersexed lives that may have been shattered... or counseling and health/medical resources for both parents and children.....or things so simple as letting Jim Costich have a birth cert change so he can go to Canada and promote peace and understanding of diversity with the choir.....AND I better stop right here........
Dana, hopeless eccentric and idealist:rolleyes:
The other day, in a conversation, I brought up the comparison of nose jobs and intersex. It didn't turn out to be a good example, and several people in the conversation were confused by the comparison. Perhaps a comparison to tatoos would be a better example. Much infant genital surgery is done for non-medically necessary reasons, just like tatoos are medically un-necessary. I think that as you should be free to choose what tatoos you may want on your body, you should have the right to choose what medically un-necessary surgery you want. I think that tatoos are a better example because, like genitals, they are often hidden beneath clothing. Why should one's body be the canvas of other people's definitions of who you should be? When I do a search on "bodies like ours", I always laugh at the additional matches for "the bodies that were not ours". Part of it is probably from general nervousness. Part of my reaction is because I never "owned" my body from infancy- it was already carved up by the time I reached self-consciousness at the age or two or three. My body was never mine in some extremely significant ways. If you asked me, at the age of four or five, what my sex was, I would have said that I was a boy. But underneath the public answer, I had deep questions about the nature of my body and the surgery that had been done to it. As a child, I remember always being uncomfortable when people asked me if I was a boy or girl.
Peter
I mean, I understand how people can be happy with their gender chosen for them, it is THEIR CHOICE to be happy with it, right?
but if that poll (small as it is;) ) is anything to go by, a good number of us would prefer that the choice was left up to us.
I guess what I'm trying to say is that, it takes us each a different amount of time to come to peace with what we are, and hopefully we are able to be happy with our choices in life... I just realises that goes for just about everything in life...
Whoa... philisophical... whoa again, I can SPELL philisophical... or CAN I???
....
....
....
I'm bored, I'm gonna start a 20questions thread, I wanna know some more bout everyone, I have lots of fun with this on the Garbage message board.
The first question I will ask you all is how many of us are raising
children? Second questions I must ask is how many of us are
doctors? It is an important question because the parent’s
feelings about intersex, and the specialists who have been
studying such genetic anomalies for longer then we have, cannot
be ignored no matter how much we dislike the choices they made
for us. (Please no more talk about Money, I am not talking about
him!) I know that Debbie, a member who only pops in and out, is
raising an intersex child, but she does not talk about how Kelli is
really doing. It is her right to privacy and I respect it 100%
Children emulate adults. Children also compare there genitals to
other children. Long before we can remember, as toddlers, we
compare our genitals to our mother’s and father’s and make
identifications to them based on what we see and what we have.
When you’re that young what is between your legs IS important.
It is called the phallic stage as defined by Freud. We may not
remember this stage, but we all went though it.
Intersex is not about having great big genitals. I have seen
large clitorises, in porn books, hanging three inches or more
down a woman’s leg. I have seen vaginal lips that are so strange
that one would think they might not be lips. That, I’m sorry to
say, is NOT the same as ambiguous genitals. I have seen
penises the sizes of fingers, that doesn’t mean a infant surgery
will happen to that boy. Perhaps another good question to ask all
of us would be how many of us have seen our birth pictures?
Ladies and gentleman I have. I have thought of posting them but
in truth they are to graphic and disturbing. What I saw between
my legs was horrifying, even though I knew it was my body as I
was born in. They are some of the most disturbing pictures I have
ever seen of myself! If you really think ambiguous genitals is
something pretty, but a little different, you are wrong. Unless you
have seen what you looked like at birth, you cannot put yourself
in your parent’s shoes. You might have made the very same
choice for your child, that is, if any one posting on this thread, at
this point will be raising one.
Comparing ambiguous genitals to a giant nose?
First, your nose does not define your sex. (As a child) Second,
your nose is not used to relieve your bladder. Third, A better
analogy would be to ask if infant rhinoplasty surgery should be
done if your nose was inside out, and if you could not use it to
breath out of, or if your inside out nose might stop you from
breathing all together.
-------------------------------------------------------------------------------------------------------------------------------------
Clara Jane said: There's no justification for cosmetic genital surgery at an early age. Wait until it's clearly an issue with the child.
--------------------------------------------------------------------------------------------------------------------------------
Most early genital surgery is done to children who have severe
life threatening urological problems, or worse, like myself. Very
rarely is it ONLY just a cosmetic issue all though once you start
operating cosmetics could come into play. Let’s remember that
most babies and toddlers’ male and female can look alike. If your
genitals can’t define who you are as an infant how can you ask a
baby who cannot speak what it’s gender is? What they still teach
at Harvard Medical School today is that gender is a social
construct. Ask any sociologist with a doctorate from any
prestigious college and they will tell you gender is socially
constructed. It is not a nature/nurture issue.
It is not a question of a person having a sexual identity as an
adult, when you a toddler. It is a question of confusing the basic
sex role that parents need to raise a baby with normalcy, that
issue is not cosmetic. How can you put any child in a sex role if
you can’t tell the sex?
--------------------------------------------------------
Dana said
Quite simply, if one is born and/or develops out of the anatomic
sexual norm; then one is screwed.
------------------------------------------------------------
Not true. I turned out o.k. And I am still not happy, that I was
born intersexed to begin with, but I except it. Had I had normal
genitals I would have made a fine boy. I was way out of the
anatomic sexual norm. I still am, surgery has not changed that
about me.
I think it is energy not well spent, though, to be still unhappy
and angry about choices made for me when I could not even feed
myself. I am concerned now with helping our new members feel
comfortable about their bodies and help them understand their
childhood. How can I help anybody if I’m the one who is still not
comfortable with what happened when I was a baby?
All of the issues here are issues that we really have with our
parents. But because our parents don’t want to talk about them,
or in my case my mother is dead, we bring these issues up here.
I agree with Miriam that a do nothing approach seems to be more
extreme then to take the advice of a specialist who is far better
trained then we are.
I openly admit I don’t have all the answers, I’m bringing up my
thought after many long night of refection looking at all the pros
and cons of this very difficult topic.
Does Bodies Like Ours have a disclaimer that says any advice on
this site should not be taken in place of real medical attention?
Again ,I will ask are any of us are medical specialist in this field
with masters and doctorates? AND I better stop right here…….
Betsy Wrote:
Not doing anything however is reversible---yes, there are cases as you have pointed out in the past where something truly needs to be done before puberty. However, there is a decade between birth and puberty in most cases. If the parents are that distraught, then they should undergo counseling to discover why rather than allowing what could be irreversible harm.
What I meant to say is that there is anecdotal evidence that an unknown number of people are not happy with the treatment they received in their childhood. But there is also anecdotal evidence that other people are quite happy with what has happened to them. The problem with anecdotal evidence is that it proves nothing. I don’t want to offend anyone, but it is obvious that BLO has more members who struggle with their intersex condition and the way they were treated in the past than, let’s say, AISNederland. There is a potential danger in using the anecdotal evidence as if it has been scientifically or statistically proven, because there is a chance that only a relatively low number of people share the same experiences. I want to quote Richard Feynman on this “if you're doing an experiment, you should report everything that you think might make it invalid - not only what you think is right about it... Details that could throw doubt on your interpretation must be given, if you know them.”
It’s the nature of a public forum like BLO (and also of many support groups) that we never hear the people who are 100% satisfied with their treatment. But does that mean they don’t exist? I think that my nose is all right, so why would I complain about my nose? Or why would I complain about doctors who did or did not treat my nose in childhood?
What we need is long term follow up research on how people with all kinds of intersex conditions feel about their treatment.
I disagree with the statement that not doing anything is reversible. It’s true that it’s difficult to build a pole when someone else has started to dig a hole. But there is more than just the scalpel. At age 11 (or so) many of us have to start hormone treatment otherwise they end up as a giant (Uhhh, I’m 6’0”). But the effect of hormones is also irreversible. And then you have the psychological effects of an incorrect sex assignment. Someone who is a girl but was raised male, will always feel that her youth was taken away from her; a youth with other girls, doing girly things… Our treatment involves more than just our bodies. The psychological factor is at least as important. As a matter of fact, I see a shift in the treatment towards psychology. Most research done on intersex conditions today is about gender and the psychological or psychosexual implications of intersex conditions, and not about the physical aspects of intersex. I really don’t know if we should like this. In a way many researchers don’t see a difference between intersex adults and transsexual adults. I just wrote a paper for ZonMw (The Netherlands Organisation for Health Research and Development) that is a comment on a proposal for research on a) gender dysphoric children b) children with an intersex condition and c) adults, both transsexual and intersexed. They placed us in one group with transsexual people (regardless if we changed to another gender role or not!).
Well… It’s impossible for parents and doctors to do ‘nothing’. Any decision, even the decision to leave our bodies unchanged, will influence our life. Sometimes we will like the decisions, sometimes we won’t.
Don’t take me wrong, I’m not saying that unnecessary surgery is okay. But I want to emphasize that there is more than just the scalpel. The question is whether medical professional and parents take the RIGHT decisions. But when we say that surgery is wrong and don’t offer any scientific proof, we are making the same mistake as John Money did 50 years ago. At this moment we just don’t know what is better; surgery or no surgery (we FEEL it’s wrong, but a feeling is not the same as scientific knowledge). And as long as we don’t know I’m against unnecessary cosmetic surgery. Again, what we need is long term follow up research.
Groeten, Miriam
PS. Feynman also said “Physics is like sex. Sure, it may give some practical results, but that's not why we do it.” and “Physics is to math what sex is to masturbation.”.
Internet forums are full of opinions, anecdotes, ideas and sometimes facts, Lol
I guess its going to be hard to get a long-term study done.
If I've noticed anything from BLO, and the research materials I've read so far (some I agree with, others I don't, ah Opinion)
The one thing that seems prevalent is that different parts of the medical community agree and disagree over what intersex is and how it should be dealt with. Ideas, opinions etc seem to differ depending where you are in the world.
For this reason its very hard to get a study on IS done and to believe its impartial.
It seems so hard to tell the difference between the studies that are done to collect facts and the ones done to prove a point. Another problem is that the IS studies I've read about (so far) all seem to be rather small.
So yeah, Miriam has the right idea, there really needs to be a long-term study into this, (is there such a thing as a worldwide study? cuz that'd be a brilliant idea!)
And I fully respect everyone who is happy with their treatment, I look forward to the day when I am at peace with my body and... oh everything, Lol
The only contribution I've been making is talking to my new psychologist who's trying hard to become a help to the IS community, And I keep an online diary so she can read my thoughts and feelings about it all. (its funny, I've never kept a diary all my life!)
As for leaving my body (relatively) unchanged, I got used to having no genitals, its not like anyone could see it, and I'd already accepted from an earlier age that I'd need surgery later in life (perhaps), the difference between then and now is that I was able to accept myself then, and my image of myself has changed since then.
I wouldn't say growing up without the cosmetic side of genital surgery has damaged me, I'm just thankful they didn't screw around with me anymore than they did!
The choice SHOULD be left to the patient, just like any other cosmetic surgery
The child should be made aware of their condition at an early age, so they can grow with it, develop their own understanding of their body, so they can make their own informed choice that THEY will be happy with.
The reason I am at peace with being in a wheelchair is because I HAVE grown up with it, so I have my own understanding of what being in a wheelchair is to me.
If we were made aware of the truth from the beginning, just as anyone else would for any other medical condition, then isn't it possible that we could have developed a better understanding of how we feel about our bodies better?
Its gotta be better than being hit with the shock of it when your about to embark on your adult life.
Again, this is just my opinion, I'm not sayin anyone has to agree...
So yeah, Miriam has the right idea, there really needs to be a long-term study into this, (is there such a thing as a worldwide study? cuz that'd be a brilliant idea!)
Several people are working on it. But it isn’t easy to get the funding for this kind of research. In Europe a wide research project has already started in Germany and there are plans to start similar projects (with the same questionnaires) in other European countries. That’s why I wrote the report for ZonMw...
At the symposium “From Gene to Gender” in Lübeck medical professionals from all over the world (well, mostly Europe, but sometimes it seems we are a bit ahead of the rest of the world ;) ) discussed the possibilities of a worldwide project.
Miriam
Dana Gold
07-13-04, 12:09 PM
My rants about "treatments" for intersexed and variant conditions are multidimensional: they span from individual psychology (family) to med. community, all the way up to government policy and religious dogma. Much truths have also been spoken by Juleanne, Miriam, Peter, and Shonan. I meant what I said when I mentioned "screwed", but that perspective is from the socialized indoctrination of society's horror and disgust:eek: at any "sexual" characteristics out of the so-called norm....so much so ingrained into all of us just as the "creepiness" of spiders and snakes are to many......sort of like a collective consciousness. You are right in one aspect, Juleanne, the first and so very difficult step is to accept our own bodies....despite many around us invoking their negativity and re-inforcing that concept within us; and their own world. That is what makes us feel so alone. Miriam is also right in that the scalpel is not the only aspect to the life experience of a person of anatomic sexual "otherness"....but anything done to physically transform a child to an altered form of sex (especially without their knowing it) may turn out to be a Frankenstinian nightmare later on, whether the exogenous choice is wrong or not. The questions and probable/possible answers to all of the discussion in this thread are perhaps one of the more nebulous, confusing and life-altering things anyone can ever experience in their world. It's like we are all pioneeers in uncharted territory with a multitude of rarely before encountered "obstacles". And all those experiences in the "wilderness" leave their many marks upon us forever, even when we have come to terms with ourselves.
It's only human to wonder "what if", but is self-detrimental when it has become something closer to an obsession and "cuts off" any future hopes and dreams........like it has been with me.
Anyway............:rolleyes: :( ...........
Jules,
Most infant genital surgeries are cosmetic in nature--those that are not such as what you describe are not at question. By saying that unless we are parents, we wouldn't understand, you are making a claim that you cannot not respond to either as I don't believe you are a parent. Parents are not the patient---this is a big concept for many to get. They don't have to live with the results. There are also some legal theorists that are beginning to examine whether or not parents even have the right to consent to surgery that has no proven benefit to the child. if the parents are having issues with their queer-bodied child, then urge the parents to counseling, don't do irreversible surgery on the child for the sake of the parents. If parents always got their way, all children would be super-models and pro-athletes.
There is many studies that indicate doing surgery for the sake of cosmetically acceptable genitals does not give the overall psychosexual results one had hoped for. I may not be a doctor, but I have presented with and to doctors and am very knowledgeable about the recent studies that have been done.
I can offer you citation after citation indicating not so great results, bias within the research, and yet come up with very little supporting early COSMETIC genital surgery.
The problem is that all of us are talking about different surgeries and situations--based upon our own experiences: you are talking about surgery that may have been necessary for function, Miriam is speaking about gonadal surgery and treatment that may be necessary before puberty due to the influence of hormones, and I am speaking about purely cosmetic surgeries that are done for dubious reasons.
I don't disagree at all regarding the need for follow-up and longterm studies, nor with the need for psychological counseling. Both however bring up one of the great failings the protocol thus far has wrought. There are few psychologists trained in the area of intersex issues. On the long term follow-up, you would almost need two groups of people---those that had intervention and those who didn't. As intervention has been the standard, there is going to be bias towards that end.
The rhinoplasty analogy I put out there assumes the nose is functioning fine...I believe I made that point. Perverting it otherwise to a life-threatening condition illustrates the obvious---there are varying degrees of 'differentness'---some just cosmetic, some with a medical urgency.
Gender as a social construction and Freud's sexual development stages are very quickly falling out of favor, thanks in large part to the research that has been done in regards to people with an intersex condition. Harvard may still be teaching it (and I bet the instructor is someone trained in the Freudian way) yet many others have discarded it as evidence has proven otherwise.
Assuming that someone is "not happy" because of the surgeries that took place on their bodies during infancy or childhood is foolish and presumptuous. It confuses the issues by assuming that anger over unnecessary cosmetic surgeries still occuring overrules someone's day to day existance and quality of life. In my own case, there is nothing I can do what was done to me. However, I can work at changing the medical protocol still in effect (including at harvard) which promotes shame, secrecy, and unnecessary cosmetic surgeries done on children.
Also, you asked if BLO has a disclaimer---yes, it's right on the main page of the website, and on every page will come up as a very annoying pop up if you mouse-over the link at the bottom of the page. It's been there since day one of this site.
Betsy
--a specialist in living with a body that was cosmetically altered for no good reason.
aziatic
07-13-04, 07:23 PM
I just want to say that when a large study is conducted on, lets say children born with atypical genitals, we'll know for sure about what if surgery is right but based on what I'm thinking, I don't think the amount of people happy will outweigh the others. We are talking about doctors assigning a sex at birth, it's pretty much a 50/50 risk, a guessing game. Now if you think about that and what I read on the 50% rule which they say how 50% of classic transsexuals take their lives before the age of 30, how do you know that thousands of IS just like us arent taking their own lives before they ever make it to this board. Just because the doctors do tests on chromosomes and other things, they don't really know what sex the brain is or will become. That's irreversible surgery and the gender theory is based on Freud's work of 100 years ago. We really don't know for certain if having "normal" looking genitals at a toddler age is so important for your mental health just because one man said it. Alot of the work in phsycology has been based on ideas, not facts. It seems that every person that for instance has atypical genitals that I've read about on this forum has been happy to not have surgery. Now if only the government could put down a good deal of interest and money on some research on this issue
Aziatic Hello! thank you for speaking up.
-------------------------------------------------------------------------------
it's pretty much a 50/50 risk, a guessing game. Now if you think
about that and what I read on the 50% rule which they say how
50% of classic transsexuals take their lives before the age of 30,
how do you know that thousands of IS just like us arent taking
their own lives.
------------------------------------------------------------------------------------
Jules says: when we are conceived it is a 50/50
chance of being male or female.
----------------------------------------------------------------------------------
That's irreversible surgery and the gender theory is based on
Freud's work of 100 years ago. We really don't know for certain if
having "normal" looking genitals at a toddler age is so important
for your mental health just because one man said it.
------------------------------------------------------------------------------------
Jules says: Well, you are half right. :) Every
theory about child development has huge flaws. Even studies by
A.B.D. Clarke has been questioned. Lisa Serbin (1980) sounded
great at first but now, even she can be picked at. Even Piagets
theory of coginitive development can be criticized. What about
Albert Bandura's Social theory? You can pick it apart too. Even
in the modern self-actualization theory by Maslow, holes can be
found. We may never know the whole truth, but beware. When
anybody tells you a theory on how children can be brought up, it
is probably flawed.
-----------------------------------------------------------------------------------
For the people who Freud influenced, Freud was a new
cosmology only compared to the revolutionary discoveries of
Copernicus, Charles Darwin, and Isaac Newton.( Just because
Copernicus' ideas are over a hundred years old will not mean we
stop thinking that the earth goes around the sun.) We can
thank Frued for breakthroughs like fully understanding that
woman are sexual creatures. Before Freud, any woman who
admitted to likeing sex, was thought to be evil, or at least a
problem. :eek:
Freud had so many breakthoughs on understanding how people
think about themselves,that even if everyone disagrees with all
of his psychoanalysis, he still has influenced everybodys thinking.
Aziatic, you make great points. I'm glad your sticking with us, you to Shodan:D
Dana Gold
07-19-04, 01:07 PM
HEY! JULEANNE!
I just spent 3/4 hour composing a lengthy reply to your PM, then in an attempt to send it, was notified of your full in-box....then my computer "wasted it! :confused: :mad: ...my fault, though, should've saved the post in Word...please empty in-box, dear....Thanks.
Jules - I believe it was you who asked if anybody was raising children. Well, I have four (boys) if anybody remembers from my previous rants...
There are several things I observed with my youngest. He had pyloric stenosis - an obstruction of the stomach caused by excessive growth and pinching of the spincter at the bottom of the stomach. It happened at about 3 months, and would have caused death if not fixed.
While you may think that a 3 month old wouldn't have an inkling about what was happening to him, that assumption couldn't be further from the truth - at least in this instance. He was alert and became (excessively?) needy for comforting and support - while he couldn't understand exactly what we were telling him, he certainly got the gist of our concern and the comforting explanations we tried to give him. He grabbed onto any comforting we gave him, and looked to us, his parents, to aswage (sp?) his fears. This is to be expected, and shows the great need for support of ANY infant should, and MUST be given in such circumstances, REGARDLESS OF THE SURGERY BEING PERFORMED.
I have also noted his tremendous need for support and assurance in the ensuing years, and I KNOW that the surgery has had a LIFELONG impact on his persona and personallity. And to think that this surgery did not involve anything related to his personal sense of being, but was done to save his life.
I would argue that ANY SURGERY on ANY INFANT is a LIFE CHANGING EVENT, and should be viewed as such!!! In PARTICULAR - to go about changing a child's basic anatomy merely for the sake of cosmetics is EXTREMELY STUPID AND SELFISH!!! It is an EXTREMELY INVASIVE PROCEDURE, AND SHOULD BE AVOIDED AT ALL COSTS!!!
It is one thing to perfom life-saving surgery at such a young and critical age. To do these surgeries on a perfectly healthy IS baby in the name of so-called 'normalcy' is just plain wrong. Wait until the child can communicate. Explain in an age appropriate way that they are merely DIFFERENT, and that they are SPECIAL (very strong emphasis on this point). Start young!!! BE POSITIVE!!! Provide councling to both the parents and the child!!!
Jules - as you always say - "COURAGE - PASS IT ON"!!! For a child, this alone is all important, and MUST come from the immediate family throughout childhood, until they can understand what and who they are, and can begin to make any choice they feel comfortable with - even if it means doing NOTHING!
As for me, I voted for my own choice, although my own situation had already been controlled from about 6 months or so. I KNOW that I have deep-seated emotional issues surrounding the surgery done to me, and on top of this, is the fact that I had been adopted and 'passed around' to various care-givers in my early infancy.
I STILL find it hard to develop close relationships due to the imbedded fear of being abandoned AGAIN. Yet, I still hold out for that one person to accept me, 'warts and all'. As I have said before in a previous thread, I have yet to build up the courage to attempt any relationship due to my own sense of inferiority and uncertainty.
I can empathize with Peter when he said that his body was not his from a very young age - the DOCTORS took that control away from him, just as they did with me. To say I'm angry doesn't begin to describe my feelings towards them, and my adoptive parents who chose to lie to me, and ignore me and the manifestations of my condition. They were lucky that it was so well hidden by the surgery. It wasn't necessary for them to support my lack of understanding of who and what I was.
Jules, I'm glad that you are happy with what was done for you. It seems that you had (most) of the support you needed in terms of your family. (see above) What *was* done need not have been explained, AS LONG AS THE SUPPORT WAS PROVIDED.
Too often, however, this support is lacking, or altogther absent due to the protocalls currently in place. This what we, as a group, must hope to change so that future IS children have the same advantages the two half-siblings in Austrailia (sp) have.
On another note regarding suicide - I attempted it about two years after my initial discovery in 1976. Only a miracle of physics prevented me from succeding. I STILL did not get the support I felt I needed, but I did learn a fair amount about myself, and my place in the world because of it.
However, I still had to hide my suspicions and feelings - Secrecy and Compliance were Paramount, and while not referred to directly, there was always the underliing tones to this effect.
THIS IS THE LEGACY WE, AS A GROUP, NEED TO ERASE FROM THE MEDICAL TEXTBOOKS. I'VE SAID IT BEFORE - COMMUNICATION AND INFORMATION MUST BE DELIVERED TO EVERYONE INVOLVED WITH THESE DECISIONS. THIS IS TO PREVENT A REOCCURANCE OF OUR OWN EXPERIANCES BEING VISITED UPON INFANTS WITH I.S. CONDITIONS, THUS BREAKING THE CYCLE OF ANGER, HEARTBREAK, AND SUICIDE.
Anybody who speaks in caps as far as i'm concered is yelling at
me. Who ever yell the loudest in a debate does not win the
debate.
Any surgery on a infant is terrible! That is the truth.
If you can give a list of all the surgerys you call cosmetic and all
the surgerys you call life threatning give me numbers on how
many are done and in what hosptials when we can talk again.
------------------------------------------------------------------------------------qote:
As for me, I voted for my own choice, although my own situation had already been controlled from about 6 months or so. I KNOW that I have deep-seated emotional issues surrounding the surgery done to me, and on top of this, is the fact that I had been adopted and 'passed around' to various care-givers in my early infancy.
---------------------------------------------------------------------------------
Its sounds like your issues are far more then just your intersexed
condition if you need anybody to listen I'm all ears! Put please
don't yell at me. :confused:
I use CAPITOLS in my messages as an EXCLAMATION, or a HIGHLIGHT!
Very rarely in yelling...
HOOOOOOOOOOOOOOOOOOOOOOOOOORRRRRRRAAAAAAAAAAAAAAAYYYYYYYYYYY!!!!!
Payday from work this week!
See, that was Yelling AND Exclaiming...
Teehee, I'm MULTItalented, lol
I have sent a personal reply to Jules regarding this item, and I just wish to express my heartfelt apology to her regarding my misuse of capitals, via this open forum.
I should know better, but I felt I needed to make a point about this particular subject - something I feel very deeply about due to my own experiances. I did not wish her to feel that I was yelling at her, and for that I am truly sorry.
I think that we all come here to look for support, understanding, and compassion from those whose experiances are similar to ours, or at least fairly close. Some have had worse, some better.
I'm grateful that those who are comfortable with their assignment and outcome are willing to show a positive side to these moral and medical 'dillemmas'. However, some outcomes can truly be a nightmare.
In particular, I feel compelled to direct attention to Kelly's experiance that was related in the Time magazine article. I know that I cried terribly when I read it, and it was that article that prompted me to join and be active with this group - this alone says it all.
I have read, almost in it's entirety, the legal article regarding the legallity of sexual assignment of children born with an intersex condition. I find the arguments against surgical action both comprehensive and extremely compelling. I recommend it to all who still feel that surgery at a young age is necessary.
I will say that it is quite possible that the only reason I was able to sire children was due to the very actions of the doctors that I decry so loudly. By the same token, it is also possible that I was denied the ablility to bear children because of these same actions.
Maybe - just maybe - they didn't go far enough in removing 'extraneous' anatomy in my case - in either direction. As such, perhaps I should tone my criticisims a bit. Just the same, my own current experiance points to the possiblity that it didn't matter WHAT they did to me, so much as it was that they attempted to do something.
Most likely it was the surgery itself, and the circumstances surrounding my birth, that have caused the greatest psycological harm, and what I have observed with my own child brings home that very point, and speaks to the reason I wrote my response as I did.
However, my child was given all the support and understanding we as parents could give. He has turned out to be a bright, compasionate, and forgiving person. He too has had some hurdles to jump, outside of the surgery, but he has shown perserverance and determination in overcoming them, much as many of us have had to do.
I am VERY proud of his accomplishments as a person and a student, as I am extremely grateful to the people that have taken the time to express their stories and opinions in this forum. I do not for one second wish to degrade or dismiss anybody's opinion of the issues surrounding IS or their personal situation.
Jules - I suspect that much of your positive outlook on life is a direct result of a generally positive and supportive upbringing by your family. This is a truly wonderful thing to have and is to be cherished above all else. Your cup is always half full.
In your much appreciated personal reply to me, you related the possible scenario of a child being told about their IS condition in very telling terms. What you portrayed is very compelling, but I feel it doesn't necessarily reflect the dynamics of how a child with an IS condition should, or will be 'told' of their situation.
As an example, I offer the following; I knew from a very young age that I was adopted - this is something that was not hidden from me or the (adopted) sister I grew up with. This fact was fully accepted and understood, and needed no other explanation. (pity that they chose not to tell me of my OTHER situation) I must point out that they DID choose to tell my sister about her premature birth and the problems associated with it - under-developed lungs, etc.
While I'll admit that a medical condition such as IS, is not necessarilly the same as being adopted, the general concept of how a child learns and accepts things is much the same. I will again point out the Austrailian IS half-siblings and the open upbringing that they are recieving. I will also bring up the noted similar frequency of occurances of both spinal bifida and Down's in the general birth population, niether of which are currently hidden from the general populace, as well as they shouldn't be.
In fact, in one of the soccer teams I coached, we had a child with SB, and he was out there, doing what all the rest of kids do, and knew of the potential problems associated with his condition, much as the many children who had asthma did. This did not stop them, and they all are living full, fruitful lives.
It is the stigma, secrecy and shame of IS that most of us have lived with that is the most damaging. These associations were ingrained upon (most of) us from early on, and makes our 'coming out' all that much harder, if not impossible.
Yet, this idea is changing, and MUST change if we hope to avoid the terribly damaging surgeries being visited on children like Kelly. This type of condititon needs exposure and a general understanding, at minimum, amongst the medical profession, and ultimately, in the general populace, just as SB and Down's are.
Here in the USA, we have the problematical barriers of conservative/christian sexual dogma and the age-old problem of puritanisim to overcome. But, in time, these too shall be surmounted. All we need is that same perserverance and determination that our children bring forth to tackle the problems in their lives. I know we can do it. The cup IS half full!
Shodan, when most adults write in caps, it is read as yelling. If
you wrote me in caps it would not bother me as much, but when
someone close to my age does it, is a different matter. I accept
Whn’s apology, twice :):)
-----------------------------------------------------------------------------------
Hello, Wyn. You know that there are (about) twelve members
who post here. I think of this membership like a jury. We look at
the evidence of infant genital surgery and try to decide if a crime
as been committed. All it takes is for one person to not be
convinced on a jury, and that jury cannot make a verdict.
As far as the crime, when, and who has committed it, and who
are the victims? Apart from our group, we don’t have the victims
names We should have thousands of outraged victims, if the
numbers are right.
I never hear names of doctors or hospitals or parents that can be
pinpointed. Number like 1/5 or 1/2000 come forth, and
quotes from very old doctors, but what does it prove?
Wyn said:
----------------------------------------------------------------------------------------------------------------------------
Jules - I suspect that much of your positive outlook on life is a direct result of a generally positive and supportive upbringing by your family. This is a truly wonderful thing to have and is to be cherished above all else. Your cup is always half full.
--------------------------------------------------------------------------------------------------------------------------
Jules says:
I wish that was true. Both my parents were alcoholics, self-
absorbed, and very indifferent to my IS condition. :eek:
If anybody was kind to me it was my doctors, who went far out of
their way to see that I was comfortable in my skin. My mother
made me feel like a crumb for worrying about things like not
having pubic hair, or having nipples that were to small when I
was young. On the other hand my doctors always disregarded
my mother claims about me that I was nuts and just tried to do
what I asked. My generally positive attitude simply is.
I don’t give any of my family credit for that. I have always found
life interesting, and people generally like me. Those are the two
things that keep me positive.
I think I read way to much Aristotle and Epictetus (on the art of
living) anyway!
Looking back, if I had one more crisis on my back as a child, it
could have been enough to push me over the edge. If I had to
decide my sex before I was ready to face my sexuality I would
have made a worse choice for myself. I don’t think any of us can
use our past lives to judge any intersexed child and decide who
should make choices for that child. We, are not that child or the
family. Parents, in the end, are the only people who should have
the right to decide. I’m sure any judge would see it the same
way. If this were any other surgery I’m sure we would make
better headway. But as long as somebody has to determine the
sex of a IS child who (the child) has not had a course in biology to
understand themselves, there are no better answers yet that I
can see.
As far as Kelly, we have never heard Kelly’s side to the story, only
Kelly’s mom story of Kelly’s side.
Why does not Kelly post here herself? The topics here are of a
very adult matter, not suitable for a child. Bingo!:rolleyes:
Kelly may, and I think she will, turn out to be a very fine adult. I
don’t like to talk about another person’s child but if my mother
had posted here she would be outraged that anybody would
dare question what a doctor and a parent decide on, in privacy. I
should ad, that her story of my raising, and my story would be
very different. There are two sides to every coin.
------------------------------------------------------------------------------------
Wyn said:
--------------------------------------------
I find the arguments against surgical action both comprehensive and extremely compelling. I recommend it to all who still feel that surgery at a young age is necessary.
--------------------------------------------------------------------------------------------------------------------------
SO do I. You must list what type of surgeries on- what type of
intersex- and what age- are you against.
What is considered cosmetic in nature differs on the person.
Remember that they are just as many CAH women who would
not want to have had their penises left on as babies as there
are who do.
Cosmetic surgery is objective, and people don’t like splitting
hairs. This is only a child development theory, that, I can see the
flaws in.
Some thoughts from behind the scenes...
I get way more emails than this board gets posts---emails from people who are struggling because of what was done to them in childhood surgery-wise, emails from parents, emails from doctors and therapists and emails from attorneys. Those last two are often the most enlightening (and often are the source of some of the best research out there---buying journal articles on an ad-hoc basis gets expensive very quickly)
That said, I have never received email or communication from someone totally happy with their surgical experience. Jules, you are an exception to this.
I recently had email and then a long phone conversation with the mom of a CAH girl because she was being visited by social services as a result of her not allowing surgery on her daughter.
Another mom who has contacted us is now in the process of filing a lawsuit against the hospital that pretty much lied to her about the surgery that was done on her daughter.
Most who contact us do not participate on the boards for a myriad of reasons---the biggest being it is difficult to talk about in an open forum.
Jules, you ask who the 'victims' are...they are the ones having their genitals mutilated for cosmetic reasons and without their input. They are the parents who feel like they are being forced into something they know deep down is not right, they are the parents who are lied to because some doctor thinks his lies are best for baby. They are the single mom being visited by social services threatening child abuse charges because she won't allow her daughters genitals to be surgically altered.
Most of the research coming out these days is not being done by 'very old doctors' There is an incredible amount being done over the past year or so and almost all of them are coming to the conclusion that early genital surgeries done for cosmetic reasons on children is simply wrong. I have another legal doc I'm working on getting reprint permission for that will literally blow your socks off regarding the legal issues surrounding the current state of affairs. Because of this explosion of recent research, I have very little compassion for parents today who see surgery as an option. The evidence supporting it just isn't there.
On the comment regarding CAH...how dare you call what was removed from me a penis? It was my clitoris and calling it anything else simply illustrates your lack of understanding of CAH. And by the way, I don't know anyone with CAH who is happy their clit was stolen from them. Aimee who posts periodically is accepting of what was done but I think it would be correct to say she wishes she had her clit as well. I know if I am incorrect, she will set me straight.
While I haven't seen Deb and Kell in some time, I believe Deb represents her child quite well.
Betsy
---------------------------------------------------------------------------------
Betsy said:
comment regarding CAH...how dare you call what was removed from me a penis? It was my clitoris and calling it anything else simply illustrates your lack of understanding of CAH
-----------------------------------------------------------------------
Did I say anything about you? Or your body? The
lady that I have spoke to who has a CAH condition, did not
correct me when I asked her to describe what CAH looks like
and then asked if it is penis-like. If she is incorrect then I was
incorrect repeating it.
You are right, I am not a expert on CAH. I would have to go to
medical school before I would be.
I guess it is objective to who has seen their birth pictures and
what they see.
I also think Debbie did a great job on 'Time" and speaks well of
Kelly. Still, that is not Kelly's voice, It will be up to Kelly if she ever
wants to speak out.
I'm sorry that your upset.
My apologies if I offended you.
There is a world of difference in "penis like" vs "penis" and is reflective of a phallic-centric mentality. While both clitoral and penile tissue is similar, it's simply incorrect to confuse the two. Would you say that a boy with a small penis was born with a clitoris? They look similar.
No, I don't think you need to go to medical school to become an expert in CAH. Most doctors know very little about it and prefer to dose a body with steroids without regard to the end result. Most adults with CAH know more about the condition than most doctors do. I bet this is the same for any rare medical condition---you need to become your own advocate.
it's funny that you claim parents like Deb, who I know from personal experience as a very wonderful advocate for Kell can't really speak for them. How then can you claim parents can speak for children in regards to surgery?
Betsy
This evening, I and another "Bodies" member attended the SF Human Rights Commission Intersex Task Force Meeting.
In a previous post, Betsy mentioned:
"I recently had email and then a long phone conversation with the mom of a CAH girl because she was being visited by social services as a result of her not allowing surgery on her daughter."
Marcus Arana, a SF Human Rights Commission staff member and discrimination investigator was extremely interested in the issue and would like to know more about this case of possible institutional abuse. He was visibly moved when I briefly related your general description of the situation. He would be interested in hearing from you and the mom you mentioned.
If anyone knows of other cases of state intervention to promote the surgical normalization of a child, please let me and Marcus know. We will do everything we can to bring it to the attention of the full SF Human Rights Commission.
Peter
Peter, I'll ask her but she was pretty traumatized over it. My immediate concern was finding someone to work as an advocate on her behalf in the state she lives in. Thankfully, it was a state where we have many. I'll give her a ring or send an email to her to inquire none the less.
Betsy
This was in my email this am when I woke up. It's most enlightening. I need to write mom back and will either today or tomorrow.
Bodies Like Ours has permission to republish our story on the Bodies Like Ours website.
Hi! My name is Debbie. When my baby was born the Dr's and nurses hesitated for what seemed like an eternity and then finally just said, "You have a healthy new baby." The Dr. and nurses were examining the baby and said to me, "We are not sure if your baby is a boy or a girl, but we think it is a boy."
During the pregnancy an ultrasound had been done and the doctor was 98% sure that it was a girl. But, I had a feeling that it was a boy, so I hesitated on buying any girl things.
After the baby was a few weeks old he became very sick and had to have a surgery called Pyloric Stenosis. I don't know if it could possibly be related to his condition or not.
We were referred to a Urologist. A chromosome test was run and we were told that the baby was genetically a boy. So, the urologist began steroid injections (hoping to promote penil growth) and a few surgeries (to eliminate the "hidden" part). The urologist labeled him with micro and hidden penis. He said that he was concerned about his scrotum as well because it was not developed. As far as I can remember, he did not mention anything about whether or not testes were actually there or found. He said that now there was nothing more that we can do until my son hits puberty.
I started doing some research on the internet recently because my son is now 13 years old. He seems to only be growing outwards (in weight) and not upwards (like children normally do, especially at this age. Plus, he is developing a chest that looks very similar to a girl that is developing. I am not sure if it is just because of his weight, or if he possibly is developing feminine parts as well.
I learned from the internet that we should be seeing an endocrinologist. I had never been referred to an endocrinologist by a doctor. So, at my son's next "well child" appointment I talked to his doctor about seeing an endocrinologist about the situation. They immediately started working on getting us the referrals needed.
The endocrinologist did a bone x-ray which shows him to only be 11 years old. So, he is not physically developing, like in height, as he should be. The endocronologist also ran blood tests and determined that the testosterone levels were very low. So, she began testosterone injections and then referred us to a different urologist.
This new urologist did a physical exam and discovered that he could not find any testes. There is a very small scrotum there, but no testes. He had an ultra-sound exam done, still looking for the testes. Still, no testes were found. Now we are being scheduled for an MRI to try to find some testes.
The doctor (urologist) said that he is concerned that for some reason the blood flow to the testes may have gotten cut off and the testes were basically dead. He said that if this was the case that it could case my son to be at a much higher risk for malignancy.
So, of course, my mind has been going 90 miles an hour since that appointment with the urologist. I mean, if he does not have testes, what does that mean? Where is the testosterone from the injections going? Did the steroid injections cause the testes to disappear? Or has he always been this way? What does that mean for his future?
We (my son and I) are just very anxious, nervous, confused, curious, lost. I mean, where do we go from here? We are waiting to have the MRI and get those results back and I guess that from there we may have some decisions to make that could affect his future and his sexuality, etc.
We look forward to getting connected to others like him, to know that we are not alone. I am trying to find as much information as possible about this so that we can make informed desicions and the best, correct decisions. We would like to see more people involved, informed. We would like to become involved and active in this community of people who have been basically hidden away. We want the world to know that these are still people, with feelings, thoughts, emotions, sensitivies.
I hope this helps someone else who maybe just had a new baby or has a child the same age as my son, or maybe with a parent whose child grew up without the operations until that child was able to make their own decision about what they do and do not want done. I know that my son is very strong and adamant that no matter what any tests or exams show, he was raised a boy and he feels like a boy inside and he wants to stay a boy. I am so glad that there was not a surgery done to change his gender. I remember the urologist telling my sons father and I that at that point (when my son was just a new baby) that he could turn it into a girl or boy just as easily, it did not matter which we chose. But, we chose to go by the chromosome results and I am so glad that we did.
Debbie
The letter from the Mom regarding pyloric stenosis (PS) is quite interesting, particularly for me, due to my condition, and the fact that I have 4 boys.
I do know that all my boys were completely 'normal' in terms of sexual development. What's particularly telling is that the youngest, who developed PS, also was the 'biggest', sexually, of all of them.
Another fact told to us regarding PS is that it most happens most frequently in first-born boys.
There seem to be both connections and disconnections between these two seemingly separate issues (penile size & pyloric stenosis). While I'm no geneticist, I'm tempted to think that there may be a transcription error inherent in all these manifestations.
Does anybody know anything about how the transcription process is encoded or controlled? I would think that this is a potentially large area of research, and may point the way in determining why things happen the way they do. They may find a connection between seemingly disparate, but mutually occuring problems in prenatal development - I'm sure that the PS and penile size duallity are just one manifestation of a HUGE number of combination congenital deformities, and is not confined to IS or PS conditions.
Dana Gold
07-22-04, 08:27 PM
Hi Wyn,
Genetic expression and transcription factors is very complex. So, as a start:
This link gives a brief introduction into Homeobox (Hox) genes and their functions. The proper expression of Hox genes is necessary for the accurate patterning of the body plan.
www.pbs.org/wgbh/evolution/library/03/4/pdf/l_034_06.pdf
as for specific transcription factors....there are tons! , each one specific to a particular cell, system, or organ, here is one, a bit more complex in presentation.
http://www.pubmedcentral.gov/articlerender.fcgi?artid=230666
The link below is a library of genetic expression factors...anything and everything included....section on angiogenesis is particularly intriguing (to me); one research lab I worked in here at the University (Ophthalmology) investigated roles of various growth factors in development of diabetic retinopathy:
( vascular endothelial growth factor (VEGF), transforming growth factors (TGF-beta), fibroblast growth factors (FGF)
http://vlib.org/Science/Cell_Biology/gene_expression.shtml
Dana
kimflow
07-22-04, 10:52 PM
I'm not sure if I would rather have had the doctors correct my enlarged clitoris when I was a baby or not. I've lived with it for 23 years before taking it upon myself to consult a doctor. The shame and anger I felt about my condition was undescribable. No one in my family discussed it with me (not even my parents). Til this day they have yet to discuss it with me. Part of me wishes that the surgery was done early on so I wouldn't have had to feel embarrassed about my body. The other part of me is happy that I was able to make my own decision (even though now I somewhat regret that decision). Whether it was corrected as a baby or an adult, the main thing that I needed was open communication with my parents about it. Instead, I suffered in silence knowing that they knew I was different. I felt like a dirty little secret that would shame the family if someone found out. I can see that as a parent it is an extremely painful decision. If the parents decide to wait until the child has a say in it, then the lines of communication should be open as soon as the child is able to understand body parts and/or sexuality. I guess my folks' mistake was not electing to have the surgery when I was young, but not discussing it with me.
Dana Gold
07-23-04, 10:35 AM
Quote:
" main thing that I needed was open communication with my parents about it. Instead, I suffered in silence knowing that they knew I was different"
As children, we trust our parents implicitly and hold dear to our hearts that they love us. That love and trust are broken when we are lied to (after having learned from them that "lying is bad") and have secrets withheld from us (for a lifetime in many cases) that result in amorphous knowledge and confused feelings about our bodies (and selves) with likely negative impact upon our physical and psychological health later in life. Many of us go about our lives feeling "something is not right with me" (i.e., "I'm all fuc*ed up") even though we know nothing, or very little about the "family secrets" that stay buried. I personally have felt betrayed, more so not because of what was done to me (male hormones/forcible raising as such) but because they kept me a secret, even from my own self! Did they perhaps feel ashamed because of my existence?:( ...That because of this reality, the bond between parent/s and child did not develop naturally and fully?. I, myself, feel "cold" because I don't have the so-called loving "feelings" for my mother that most children would have. My so-called (maybe?) biological father? not much feeling there at all...he was not there during childhood... supposedly gave me up for adoption at a very early age (as apparently did my mom) and I was remanded to my grandparents on mother's side, who were deemed my legal guardians according to German law. Later, at 6 yrs old, I was re-adopted by an Americal soldier whom my mother remarried (after divorce when I was 3 yrs old). I felt bad about being "snatched away" from my then loving grandparents (especially my dear grandfather) and "dragged" to the US.:( ....where the "nightmares" started:eek:
PS: Welcome to BLO!:)
Dana
kimflow
07-23-04, 01:42 PM
I am def. working on my feelings for my mom - they are almost non-existent. I can go a month or more without talking to her and we live two miles apart. I have no idea how to approach her about how I feel. We have had absolutely no discussion about it. I want to talk to her about it, to get a better understanding of what happened and to tell her how I've been feeling all these years. Doctors are not sure what went wrong. Some say PCOS, some say CAH, another says 'just one of those thangs.'
Hopefully, my therapist will help me work through my anger, sadness. I've known those emotions for so long I'm having trouble giving them up. Real happiness is foreign to me, maybe that's why it's taking so long to let go of the sadness and shame.
We'll see what happens. :)
But the only words of advice i try to live by are:
Feel no shame for what you are.
kimflow
07-24-04, 12:34 AM
"Feel no shame for what you are." EXCELLENT ADVICE!!
I so much agree...it is great advice. Thanks, Shodan!
Betsy
I am def. working on my feelings for my mom - they are almost non-existent. I can go a month or more without talking to her and we live two miles apart. I have no idea how to approach her about how I feel. We have had absolutely no discussion about it. I want to talk to her about it, to get a better understanding of what happened and to tell her how I've been feeling all these years.
I went through much of that for several years. Eventually we did, because I ended up forcing the issue on her. She ended up coming up for a visit and over a bit too much wine, learned an incredible amount of information. At the time, I was already starting to speak out and be more public with my own story and over the course of time, she went from questioning, "Why do you need to do this?" which was nothing more than her own shame and secrecy speaking to her really cheering me on. While I thought she was still slightly fibbing about "what I do"--that is using my freelance work as a journalist to deflect question, I learned otherwise after she died this past January. Knowing my mom, it doesn't surprise me as she could be a bit wily like that. Shortly before she died, she urged me to continue doing it.
Betsy
A lot of us must go through a... phase I suppose describes it for some of us, where we just wanna be angry at our parents (or sometimes just angry for the sake of it, guess who?)
I don't talk to my mum as much anymore, I don't let her touch me either, yet we can still joke and have fun, I wonder if my feelings will change too, or if this is the way it'll be?
As for the advice, i stole that from the opening theme to "The Dead Zone", but its the simple advice that sticks!
kimflow
08-04-04, 10:29 PM
thank you for the helpful comments. Any advice on how to get the conversation started? It just seems too late.
:sign16:
talking about our feelings about our parents is the starting point to healing.
We should try to say the things that we would want to say to mom and dad
here as a place to vent safely.
kimflow
08-04-04, 10:37 PM
thank you for the advice. i'm working on a letter to her. maybe once i'm finished i can share it with BLO. :)
prince....ss?
03-09-05, 07:09 PM
Wow this came up as a new post. Was going to reply but that was long ago .....never mind The blond has taken over my brain. :pat:
Dana Gold
03-09-05, 08:20 PM
Wow this came up as a new post. Was going to reply but that was long ago
Hey, no problemo!....that thread had a lot of interesting stuff to it that may be of value at this time to newcomers that haven't seen it before.
Dana
kimflow
03-10-05, 07:51 PM
Your story sounds similar to mine. I have never discussed my body with her. She never hinted to anything being "wrong" with me. The fact that she just let me grow up knowing I was different but never talked to me about it makes me angry with her. Who knows, she may have a good reason for not talking to me. I can't guess what, but I''ll listen if she's willing to talk. I guess I'll have to make the first move - when I get the courage. For my own mental health I need to confront her. I'll give her a chance to explain and I'll have to trust her if she says it was for the best. I'm not at the trust stage yet, but I'm working on it. Until I get to that point I'm not gonna be ready to hear her answer. Thanks for the reply. You can always reach me at kimflow@<hidden> if you want to chat. Good luck to you, too!
Here is the message that has just been posted:
***************
Long story made short, I did not want to discuss this with my mother,still
don't. I've been lied to for a lone time and due to my confusion and other
things I won't discuss it with her. My mother found that I have been hanging
around BLO so she knows that I know. I know she comes to visit here and
hopefully reads with an open mind. After all she did give birth to a freek but
that was her problem...not mine.
So if she has internet perhaps an introduction to BLO may help ease the blow.
Good luck
.
prince....ss?
03-11-05, 08:57 AM
Hello again kimflow,
That is strange perhaps Besty knows what happened here. I posted that message to you then realized the time date on it was 4 to 5 months old and thought you would have made a decision and already took an action.
I edited the post to what it is now but you still got the original. I’m glad you did and I hope my support and suggestion was able to help you in some way.
I would be happy to talk with you any time I’ll send you a quick email so that you can grab the address. I need to review the rules here about PM’s but just for the record any one can PM me also.
The post you edited may have been pulled from a cache--either the one I have set on our server to optimize usage and thus make things run faster, or from her own computer if she read it before you edited it.
Posts older than 6 months are supposed to expire and give you a message to start a new thread but I recently did a small security patch and probably broke it.
Betsy
vBulletin, Copyright ©2000-2008, Jelsoft Enterprises Ltd.