View Full Version : Finding Decent Doctors
I don't recall seeing a specific thread here about this subject so I thought we should have one. If there already is a thread for this please let me know. Anyway, I thought it would be a good idea to have a listing of some sort for doctors that we know of that are sensitive to IS conditions. I'd also suggest maybe having a list of docs to avoid but am not sure if that would touch on slanderous. Back to my point. If you know of any good doctors that are sensitive to us & to IS conditions, please, by all means, post what you can about them here.
Andi
Andi,
If you write Betsy she can give you a list of IS friendly docs in your area. I think there might be legality issues of listing good & bad docs on the board itself. Anyone has access to the boards and might choose to cause problems for doctors that are listed as IS friendly. What few docs that care about us should be protected.
Angela
OK, I see your point. I certainly didn't intend to be truoblesome.
Andi
It's really not a problem...
Most doctors who have your respect are quite honored by it---they are the ones who know and understand how badly some mistreated us.
we do maintain a small database of doctors and psychs that we know are IS friendly...usually we get the names from someone who is seeing one they like and they either ask if they can pass their names on to us or just tell us. I do try and get permission before officially adding them to our list.
We also get names from the docs themselves...usually via email letting us know that they support our efforts and then I ask to include them.
Some of the psych providers are listed on line in our psyche section. I never added the medical providers...no particular reason, I just never did it. I am hoping that the lists will be expanded and eventually online in a searchable database sometime this year.
With that in mind, please do tell us who is good. If they are not good, and you can share that as well as long as it is done in a non-slanderous way. If you would rather not share online, write me (with good and bad) so I can add them to our offline list.
Betsy
MARC R. LAUFER, MD
Assisant Professor of Obstertrics, Gynecology and Reproductive Biology
Harvard Medical School
Chief, Division of Pediartic/Adolescent Gynecology
Division of Reproducitve Endocrinology
Gynecologic Surgery
Brighams and Woman's Hospital
center for Reproductive Medicine in Boston
also at Children Hospital
This Doctor is very sweet, smart and understanding and is helping me now. My other doctors that I had as a child are much older then him but are still in practice. Dr Hendren, and Dr Crawford. Hendren can be reached at the Children's Hospital, and Crawford at Mass Genral Hospital.
Crawford is one of the leading Hermaphidite specialist in MASS.
Hendren, although he doesn't operate due to his age, is still in the Children Hospital as the Cheif of surgery.
Hendren is one of the best Children Doctors in the world.
He has many books written about him, the best book about him, one that is one of my favorite read is:
The Work of Human Hands
By: G. Wayne Miller
He has helped a thousand of sexualy ambigous children, and has separated siamese twins, preformed open heart surgery on new borns, and has successfully rebuilt children with deformities so severe that other surgeons would not dare risk a operation.
I have done lecturing for Hendren at M.G.H. to other Endocroligists under him.
I hope this imformation helps someone.
Good Luck!! to all! :D
Hi Jules,
With the exception of Laufer, who comes highly recommended, I'm having issues with the old surgeon.
I don't mean to offend, but I am having problems processing how doctors who spend a lifetime mutilating intersex babies and children can be all that great. In my mind, they have earned their living in blood money mutilating children that had nothing wrong with them except for genitals that don't fit what they think is normal. I'm sure few, if any, of their minor patients gave permission to have their genitals mutilated. Surgeries on children are done out of a misguided fear that we can never be happy with the body we were born with, paternalism, and homophobia.
I wonder if the children (now adults) who he mutilated without their consent would feel he's all that great. If I am wrong, please feel free to let me know why you feel that way.
Betsy
Now, from what I have read and studied on my own, Doctors have been only operating on ambigous children for about forty-five to fifty years or about the time that they learned how to put babys under sucessfully. Have you ever looked at the whole history of intersexed people long before surgery was a major option? In almost all cases from 1940 and back, intersexed people grew up in total isolation and rarely found partners. The truth is, before 1940 the highest sucide rate among people born with birth defects of any kind were, yes, you should have guessed it, people with gentic anomolies of the gentails.The sucide rate was staggering. I would guess that not being able a find a wife or husband durring times when this was very important to our cultue had a lot to do with it. Also this was a time when there was no support for these people as. Less then 5% of interesexed people before the days of surgery had a chance of anything like a normal life. Now ambigous gentails, boys with breasts, and girls with a penus have been around a lot longer then people have been operating on them, But most of them were concidered strange in the way they looked unclothed or in the way they acted. Even their parents back then disowned them and sucide was a big option. If not sucide then alot of them ended up (sadly)in mental wards. The whole idea in the first place of correcting them with surgery was so that they could fit in better with there family, find partners, and live a normalized life. The intersexed state didn't seem as complex when the first gential surgery was preformed, and the outcome was to help, not hurt these children. Now fifty years later the issues of being intersexed are much different. There are support groups and much better education about the topic. There was the Gay movement in the seventys, that helped to open peoples mind up about gender bending, and the different kinds of intersexed states are far more documented. Now in 2003 the issues of gentail surgery are much different. You can't just only say "Make it a girl" "Like they did in 1945. What they documented was that with corrective surgery, 20% of the children operated on had normal lives as adults. That was a improvment from 5% so they saw a reason to continue on with the operations.
Infants are genderless in the way they self preceive themselfs. How can you take away a right to choose your sex when at that age you don't know what sex and gender is never mind your own? It is up to the choice of well educated Doctors and parents to ask themselves which is the worse of the two evils. Being intersexed will be a struggle but can those struggles be made eaiser if the child feels when they are old enough to know the difference that their gentials at least look like other peoples? Of course with all the different intersexed states, not all of them need surgery. Some still develop well with theirpy and nurturing, love and understanding, but some intersexed children will never get that enviroment, maybe thats what the sucide and depression rate is still high for this condition.
Dr Hendren was best known for solving the colceal disorder, Being born with out a anus and rectom. In fact, as a child at nine years old I had to have semial vesticals removed. Many of my roomates in the hospital had the colceal dissorder and had to have the bags for stool and urine stapled on there stomach. He was the only surgen skilled enough to rebuild these children so not only could they go to the bathroom normaly, but looked normal well. I also had a roomate that i will never forget, a boy with two penuses. He was only six at the time and he pulled down his pants to show me both before and after the surgery. Hendren was also the first Doctor to teach other Doctors how to operate without removing sexual senitivity. And he made a gideline for what children should be operated on and what children shouldn't. Most children that passed through his hands were better off and over 20,000 children did, some with gentials problems, other with heart problems, and others with medical problems so unbeleviable it was nothing short a mircale that he was able to give them a normal life. I was his 55th operation in 1968 and he gave me a normilzed life. Are all doctors as gifted as Hendern? No! Many of them are still act like they are in the 1940's and without much thought will say"Make it a girl" and chop away. I think that is very sad. Some parents to are to blame as well, they don't want the responobilty of saying " well, maybe I should wait and see" or "I'm going to have to explain to my child that they are different" They want a quick fix which is a operation. Your a boy or a girl and thats that. You and I both know it is not that simple. Maybe there just not educated enough.
Dr Crawford is old but is very kind and has seen many many intersexed children grow up, some have gender problems their whole life regardless of wheather they had operations. Some of his paitance, like me are in that 20% and are living a normaized life. I would only post doctors that I feel are understanding. LAUFER, I must add stuided under Hendren.
SO that leaves us on the ground that the surgerys had the best intention when they started, but good intentions can pave the way to hell. Now Doctors need a little more common sence and less " Lets make it a girl!" Parents need better education about the effects of suregry. We may need more theirpy for children and less operations, but operations need to be kept open as a option in case the child wants to change gender, or in some cases when you can't tell the gender. I could go on and give you many pages about case historys and the history of the intersexed before 1940 but it is very sad and I think I made some points here.
WIthout a doubt some Doctors, and parents are clueless and make very bad choices for the intersexed and there faimlys. I say lets look at the doctors that have done right by us. they diserve credit from us for tring to give us better lives:)
Hi Jules,
I'm sorry I haven't had time to get back to this before now, and I need to make really brief as I am barely conscious. It was a really busy weekend (4 presentations...each 1.5 hours in three days and rehearsal for Monday all afternoon)
Anyways, I wanted to point out something from a paper that is posted on this website (and cutting and pasting instead of properly citing). It is from the paper that Dr. Nina Williams had published last year. Nina is one of the psychotherapists leading the way in the psychological care of intersex today:
)One of the few studies of the psychological adjustment of intersexed people was done by Money, the psychologist later responsible for the argument that intersex children should be surgically altered in infancy. Money’s study, done before the advent of modern treatment protocols, led him to conclude that his subjects were “living testimony to the stamina of human personality in the face of sexual ambiguity of no mean proportions” (in Colopinto,1999, p. 235). Inexplicably, Money would later call intersexuality, “the syndrome that stigmatizes the child as a freak - a sexual freak” (1987).
Nearly fifty years later, virtually the only long-term outcome study to evaluate psychological functioning found the picture was dramatically different for a contemporary sample treated with sex assignment, genital surgery, and psychological counseling of parents and child. Nearly forty percent of these intersexed children had developed psychopathology by age sixteen (Slijper, Drop, Molenaar, & Keizer-Schrama, 1998).
It's ironic that Money first thought we were quite well-adjusted and then decided we "needed to be fixed" (my quotes) I have a copy of that paper he wrote before he saw mutilation as a good thing. He expected to find a high suicide rate, instead he found happy, well-adjusted people.
You can read the whole paper at http://www.bodieslikeours.org/research/williams_2002_apa.html
I think you will be surpised to find out how well-adjusted we were before the doctors such as the one you mention began looking at our bodies as a problem.
Betsy
"I think you will be surpised to find out how well-adjusted we were before the doctors such as the one you mention began looking at our bodies as a problem. "
Betsy
___________________________________________________
No surprise to me.
Andi
Hi Besty!!!!!! thanks for writting back!! I'm going to push back gently here....
If only 20% of children operated led normal lives as adults, then that would leave a wide margan like eighty percent!! I'm not at all suprized by "forty percent of the intersexed developed pychopatholoigy" but it does not say if that directly is due to the surgery or they way they were treated by family and peers so to me the verdict is out on that one.
As you know I had major gential surgery, and I would have never known apart from my vaginal surgery that I was any different then a normal girl had I not found my birth pitcures. I have never been rejected sexualy because of how I look. How could that be? I never knew I was a half boy at birth. It had to do with the skill of my surgeon. If your clitoris looked, and felt just exacty like any other girls would you ever have even known that you had a amputation done in the first place? If people who had plastic surgery on any other parts of there body besides the gentials begain speaking out because they were not happy with how their plasic sugery turned out on them, got togeather with other people unhappy with their plasic surgery and called for a ban on ALL plastic surgery you might say "Hay wait, not all plastic surgery is bad," even though there may be a lot of bad plasic surgeons. You might even point out that people who had been burned say in the face had there lives given back to them by well trained plastic surgeons. If you were 100% happy with how your body or gentials looked, then the only issue would be how masuline or femmine you acted. Think about that. You are comming from a direction because you were unhappy with the choices made for you and the work that a surgeon did on you. I can feel for you, I'm not unsimpathetic. This web site may have ever come to be if all doctors were kind, if all surgeons could do plasic gential surgery as well as Hendren, If all intersexed people got love, and understanding from ther parents and peers. But they don't. It is very true though that a lot of intersexed people pass through the hands of butchers every day and I stand behind your cause that your far better off being left alone then to pass through a butcher.
As far as "are" history before surgery , sorry, from what I'm reading You don't hear about "The Happy intersexed storys from the 1920" We had it much worse before doctors started taking a interest in helping us. I've read a lot of posts here and I still feel the shame, the depression, and the mistrust that people have with Doctors,even if they have supportive faimlys. When I talk to other hermaphidites that have not been operated on I find that they do not like there jobs if they have them, get very mixed results from sex partners, have little to no interest in getting a college education, and for the most part are not very outgoing, sure you can say that non intersexed people have those problems too but why is it that I'm none of the above(Love my job, love school, always get good responces from lovers have lots of friends and I'm very outgoing) and I have had major reconstruction!! and yes some Doctors are just plane A-holes!
I feel that you are on one extreme of a end. A End with a good cause but a end none the less. You seem to say "Gential surgey or plasic surgery of the gentials is always wrong if it is not a threat to the childs life." Some Doctors will be on the other exstreme of that end, saying "It is no different then fixing a deformed jaw or deformed teeth so that the person at least will look normal and most people should have the surgery." I am in the middle of those two exstremes because that is where the truth lies most of the time.
Every single intersexed persons situation is different from all the other intersexed situations and you can't just put them in the catorory right from the start "No surgery!" without looking at all the fact about how that intersexed baby will be treated by there familys.
What if a very moral Doctor and a therapist could clearly see that the parents of a new born intersexed child were not understanding, and truely saw there child as a gross genitic freak! The strong odds will be that child is going to be abused and rejected as many intersexed are. If surgery (done correctly so that the child would never know the diffrence) was done so that the parents felt that there child was now normal looking and they could now feel a love and warmth for ther baby, can you see how in "that" case" the chances of that intersexed child growing up in a nurtring inviroment, would be better, then forgoing surgery and then letting the parents shun there child from love just because ther gentials were diffrent?:confused:
I told you in the last post that I do feel that parents share some blame in why gential plasic surgey can become usefull because it changes the way the parents look at the child, and yes I think that it is wrong that some parents can't nuture a intersexed child because of their issues, but thats why I stand behind the fact that every intersexed childs situation is very different. In a world where all parents were mature enough to deal with a intersexed child without surgery then i might say "yes, we should try and do away with a lot of the sugerys but we have always lived in a world where immature children, and immature adults are giving birth all the time, not ready for the challenges of parenthood never mind the challenges of raising a intersexed child. The rules of surgery change with each intersexed child based on the ambiguity, the understanding of the parants, and most of all the skill of the surgeons.
I want to ad as well, what about ME!! I'm very happy non-bitter intersexed girl! I had surgery! I'm glad I did, thank God I did. Doesn't my story of sucess show that not all gential surgey harms children? And it doesn't harm all children, I'm proof, am I not??
Hendren as done surgery on Saudi royalty to impoverished Americans and foreign children, thousands of them he operation on for FREE, like the saimese twins that were joined by the head and stomach that he operated on for free and they both lived and look normal as you and I. He was hardly out for "Blood Money"
Dr Hendren reminds ME everyday that "In the hands of visionarys and moraly dedicated doctors, miracles still happen!
I know, I'm one of them.
:D
RGMCjim
03-24-03, 08:30 AM
Most GLBTI community centers (not-for-profit just like this web site) keep referral lists of known safe medical personel, lawyers, social workers, employment agencies etc. These lists include positive and negative referals based on the track record of service providers as reported by the community. This is an OLD, OLD, well established service and the legal pitfals have been sorted out ages ago. Betsy probably has access to legal advice on what's do-able. If you check out Transssexual sites you will find reviews, professional critiques and photographic examples of varying surgeons from all over the world. Certainly we're not breaking new ground here.
As for whether it is ok for Doctors to label intersexed children as so hideously deformed that any amount of medical revision to turn them into something more acceptable (without their consent or desire or choice....) I must caution all. Every single intersexed person I have ever heard online in various rooms, on television, in groups like ISNA, in books who has been cut up and forcefully assigned a gender struggles and agonizes terribly. I have yet to meet an intersexed person who was NOT mutilated who suffers anywhere near as much. I have yet to hear from an intact intersexed person who has trouble finding sexual/intimate partners once they overcome their own fears of rejection, self-hatred and shame, and that includes myself.
This is not about medicine - it's about FREEDOM. Freedom to live in your own body, to explore your own identity, be allowed to be your own unique self and assert your right to be part of the family of humanity just as you are. This is about SELF DETERMINATION. Our society has fought, and won, against denial of this inalienable right for everyone from the blind, to the left handed and back again. We're next. This is about the right to choose and if "no thankyou" isn't an option then it's not a choice!! If you want surgery to alter the appearance of your genitals because it is what you desire for yourself, and you have made the choice to risk your sexual function and have done so free from co-oercion then GREAT!! EVERYONE should have that choice. That choice has been denied to most intersexed people. Personally, I would not choose surgery for myself. I like my body and others do too. I live openly as intersexed, freely, in love and service to others, educate where I can and avoid the hostile just like my son who has cerebral palsy, my clients who are deaf, my mother who is a woman, and all my gay brothers & sisters. People know I am a man with a tiny penis and a vagina and that my body is not exactly male or female and is a little of both. My life was hell before I set aside fear and shame - afterwards is a totally different story. No one MUST be altered to be something else. My life proves it. I bet there are a whole lot more of us out there. Study us.
Jim Costich
Yes I understand that the choice was taked away from a lot of intersexed people. I had my struggles to as a child not with sugery but with my mother and the fact that I share both male and female energy I did not have the choice of surgery yet I never knew I had it. There are so many diffrent points of view here depending on what your life exspreance is. Maybe some of my poistions do need to be thought over but i still beleve that the parents of the intersexed play a big role in how there children grow up. ANd if the parents are not open-minded your going to have problems sugery or not. Maybe surgery can help in some cases. I just don't feel that a lot of parents are as open-minded as your are Jim. also ther must be a sliding scale of options depending on the situation because there are so any diffrent types of intersexed condition none of who I feel are freaks. I just feel that the situation at least as Doctors and surgery and the parents are concerned should not be not on one side of the scale or the other.
remember I still in my learning curve about myself and the intersexed. All of you here at bodys are helping me to understand the issues of the intersexed
thanks for the reply
Hi Jules,
I think it's great that you are happy with surgery but I am confused about something. You wrote an email to me back in the early winter that indicates you would have been fine had they not done surgery on you (but were ambivilant about your own), that you think genital surgeries are unnecessary, and that all surgery should wait until the person his/her self could make that decision.
I can resend it back to you if you need.
So, anyways, I'm curious about what has made you change your mind?
Betsy
Adding to what Jim has posted (Nice to hear from you Jim!), over the weekend I presented with two young people. One has MRKH and has chosen not to have a vagina built. The other is quite different according to his own words, and said he is so grateful that he never had surgery. Ironically, his family has many doctors in it, and those family members thought surgery was a bad idea from the start.
Both are extremely well-adjusted and are speaking out.
Betsy
Sunshine1
03-24-03, 09:04 PM
It's my hunch that from reading earlier posts from Jules that she realized that she was caught between a rock and a hard place being that she had male chromosomes but had a genital area that wasn't anywhere looking male. Maybe, it was a lack of androgens that made it slightly easier for her to slip into a "female" role vs. a "male" role.
I believe she called what she had a "stump" in prior posts (forgive me if I'm wrong). Who here hasn't read the quote by that one doctor, "It's easier to build a hole then it is a pole" There was no way that those doctor were going to let a little boy baby out in this world the way she came into it and just like a little girl baby wasn't going to be able to keep the external genital that I had.
Because of my external genital, I was mistaken for a boy at birth with a clitoris that I voided out of and that's being nice ...calling it ambiguous well that wasn't really it either. It truly looked like a long clitoris that would of done rather nicely as a penis minus any testes and the vaginal area was completely closed over. Yet, this was only my external genital. I only have female chromosomes and only a uterus and ovaries. I was lucky that my surgery was held out until I was five to get a better grasp on what gender I "fell" into but the reality was that as a viable female and surgery was coming sooner or later and a menstraul cycle doesn't play all that well coming out of for really what could pass as a pretty darn good penis.
Although, I'm not happy about the clitoridectomy that was performed actually I don't see it as a clitoridectomy because because it didn't look that much like a clitoris. Medicine isn't perfect and it isn't always right BUT IN MY CASE what else was my choice ? To be raised as a BOY ? I thank GOD that choice wasn't made because I am defintely not wired to be a boy. So, the only other option was surgery and I do get going on how I wish that I never had to have any surgery but then I see pictures of girls that were as virlized as me and never had surgery but the catch is that they, even with only female chromosomes have not just passible external male genitals minus the testes, it is male genitals and they must live their lives as men.
I am venting and I guess my point is that each case and generation is so different and it's scary to hear people say this way or that way is how people with INTERSEX conditions THINK because we are all so different and each intersex condition is different. I hope that when people talk about Intersex medical conditions to a tantalized audience that they don't make broad comments using "we" and "our" because I brissle at sweeping generalization of any people. For a small example, I didn't agonize that much about my gender, sure I did for a little bit but it was more like speed bumps or rumble strips. I'm definitely not in the same orbit as the male gender, I now work 60 hours a week in a field that has about 98% men in it and I am reminded daily of how I'm nothing like them even though before I started this job I thought I had some male characteristics.
Even though the medical technology at the time and my degree of virlization were not compatable for the type of success in one area. I can be mad about that and I do have a wicked sense of humor and anger toward doctors/surgeons because I get frustrated that they couldn't do better but after all each case is different and they can only work with what you present in front of them. Also, at times I get angry that I had to go through any of this in the first place. I look at other people and they seem without a care in the world in regard to their body. To me it's like they take it for granted. I also realize that as far as medical conditions go CAH is not the end of the world and it could of been a lot worse. There is a postive to my surgery, the opening up the vaginal area and widening the small vagina, I can say the surgeons did a darn good job and it works just fine. Vaginal orgasms are not out of the question with someone that knows what he is doing. It seems like Irish men are the only ones that have any clue about that ( lol ).
Jules, I applaud your positive nature and I can't fathom how rough it was for you as a child but it seems like you are coming into your own as you go through your 30's.
Respectfully,
A.P. Morgan
OK, I've read the latest batch of posts & I think it all comes down to the individual & the unique situation of each individual.
From what I know of Jules, I'd say having surgery done was maybe the best thing for her. But for many others here, I think that it would have been better if their surgeries had been postponed until later in life or put off altogether.
Then there's those of us who haven't been put through surgery & for us, maybe it was a good idea, maybe not. Speaking only for myself I'll say I haven't always been happy with my body, but I think if I had been put through surgery when I was younger I might have resented it as much as some others here. As I said at the start of my message, it all comes down to the individual.
Andi
RGMCjim
03-25-03, 03:41 PM
I think that arguing the efficacy of surgery as an option to people who would like to alter their noses, breasts, genitals, penises, body shape etc. is a trap. It's not how good the surgery is. It's who makes the choice about what is done to whom.
The way I see it, how good/bad the surgical result is, how happy/unhappy the person is with the product they paid for is irrelevant to the circumstance of Intersexed children. What I see as relevant is that parents or/and doctors have altered a child's body without their knowledge, informed consent (frequently AGAINST the child's will) and have done so in a way that is irreperable and affects the childs very identity and ability to relate to others socially and intimately. These have not been decisions made by stewards of the child's health at an age when he/she can not make such decsisions. Intersex rarely affects health, and when there are health issues associated these rarely require genital mutilation to address. The majority of SRS done on intersexed children is done to preserve a myth that all males/females SHOULD, MUST fit the same pattern of physical attributes, social position, behavior and personality traits, and because someone finds intersexed bodies distasteful and feels justified in making them go away. This is a very basic social rights issue. Do parents and/or doctors OWN their children's bodies? Are they chatal property subject to the whim of their owners? Or are we people in our own right?
No where in medicine do we see surgical altering and forced identity assignment done, not as a treatment for a patient's health, but as a paliative for POTENTIAL social or parental revulsion. Rather than educate parents and councel them to help them reach an emotional peace with their unique child, part of the "treatment" of intersexed children has been to keep parents as ignorant as possible and isolate them from parents of other intersexed children. As a parent amoung many parents of handicapped children I can attest that the vast majority of parents, with help and support, can face ANY alarming physical difference or disease their child has. Parents of intersexed children have been sold short and vastly underestimated. If a parent can not deal with their intersexed child it is not the child who should pay for the rest of his/her life for the parent's inadequacy. If counceling fails, adoption won't!! Adoptable children are at a premium in this county. For every baby someone doesn't want there is a 10 year waiting list of adoptive parents in NY, it's been that way since 1980.
There was a time when people hid their senile relatives away in the attic and acted as if they had died. There was a time (between 1940-1965) when doctors "treated" masturbation in little girls by cutting off their clitorises because of social attitudes toward masturbation and it had been turned into an imaginary pathology. There was a time when children like mine were not even allowed in public schools because they are in wheel chairs - when I was growing up this was true. There was a time when deaf people had to fight in court to keep their children. There was a time when left handed children were beaten in school unless they used their right hands. Someday we will say that there was a time when they cut up intersexed children just to make them disapear because they were afraid of people with sex/gender differences.
One of the most important things I learned from wise old gay men and lesbians when I first came out is, "You are not responcible for others emotional problems about homosexuality." The intersexed are not responcible for the emotional problems other people have with gender/sex differences. The need to change, get over it, grow up. We need to claim our rightful place in the family of humanity and stop being door mats.
We are beautiful. We are worthy. We are valid. We are lovable. This is not altered by surgery/no surgery, gender identities, sexual orientation, hormones/no hormones, fertility/no fertility etc. etc. ad nauseum. We are our Creator's beloved children.
Jim
Very nicely put, Jim. Your post brings up good valid points. me, myself, I would always think that giving a intersexed child up for adoption sounds like a unfavorable situaton, I would avoid that if I could. I think that all faimlys should try to stay togeather and work out the problems if it is all possable.
Asking if a child has a right to there body, brings interesting questions up. And I admit I don't know the answers. A infant is so dependant on it's caretaker for life, shouldn't the caketaker as well have some rights of the infant?
Childrens view of reailty is not like it is in adulthood. Think about the secondary emotions in children like embarrassment, pride shame, guilt, and envy. If a very young intersexed child dooesn't get the right support very early in life when the biggest impact is, it is sad to think about all that can go wrong. What if the child DOESN'T like being sexualy different. Critical periods of development are passed in three or four years after birth. It could be to late to make some major changes after a child has already put themselfs in a sexual role that they might ot might not feel they belong in. There is clearly more them one view here and one can be right or both can be wrong in diffrent situations. As far as us being worthy and valid. Yes I think that all human beings have worth just be cause we are human beings. The worth we have doesn't have to relate to our happyness but to who we are, and what we have, our free will. But at what point do we have the right to use it. Can you give a child free will? At some point all of us lived under the will of our parents. We had to, we can't take care of ourselfs as infants and children. I would just like to think that at a time when I was to young to make good choices for myself and exercize my free will, that the people above me would make choices that are for my own good. It is hard to think back to how helpless we realy are when we are children.
Between the age of three and seven children do not distinguish their own perspective from that of others. I think it could a little dangerous to try and give a child then a choice about gender or a operation, they could gravely regret it when they are older. waiting untill teenage hood when hormones are really changing how your growing and looking is also to little to late. If the caretakers of a infant have good enough reason to make tough choices to operate or not to operate at what point is it not the parents choice? If that is the case would not a three year olds be demanding their rights?
I myself realy am getting good imformation here! Thank you all who have seen that I have tried to keep the posts postive and objective. the point is here, that we share our views and that we get to see and understand that two people can stand at look at the same problem and see it differently. But we can be objective about the different points of views and trying to find truth between two ends.
My postion has swayed a little Besty because I'm educating myself open mindedly. I'm willing not to just take one postion if more reliable imformation can prove that my first postion was wrong.
I'm not trying to sound like I'm condtrdicting myself but I guess I have as many questions as I have opinons if that makes any sence
There is no clear answer that fits every intersexed child it seems, but Jim as always you give me good food for thought ;)
Sunshine1
04-01-03, 08:56 PM
Hi,
I wanted to add that the surgery that I was pleased with was the one when I was 21. It opened up the vaginal canal from vaginal stenosis.
The other surgeries that I had, were done to sooth other people's nerves. A little girl that could write her name in the snow ? we can't have THAT ! As a five year old, I was fine and psych records stated that surgery wasn't warrented at the time. As a six year old ? who knows how I would of felt but they never gave me the chance.
I was driving around for work today and I kept passing all these pre- schools. It dawned on me that I went to pre-school with my non- standard genital area and nothing happened. There was no questions and I remember doing finger painting like the rest of the kids. This proves I could of waited a little longer for surgery (I did need surgery eventually because of the menstraul cylce that was coming) . It wasn't until a year later that I went in for the clitoridectomy, I will never understand how they thought that was going to help me but then it was never about me. The clitoridectomy was done to help me blend into their society. The vaginoplasties, the first one at five needed to be done over at 21 and that is the only one I'm pleased about.
I had to forgive the surgeon that did the clitoridectomy and the first vaginoplasty. Three steps from suicide ..well it was getting that way. It just blew me away that that I live in a world that despises babies that are born looking like me. On a good day, I have faith that this surgeon meant no harm. His actions certainly didn't help and it's a constaint reminder for me every day. I had one Endo say that genitals like mine are a trama to the child. You have no idea how irate I was with him. A child doesn't know anything like that is wrong untill the child is told otherwise. I let him know that it was a trama to the parent and not the child. Did that surgery change my idea of gender? Nope, I am who I am supposed to be. Gender was decided in my brain not by what was externally between my legs.
I was given up for adoption because the bio - family couldn't emotionally handle the CAH/ genital "issues" and my adotive parents were also fed a bill of goods about surgery and I consider it great that they held off until I was five. My parents did their best and I don't know what I would of done in their case myself. My DAD even read books on CAH and genital surgery. Well, back in my day it was called Adrenal Genital Syndrome and unfortunatly the only books around were from that S.O.B. at John Hopkins. I read somewhere that genital surgery now in the U.S.A. is best done at 3 months. That is how much they want to make us disappear. It doesn't work. Surgery doesn't make anything disappear, it only brings attention to it and we are still who we are.
Aimee
RGMCjim
04-02-03, 06:36 PM
Aimee,
There is rarely, if ever a reason for genital surgery in children. It is NEVER about the child and the adults who have problems are the ones who need help. Parents of intersexed, transgendered or gender variant childred need help coming to understand and be good parents to their children. Society doesn't prepare them for us. Due to our own efforts to raise consciousness, educate, enlighten and generally kick ass future generations of children and parents will fare much better.
I was lucky. I had no surgery. I was allowed to live in the gender I identified with (rather than the one I was initially assigned....). Today I would not chose surgery, I am glad it was never forced on me. I am perfectly happy with my tiny penis and usable vagina. If I ever wanted surgery it would have been MY CHOICE. But I didn't/don't. I thank God everyday my freedom to live in my own body and to make choices about it wasn't taken from me. I want ALL intersexed children to have the choice I had.
There was another choice in building you a vagina. Hysterectomy. Were you given a choice as to what you wanted for your body? A free choice - one where either choice would have been ok for you to make? If you weren't mature enough to make that decsision puberty could have been easily delayed until you were ready.
I think you are very wise to forgive those who thought they were doing the best for you. I would think it would be very healing for you. You, and so many others have been through a lot. We are a remarkable people having faced what we have.
Children can't make big choices about surgeries and need freedom to explore gender without being committed permanently. This is entirely do-able. I would like to see a time when all intersexed children are given the room to grow.
Jim
Sunshine1
04-02-03, 08:58 PM
Jim:
I feel lucky that surgery was put off until I was five, I figured at least there was an inking as to if I identified with my female chromosomes and/or gender and thankfully I did. There is some study that came out, I think Betsy has it somewhere that the majority of females with CAH that are as virlized to the degree that I was still identify with the female gender. I feel bad for the small percentage that don't. I have friends that are in med school and they tell me how doctors when they make decisions put all the pluses in one column and negatives in another. The only problem with that when it comes to any intersex condition what might be a negative or positive for the doctor and/ or the top notch ethical genital crisis management sex police might not be the same negative or positive for the person with the intersex condition.
Yes, I identify with the female gender and that came from the brain but yet having a genital area the opposite from that did nothing to change that. The external had no efect on the internal. Awhile ago, I believe you posted of a female with CAH that was forced into a gender role that wasn't her. Was it that they rasied her as a male but she tried living as a female as she got older and now she is not sure ? CAH is bad enough without any "major" gender issues. The best way to raise someone with any of these conditions is not to force any gender on them and they will show you what their gender is or lack of gender.
I think about that they could of tried to Bull shit me into being a guy and I thank my lucky stars that it didn't pan out that way. As for the vagina area which was completely fused over, it would of been easy just to pretend it wasn't there but it was there under the virilization. A small but true vagina was there hiding high and inside. I really enjoyed getting my medical records, it cleared up many of my questions. I have this one scar that was made because of damage by the surgeons. All the surgery left me bruised with a blockage and they had to get to my bladder by making a sub pubic incision leaving in a tube that connected my bladder with the catheter bag. Hummm...it makes you wonder because I went into the surgery having no problems voiding. I'm lucky that the brusies cleared and I only have a little bit of incontinance from the surgery. I 've talked with others that weren't so lucky.
Management of CAH basically sucks in my opinion, They are just throwing darts at a born and guessing. Although, I think that I have a decent Endo now ...well, at least one that might consider thinking outside of the box. I'm not sure if they had the drugs back then (1970's) to delay puberty. I think the stuff is call lupron. Puberty anyway starts early with CAH They couldn't even get the correct amont of prednisone for me. That crap made me fucked up anyway. Hydrocortisone just makes me blah. All those scum bags that I had to see only were interested in pulling apart and probing my genital area in one on one, two on one, and gang exams. They want to see how much pubic hair that there was also, nothing was done about it and all they did was note it in their chart. I had to learn about an Adrenal crisis from the Internet. You would think that the mother fuckers would of told me about an Adrenal crisis after I stopped taking the pred for awhile when I was twelve, No wonder I was so sick all those months. It wasn't until my late 20'S doing searches on the internet that I learned about an Adrenal Crisis.
That surgeon ..yeah .. I had to forgive him because he is just a puppet of society. Yes, he was the one that did it but it was the world that edged him on that someone that looks like me isn't acceptable. I've talked with with my friends that are med students and they agree that women with elarged clitorises should be left alone to decide but someone born as virlized as me? Well, they start to cough and turn pink as they say, "That's a judgement call." I dated a surgeon for awhile, again it was the same thing, "That's a jugement call" whatever because the irony of it all was that he was the biggest hypocrite in the world. His thinking and what he did in regard to sexual behavior was extremely out of the "norm" but yet he had a say ...a judgement call over people that didn't fit the norm. Dr. Freaky was in no position to judge anyone.
I had a nurse walk out of the room when I told her that surgery should be left up to the individual person, she thought I was crazy and told me that babies born like me looked weird. Another Endo that I told the same thing to could barely contain his laughter. The Endo that I have now, who actually might care gets uncomfortable when I talk like that. His eyes get all panicky and I don't want to alienate yet another Endo. Particulary, one that seems to have a grasp on CAH. Those are hard to come by where I live. My biggest hope in finding Endos is that they aren't rude and finding one that knows about CAH is a bonus. I gave up on them having any compassion over clitoridectomies. Me: The clitoridectomy was a butcher job. Endo: "Oh, did they do it wrong?" They don't relate AND IT'S OF NO CONCERN TO THEM, they just write a referral to a psychologist and they think that is going to make it better. Funny, the psychologist agreed with me and not them. I know it doesn't matter what they think but it still bothers me that they look at me like I'm nuts. I was thinking about mailing them the patient centered protocol from the ISNA but I don't think it would sink in.
Aimee
Jim and Aimee,
Great posts! Aimee, can I co-opt your judgement statement. It's something we are sometimes questioned on (by doctors, go figure) and I like your comeback to it.
Betsy
I agree very nice posts. I Read your story Besty on a link and I was very taken in by it. Even though we have very diffrent lives we are all still share a very unquie intersexed story, some very diffrent then others. I would hope that we all could get our angry feelings validated for what we had to go through. I have worked very hard to leave my painfull memories behind, not to blame anyone, becuse my intersexed state and my surgery was not my fault or my choice. The level of self-respect that I have now I must add comes from the choices I have made after the fact. I wonder though, if all of us would have realy become the people who we are now, strong minded and with story to tell if we didn't have our unquie lives?
RGMCjim
04-03-03, 08:42 AM
Aimee,
Judgement call. That's right, it's a judgement call - the patient's judgement. Not theirs. They have no hope of determining the gender identity of ANYONE and we now know why. Exposure (or lack of it) to testosterone in the fetal brain is being found to be responcible for gender identity and sexual orientation. Change the amount, change the timing during gestation and you get a result that is not male/masculine/heterosexual or female/femminine/heterosexual. It's impossible to predict the result.
More importantly, they have no business imposing a legally and surgically enforced fundamental change on a human just because they have social bias and emotional problems with gender/sex/orientation. No where else in medicine is "treatment" imposed on a patient in order to solve someone else's problems! Medicine is suposed to be about the patient - hence the Hypocratic Oath!
I have a friend who was extremely virilized at birth (pre-natal exposure to progestin like me, which gives very similar results to CAH). She had 5 surgeries in childhood and infancy. She was left with only vague sexual sensation that is often masked by pain. Her genitals are a mass of scar tissue as a result of post-operative infection. She pees out of her neo-vagina which has a strange turn in it that makes penetration almost impossible. (vaginal construction in children often gives terrible results) She has actively fought to try to become a woman in personality and identity for most of her life, thinking it was what she was "suposed" to be. She's now realizing that if you have to work at a gender identity it's not, nor will it ever be, yours. She's bi-sexual in as much as she can manage to figure out an orientation given all the physical problems and gender conflict. She thinks she would have fared better as a man but hasn't the energy to undergo more upheaval in her 40's.
I have another friend who has CAH. He was so virilized that the treatment he recieved at birth was surgery for hypospadias. He has a micro-phallus and calls it a phallo-clit (great term!). He has no vaginal opening. He was raised as if he were a boy but switched to living as if he were a girl for several years in childhood. That was less successful so he switched back. He has no idea what his body contains. Like so many of us he has had little REAL medical evaluation and his childhood records are lost. He is hypogonadal and only achieved puberty by taking testosterone. He later quit that because he was having some sort of reaction to it. His body shape is MARKEDLY female and he has breasts. His gender identity is neither man nor woman but rather something in between. He presents as a very effeminate man because of the way he dresses and his beard. Change that and the presentation is female. He is also bisexual but is more attracted to men than women. He is married. He is not confused. He has come to realize that his sex is not and can never be male or female. His sex IS instersex. In his case, so is his gender.
There are lots of doctors out there who are not laughing anymore. The more of us who stand up, speak out, and tell our stories - even if it is just to neighbors and friends - the less "mystique" will surround us. When people hear about our plight they are outraged and want to put a stop to the way we are treated. Our lives are a reality. We must demand that our reality must not be hacked up to fit into someone else's fantasy of what men and women are suposed to be like.
Jim Costich
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