View Full Version : Intersex- GED
Several days ago Emi wrote:
unlike Miriam, I believe that you can be both at the same time; while GID diagnosis excludes intersex individuals, GID NOS diagnosis can be made for intersex people who are also transsexual
Hi Emi!
I guess we say the same, but use other words. Someone with an intersex condition and an incorrect sex assignment can have an "artificial gender identity disorder" which could be classified as GID NOS (Gender Identity Disorder Not Otherwise Specified). When such a person would change to the opposite gender role, chances are that society will label that person as ‘transsexual’.
But… from a medical and psychological point of view it is something completely different because someone with an incorrect sex assignment is RETURNING to the original (at birth not correct recognized) gender role. I don’t know how doctors see this in the US but in The Netherlands this will make a huge difference in the treatment. I know three intersexed people here who were raised male and changed to a female gender role. Two of them only had to tell their medics they didn’t feel male and they were ‘allowed’ to change immediately. No long talks with a shrink, no real life test. And that’s the way it should be! When medics made a mistake, we should not have to suffer more from that mistake than necessary: they have to cooperate when we want to correct that mistake.
In September last year I did a presentation for 300 people involved with the treatment of transsexual people. At HBIGDA a couple of people seem to think that if they have seen enough transsexual people they can handle people with an intersex condition as well :( For those people it is important that we make a clear difference between a GID and a GID NOS, especially since GID now is the official medical name for transsexuality.
I even wonder if it is right to say that every intersexed individual who want to change to the opposite gender role can be diagnosed with a GID NOS. It is quite well possible people are gender dysphoric without having a gender identity disorder (plain or NOS). We should not forget that the DSM-IV is about mental disorders and I really can’t see what an incorrect sex assignment with an intersex condition has to do with a mental disorder. It seems that the authors of the DSM-IV don’t know what to do with people with an intersex condition because they have put us in one box with people who show transient stress-related cross-dressing behaviour and people who show a persistent preoccupation with castration or penectomy without a desire to acquire the sex characteristics of the other sex. (Both are subcategories of GID NOS.)
The medics I know now recognize that a GID in the meaning of transsexualism, is not possible in combination with an intersex condition. When we say that transsexuality IS possible with an intersex condition, we will shoot ourselves in the foot.
Sorry, if this is a bit too ‘scientific’ for some of the other BLO members. I feel a scientific approach of intersexuality is important because if we want to change our treatment we have to convince a lot of scientists, whether we like it or not.
Groeten, Miriam
Miriam wrote:
<< I know three intersexed people here who were raised male and changed to a female gender role. Two of them only had to tell their medics they didnz feel male and they were allowed to change immediately. No long talks with a shrink, no real life test. >>
I see what you are saying, but I think it should be available to everyone (well, everyone who wants it), not just people with such medical history.
I also believe that the criteria C of Gender Identity Disorder (the part that says intersex people can't be diagnosed with GID) should be removed. I think it would make some of the invasive medical examinations and tests unnecessary if doctors didn't have to rule out physical intersex condition before making the GID diagnosis.
Of course, doctors can still give the diagnosis of GID NOS to intersex people if they thinks that is more appropriate for that particular patient. But for majority of people seeking medical help in transitioning, it's one less medical hoops they have to jump.
<< At HBIGDA a couple of people seem to think that if they have seen enough transsexual people they can handle people with an intersex condition as well >>
It's so common that it's sickening. One person who used to be a volunteer for my organization was looking for a therapist to deal with the intense feeling of anger around his experiences, but everyone kept referring him to the "gender therapists" who specialize in helping trans people transition. So he went to see one of those "gender therapists" and told her what happened; the therapist was only concerned about "exploring" what gender he wants to be, even though that's not why he was in therapy. How infuriating--but this is so common.
<< We should not forget that the DSM-IV is about mental disorders and I really can't see what an incorrect sex assignment with an intersex condition has to do with a mental disorder. >>
I don't believe in the concept of mental disorder in the sense that there are objective criteria to determine what's normal and abnormal. I do believe however that such categories are useful in identifying specific needs people may have, and allocating resources to meet them (which, by the way, is the rationale some transsexual people support keeping GID in DSM-IV after homosexuality was depathologized). In that sense, if putting it in DSM-IV would help allocate more resources for people, I don't have any problem with it.
Good morning!! ALL
Can you in simple terms exsplain to me the diffrence between
Transgender
Transexual
intersexual
sexualy gender dysphoric.
It is not that I don't understand them, it just seems that people have diffrent meanings for the word then I do.
Are the terms subjective?
Is it one thing to "feel" that you belong in one of those catogorys and another to have someone tell you that is what you are?
Example: I "feel" transgendered vs I'm told that I'm transgendered.
Hi Jules,
I will try to give some very short definitions. Bear in mind that they are MY definitions and that on each of them complete books have been written.
Transgendered
An umbrella term including just about anyone who acts or thinks in a manner not socially approved for the gender assigned him or her at birth. T* is an abbreviation for all the variants of trans-whatever: TV, TG, TS. ‘Trans’ is a newer term that avoids the frequent misunderstanding between the meanings of ‘transgendered’ and ‘transgenderist’.
Transgenderists, TG
People who live in the social role opposite that of the sex assigned at birth, but who do not intend to have surgery, and may not wish to take hormones. Note that the term overlaps somewhat both with transgendered and with transsexual. Note that to refer to someone as ‘transgendered’ does not in any way suggest that they are, or should be, transgenderists.
Transsexual people, TS
People born with an anatomy that someone decided is standard for male or female and who feel they are born in the wrong body. The term transsexualism is outdated and replaced by the term Gender Identity Disorder (GID).
Intersex people, IS
People born with an anatomy or with chromosomes that someone decided is/are not standard for male or female. As I don't see intersex as an identity, I prefer 'people with an intersex condition'. I can live with 'intersex people', but I hate it when someone calls me an intersexual.
Gender dysphoric
Disphoric means distressed or unhappy. So someone who is not happy with his/her gender is gender dysphoric. When the gender dysphoria is so strong that it will harm ones mental or physical health, it has become a gender identity disorder. In my opinion people with an intersex condition can be gender dysphoric when they were assigned to the incorrect sex. If they change their gender role before the incorrect sex assignment has damaged their health, they can’t be diagnosed with GID. When they were not informed about their condition they can get a kind of artificial GID.
Yes, the terms are subjective as many people give them a meaning that suits them best. A small group of T*-people claim the term IS (they say TS is a brain-level form of IS) because they think IS is more accepted by society. This thread shows us that quite a few people think that IS is about gender. In my opinion IS is a medical condition which can have a huge influence on your gender, but those gender-related problems are only secondary to the main problem. And the main problem is that some people have decided that our body and/or our chromosomes are not standard for male or female. (So it is not the intersexuality itself that is the problem).
Nevertheless, medics use rather rigid definitions for intersex and GID. You are only intersexed if you have characteristics of both sexes. That definition is even narrowing at the moment. A growing group of parents and medics want to remove CAH from the intersex conditions. And last week I spoke with a very influential group of medical professional who doubt whether Klinefelter is a ‘real’ intersex condition.
Groeten, Miriam
Sophie338
04-13-04, 09:29 AM
Hi Miriam :)
"Nevertheless, medics use rather rigid definitions for intersex and GID. You are only intersexed if you have characteristics of both sexes. That definition is even narrowing at the moment. A growing group of parents and medics want to remove CAH from the intersex conditions. And last week I spoke with a very influential group of medical professional who doubt whether Klinefelter is a ‘real’ intersex condition."
I dont know if I am right or wrong over this. But I get the distinct feeling that this narrowing somehow give surgeons a licence to surgically "intervene" (Mutilate). Then when they are challenged about this they can somehow claim that the "surgery" was a "minor correction" to "re-enforce an "established" or "identified" sex". (a bit of spindoctoring on the medic's part considering that this is what they have been doing anyway when butchering kids)
I have seen some "clinical management" guidelines play a similar game. where terms like "unquestionally male" or "unqustionally female" often preceed a reccomended fixed course of action, (usually IGM) then there is a token jesture where they claim that "intersexes" or "Ambiguous infants" (How depersonalising can it get) can be left alone for "further assesement".
To the sentinels of this world that would probably be taken as "redefining intersex identity" but to someone like me it seems more like keeping baby butchers in a job. Call the child a given sex without any fear of contradiction and parents are more open to persuasion about "options" involving IGM. Which will still result in injury, complications, painful "aftercare", shame and secresy.
I am probably wrong, but that is the impression I get. I still just find the medical profession difficult to trust.
All the best
Sophie.
Jules wrote:
<< Can you in simple terms exsplain to me the diffrence between
Transgender
Transexual
intersexual
gender dysphoric. >>
"Transgender" could be just about anything, and since I'm not talking about it, I'll just skip it.
I use the word "transsexual" to mean people who wish to or have made the switch to live in a gender that is different from the assigned sex of rearing. I suppose that people whose sex of rearing was changed (not by their choice, but by parents' choice or at doctor's suggestion) who wish to go back to what they were assigned initially would be a borderline case, but I don't think that the word "transsexual" needs to exclude intersex people who wish to transition or have transitioned if she or he is assigned and raised consistently in one gender throughout childhood.
"Intersexual" - Like Miriam, I don't like this term as a noun; I also don't like the acronym "IS" because it's a transgender dialect for intersex (for some reason, trans-world has a habit of making every category into two-letter acronym). In fact I don't like the word "intersex" either but I'm not sure what else to say. I'm happy with Miriam's definition, and I agree about "people with intersex condition"; when I write articles, I try to use "people with intersex conditions" when I mention it for the first time, then "intersex people" for the rest of the article.
"Gender dysphoric" - Stupid word invented by doctors because they don't understand that most transsexual people are quite happy with their gender; they just don't like how their bodies look or how the society treats them.
Miriam's understanding is technically correct in terms of how DSM-IV sets it out: according to DSM-IV, intersex people are excluded from the category of "GID," but can have "gender dysphoria" (and be diagnosed with GIDNOS). However, I don't think it's suggesting that there are any real clinical differences between the two: it's just that they can't call it GID because of the peculiar way they defined GID in the first place.
I read the ICD-10 criteria for "transsexualism," and found its rule is a bit different. Under ICD-10, one cannot be given the diagnosis of GID if gender dysphoria is a symptom of "chromosomal abnormality." I'm not even sure how to interpret this, because many intersex conditions are not caused by chromosomal abnormality, and besides I don't think chromosomal abnormality causes gender dysphoria. Most likely, they were probably under the misguided assumption that all intersex conditions are caused by chromosomal abnormality, and that gender dysphoria among intersex people must have been caused by their abnormal chromosomes (why do they even think this? it's obvious that it's not caused by chromosomes, considering the fact vast majority of gender dysphoric people have normal chromosomes!) DSM-IV is more reasonable not just because it actually includes (or rather, excludes from GID diagnosis) intersex conditions other than "chromosomal abnormalities," but also because it only require that intersex condition is concurrent with the dysphoria, regardless of cause and effect.
Miriam wrote:
<< In my opinion IS is a medical condition which can have a huge influence on your gender, but those gender-related problems are only secondary to the main problem. >>
In general, that's what I tell people also. However, not all intersex people have the same experiences and there could be individuals for whom gender-related problems are more pertinent in their lives than other things. So I think it's important to clarify that we are talking about what our priorities are as a movement, and not necessarily for every intersex person.
<< And last week I spoke with a very influential group of medical professional who doubt whether Klinefelter is a "real" intersex condition. >>
Actually, that's not uncommon. Endocrinologists generally define intersexuality as the problem of endocrine system, so their definition of intersex is much narrower than others'. Under that definition, only (classical) CAH, AIS, mixed gonadal dysgenesis, and a small number of other conditions quality as intersex; it would even exclude MRKH.
As an example, here's the first line from a medical paper recently published in Journal of Paediatrics and Child Health: "Unusual genital appearances in premature infants can be easily mistaken for true ambiguous genitalia"--what in the world does that mean? So the genital has "unusual appearances" but not "true ambiguous genitalia"? You mean it's a fake ambiguous genitalia? The answer, of course, is that the authors believe that non-endocrine conditions don't count as intersex, or "ambiguous genitalia," even if the physical appearance is, well, ambiguous.
Hello Sophie,
I’m afraid that this post will be rather controversial. I’m sure Emi and Betsy will disagree with me, but I hope everybody will understand that there is a difference between how activists in Europe and the US communicate with medical professionals. Basically the message is the same: don’t operate. But when we give a closer look to what we communicate in Europe and what the US activists communicate, there is literally an ocean that separates us.
I think medical professionals are looking for ways to predict the (final) gender of a child. If it is possible to predict this with 100 percent certainty AND if they have surgical methods that prevent the loss of sexual feelings, then they think it will be OK to operate. And I agree with them on that. BUT… I think in many cases it is impossible to predict a child’s gender and I’m not convinced that the surgical methods are perfect.
It is like dr. U. Drews said at the Lübeck symposium last week: surgeons know how to work with wood, but they can’t make a tree grow.
I don’t have enough knowledge about CAH but in the Netherlands newborn children are tested for CAH and that will prevent girls with CAH from further virilization. But does that mean that CAH isn’t an intersex condition anymore? Does that give doctors the right to reduce an enlarged clitoris? I wonder what the androgens did for the brains of those girls. Are we working on a whole new class of FtM transsexuals? I really don’t know. As I said before I don’t have enough knowledge about CAH, but I think that more research has to be done before we can say that we can remove CAH from the list of intersex conditions.
I see a similar problem with enzyme disorders like 5ARD and 17BHSD. Because of some publications about groups in the Gaza Strip and the Dominican Republic there is a growing group of medical professionals who think that these children will change to a male gender role. But what is the influence of the better social position of males in the Gaza Strip and the Dominican Republic? I’ve seen xy-girls in the Netherlands with 17BHSD who are very happy with their female gender role. Now you can say that it is better to be raised male because then they won’t ‘fix’ your genitalia. But that is not true, boys with a micro penis (or is it a small clitoris) receive topical androgen treatment to make their penis grow, even though the doctor involved told me he doesn’t have enough insight in the genital development of undervirilized males. I consider this to be surgery without a knife, especially because with enzyme disorders you are 100% sensitive to androgens.
But we should also understand that not every hypospadia is an intersex condition. For that reason I feel it’s too easy to say that all surgery should stop. Medical professionals try to help us and it is obvious that they make mistakes. But there are also many people who are happy with their treatment. When we ask doctors to stop surgery, we ask them to do nothing. That means that we will never again see intersex people who regret that their doctor took a decision. But doing nothing will also mean that some patients will regret that their doctor did nothing. In other words: by doing nothing doctors would be responsible for the same errors as we've seen before, only with another group of people.
Personally I think there is a very small group where we really don’t know what to do. Is it a small penis or a large clitoris? Will the child develop a male gender identity or a female gender identity? We already know that the genitalia are not usefull when we want to predict the gender identity. THAT is the group were we should do nothing except listening to what the child says when it is getting older. In some cases it even might be necessary to delay puberty to give the child more time, but even that is a decision!
Therefore I think we need more research and doctors who will listen to both the people who are happy with their treatment in the past and to people who say that doctors did something wrong. That way the medical professionals take their responsibility. As long as he can prove he did everything possible to prevent a major mistake, a doctor who uses his knife is not necessarily a bad doctor.
Groeten, Miriam
I'm just waking up so can't even think about replying to this yet, but it is a fascinating read over my morning tea. Because it is so fascinating on it's own, anyone have a problem if I split it off from the other part into it's own thread?
Betsy
Go ahead, doctor, use your knife :)
Miriam
*Gulp*...Well, I saw it ONCE in a textbook.
Betsy
gee, they didn't tell my about that little E complication---"sorry kiddo---you'll be fine"
Emi Wrote:
Miriam wrote:
<< I know three intersexed people here who were raised male and changed to a female gender role. Two of them only had to tell their medics they didn’t feel male and they were allowed to change immediately. No long talks with a shrink, no real life test. >>
I see what you are saying, but I think it should be available to everyone (well, everyone who wants it), not just people with such medical history.
I also believe that the criteria C of Gender Identity Disorder (the part that says intersex people can't be diagnosed with GID) should be removed. I think it would make some of the invasive medical examinations and tests unnecessary if doctors didn't have to rule out physical intersex condition before making the GID diagnosis.
Of course, doctors can still give the diagnosis of GID NOS to intersex people if they thinks that is more appropriate for that particular patient. But for majority of people seeking medical help in transitioning, it's one less medical hoops they have to jump.
I’m afraid this will be a bridge too far. HBIGDA et al. will never say that anyone who wants to change to another gender role can do that without seeing a shrink and without a real life test. If they drop criteria C it will not help transsexual people, but instead it will convict us to the treatment transsexual people already get.
Besides, I can’t imagine a medical professional would need more than, let’s say, 20 minutes to find out whether somebody has a physical intersex condition or not. I’ve met an amazing number of people with a physical intersex condition and they all have a different story, but they also have one thing in common: they can tell you stories about the medical professional you will never hear from other people. Shame, secrecy... you know what I mean.
Groeten, Miriam
Dana Gold
04-13-04, 12:46 PM
quote:
"listening to what the child says "
So obvious, yet my viewpoint is that this is rarely done. And yet, because of society's label of abnormal, the child may FEAR to speak on his/her own behalf, for fear of parental/peer rejection. Children innately want to please their parents, so they can be accepted and loved. It seems that there is too little educational resources that are (allowed ?) available to parents to guide and enlighten them to the possibility that there should be a HOLISTIC approach to the child's rearing. One that takes into account both physical and psychological (gender included) health.
The requirement for such would be a TEAM of medical/psychological staff well versed in intersexed conditions (NOT just the "sex characteristic" aspect) of children to insure that no "harm is done". I have read that some places do this.....ones that obviously are not driven by notions of intersex, homo, and gender phobias. ....Perhaps I am profoundly naive in that to this day I cannot fathom why human beings still cling to ways of thought and belief that dictate that anything besides hetero male/female is deemed something which ranges from " a joke" to an abomination of God. What has enslaved their psyches that they blindly obey such dogmas and simultaneously vomit "human rights" and love for fellow man-kind. Such people need to "Free their Minds , so Their 'Asses' can Follow"
quote:
medics use rather rigid definitions for intersex and GID....
RIGID, why the hell is rigidity and definitions applicable to children.....the child is still growing and in a formative stage of his/her life......restrictive and premature medical/psychological Tx may interrupt the natural evolution of the child..thus a "ersatz" human being is produced which is then labeled with GID or other "developmental abnormality, when in reality it is the treatment (Tx) that is ABNORMAL. ..NATURAL is the key word here....medical/psychlogical Tx IS unnatural and disruptive if it is in the parents'/society's best interests and not the child's. Again the necessity for a team of staff to deal with the "problem" in a holistic manner. Cost??...society (here in the US) can spew billions of $$$ into overseas ventures (war, business {pissi-ness I call it :rolleyes:} ), why not some $$ for this....children; the most precious "resource" and the future.
I speak idealistically, and in a previous post someone mentioned Utopia. Yyet I firmly believe energy directed toward the ideal will result in more positive change than "settling for less".
Dana :(
"borderline" :rolleyes: human being
Sophie338
04-13-04, 12:51 PM
Hi Miriam :)
Controversial, errm thing is I am a coward :(
OK Personally, while I am in Europe, I do feel a little more inclined toward Emi and Betsy's position in terms of the surgery. But you know why I feel so strongly about surgery so I know you wont find what I am saying out of characer for me.
"I think medical professionals are looking for ways to predict the (final) gender of a child. If it is possible to predict this with 100 percent certainty AND if they have surgical methods that prevent the loss of sexual feelings, then they think it will be OK to operate. And I agree with them on that. BUT… I think in many cases it is impossible to predict a child’s gender and I’m not convinced that the surgical methods are perfect."
Well yes, I certainly agree with you in terms of being unable to predict gender. I have to be truthful though, talk of "Predicting gender" (I am thinking of Eric Vilain here). Unnerves me a little.
anyway... :) And the surgery is far from perfect. I dont like it if I am honest.
"But we should also understand that not every hypospadia is an intersex condition." For that reason I feel it’s too easy to say that all surgery should stop. Medical professionals try to help us and it is obvious that they make mistakes."
erm splutter! splutter! yyyes! they make mistakes alright.
"But there are also many people who are happy with their treatment. When we ask doctors to stop surgery, we ask them to do nothing. That means that we will never again see intersex people who regret that their doctor took a decision. But doing nothing will also mean that some patients will regret that their doctor did nothing. In other words: by doing nothing doctors would be responsible for the same errors as we've seen before, only with another group of people"
Well given what happened to me, I will find it very hard to answer your point in objectiveley, not so much in terms of what you are saying, more in terms of my own expereinces. I will try :)
I think the concept of "normalising at all costs" is something that really cannot be left out of this. Again I may have read it wrong when I saw the (Secret Intersex) documentary. I remember this woman whos child had CAH and this surgeon who just could not wait to get in there with the scalpel. (The child had no say of course). The kids mother was not convinced that the full "procedure" was a good idea. so the surgeon (his words) "Came to a compromise and just worked decided to work on the Vagina". (Still, of course not a single word from the child, because the child cannot say anything being so young).
Emi of rings true to me when saying
"So the genital has "unusual appearances" but not "true ambiguous genitalia"? You mean it's a fake ambiguous genitalia? The answer, of course, is that the authors believe that non-endocrine conditions don't count as intersex, or "ambiguous genitalia," even if the physical appearance is, well, ambiguous"
I mean surgeons just cut up what they see, regardless of the underlying causes. Tweaking the terminology wont change anything. Myself I have serious ethical reservations about concepts like "legitimate intersex" and "fake intersex" especially when some surgeon is weilding a scalpel.
This is based on the rationale I am reading from the medics.
Am I legitimate in saying they should have left me alone because my endocrine system was involved? Or not legitimate because it was a hypospadia repair?
I appreciate that these decisions may be difficult for medics (But my mistrust says otherwise), but whatever intentions they had, I was left for years in pain feeling as if the medics acted out of malice. That is a pretty bad state to be in really. If people were doing thier best, would this have been the intended outcome? (I said objectivity will be hard for me).
For me the cold reality is that surgery is not perfect, in fact far from it. But there are also ethical questions about deciding and thier entire life by such arbitrary practices.
It is a painful debate for me so please forgive me if I put my foot in it. :)
All the best
Sophie.
We had someone posting here several months ago who is IS, original birth certificate says female and as an adult wanted vaginal surgery. Unfortunately for her, she had many doctors trying to force her through the HBIGDA standards of requiring letters from shrinks saying she was living as a female...which she was a female---no question about it. I think she finally found someone in Pittsburgh but the 'standards' of care forced upon her was absurd. Ironically, had she been under the age of 18, it wouldn't have been a problem at all in this country.
Betsy
"But there are also many people who are happy with their treatment. When we ask doctors to stop surgery, we ask them to do nothing. That means that we will never again see intersex people who regret that their doctor took a decision. But doing nothing will also mean that some patients will regret that their doctor did nothing. In other words: by doing nothing doctors would be responsible for the same errors as we've seen before, only with another group of people"
I don't see this as that big of a problem. Surgery once done is generally irreversible (for example, my clit can not be fetched from the trash or some lab jar and sewn back on). At least those who wish it were done still have the option to get it done. Actually, I think allowing the person to choose for themselves surgery is a great honor that parents and doctors can bestow on a person with an IS condition. It's also respectful of the parents and doctors by recognizing that they don't have all the answers.
Betsy
Dana Gold
04-13-04, 01:08 PM
quote:
"force her through the HBIGDA standards of requiring letters from shrink"
The Harry Benjamin SOC (Hairy Benny) is just another system geared to preconceived notions of GID and "related" conditions. It is not a flexible enough application that can adequately provide the actual resources needed for anything other than what the med/psych community regards as a "standard" transsexual. It has remained s/w rigid in its approach even toward "classic" GID and I believe is severely "handicapped" in dealing with intersexed persons who have gender issues. The pitfalls of an "all-inclusive" system.
Sophie338
04-13-04, 01:13 PM
Hi Betsy :)
"I think allowing the person to choose for themselves surgery is a great honor that parents and doctors can bestow on a person with an IS condition. It's also respectful of the parents and doctors by recognizing that they don't have all the answers."
Yes :) the one thing that made me feel human was the time that I had a pen and a consent form.
I just wish the medics would get away from all the spindoctoring and all the debates about nomenclature. And adopt this straightforeword and respctful approach.
beautifully put :)
All the best
Sophie.
Dana Gold
04-13-04, 01:16 PM
quote:
"Yes the one thing that made me feel human was the time that I had a pen and a consent form. "
That "one thing" is called FREEDOM:)
Hi Betsy,
I don't see this as that big of a problem. Surgery once done is generally irreversible (for example, my clit can not be fetched from the trash or some lab jar and sewn back on). At least those who wish it were done still have the option to get it done. Actually, I think allowing the person to choose for themselves surgery is a great honor that parents and doctors can bestow on a person with an IS condition. It's also respectful of the parents and doctors by recognizing that they don't have all the answers.
Don’t say that to people with 5ARD, 17BHSD or PAIS. When you don’t remove the testes they will virilize at puberty. That’s great if you identify male but it really sucks if you identify female. Doing nothing can be as terrible as doing something. Severe virilization is also irreversible...
But please don’t forget that I never said surgery is an option in every case. My point is that the adagium ‘stop unwanted genital surgeries’ should be reconsidered if we want to have an open discussion with the medical professionals.
When I talk to medics I find it extremely difficult to separate my experiences from what’s happening today. I’m 45 yo now and I know that I can’t use my experiences as a weapon because that would be completely counterproductive. I learned to deal with my negative experiences in another way than by telling medics who were school kids when I was treated that ‘they’ did it all wrong.
Groeten, Miriam
Dana wrote:
"listening to what the child says "
So obvious, yet my viewpoint is that this is rarely done. And yet, because of society's label of abnormal, the child may FEAR to speak on his/her own behalf, for fear of parental/peer rejection. Children innately want to please their parents, so they can be accepted and loved. It seems that there is too little educational resources that are (allowed ?) available to parents to guide and enlighten them to the possibility that there should be a HOLISTIC approach to the child's rearing. One that takes into account both physical and psychological (gender included) health.
The requirement for such would be a TEAM of medical/psychological staff well versed in intersexed conditions (NOT just the "sex characteristic" aspect) of children to insure that no "harm is done". I have read that some places do this.....ones that obviously are not driven by notions of intersex, homo, and gender phobias. ....Perhaps I am profoundly naive in that to this day I cannot fathom why human beings still cling to ways of thought and belief that dictate that anything besides hetero male/female is deemed something which ranges from " a joke" to an abomination of God. What has enslaved their psyches that they blindly obey such dogmas and simultaneously vomit "human rights" and love for fellow man-kind. Such people need to "Free their Minds , so Their 'Asses' can Follow"
Dear Dana,
Things are changing. It is like you say: we need TEAMS and I can tell you that we already have those teams in Europe. Some are almost perfect (In our eyes) and others are a bit ‘conservative’ (as in old fashioned, outdated) but they are willing to listen. But now we have to come with arguments and not only a one-liner about unwanted surgery. Such a discussion should not be used as a therapeutic session to overcome our own negative experiences. In stead we have to be as open as can be and ‘forgive’ (but not forget) the mistakes from the past.
When I talk to medical professionals from the USA and Canada, they always expect that I start to yell at them. ISNA did a wonderful thing for the Intersex community, but now is the time to change strategies. We can keep our position and see how the medics will change without us, or we can start to talk with them. In Europe this is already happening.
Groeten, Miriam
Originally posted by Miriam:
I don’t have enough knowledge about CAH but in the Netherlands newborn children are tested for CAH and that will prevent girls with CAH from further virilization. But does that mean that CAH isn’t an intersex condition anymore? Does that give doctors the right to reduce an enlarged clitoris? I wonder what the androgens did for the brains of those girls. Are we working on a whole new class of FtM transsexuals? I really don’t know. As I said before I don’t have enough knowledge about CAH, but I think that more research has to be done before we can say that we can remove CAH from the list of intersex conditions.
It's not quite like that. CAH is a genetic condition where both parents have to carry the gene. That's also why it is more prevelant in some ethnicities. They can test for the gene but it is a time-consuming, costly test. Usually what happens is one baby is born with CAH and intervention is an option for future children by the same parents.
The "intervention" involves giving megadoses of dexamethasone to the mother during subsequent pregnancies. It needs to be given quite early in the pregnancy. As dexamethasone is a powerful drug, it causes physical problems for the mother---depression, major weight gain among them. Somewhere around 8 weeks (I think it's 8 weeks) they test to see if the baby has CAH because only 1:4 children of carrier parents will have it. If not, they stop the dex. If so, the dex is continued and then around 16 weeks (again, I think it is 16 weeks, I could be wrong on the week part in both statements) they do a CVS (an amnio test) to find out the sex of the child. If male, the dex is stopped. If female it continues.
The dex is supposed to counteract the androgen bath, thus reducing (but not always eliminating) the degree of virilization. So, if the child would be a Prader 5 (the most amount of virilization) she may come out a 2 or 3--what they medical community calls slightly virilized.
As with surgery, there are no long-term studies about the effect the dex has both on mother and child. In my mind, this is as foolish as doing surgery without longterm follow-ups. I have some major ethical concerns over the use of dex without longterm followup as it is seeks only to eliminate a cosmetic difference. It's assuming that the virilization is so horrifying that it is better to take the unknown risk the dex may cause than to risk having a girl with a big clit. If it cured CAH I would be for it as CAH can be a dangerous disease (the metabolic part---not the virilization) but it doesn't do that.
The newborn testing for CAH that we often hear about in the news is generally for the benefit of boys born with CAH. Most girls with CAH are diagnosed quickly after birth due to the virilization There are some girls with CAH who are pronounced male and often sent home as male because no one bothered to figure out why they don't have obvious testicles. With boys, there are no signs until they suffer from an adrenal crisis in their first month of birth. That crisis can lead to the death of the child or mental retardation if not caught soon enough.
Betsy
Don’t say that to people with 5ARD, 17BHSD or PAIS. When you don’t remove the testes they will virilize at puberty. That’s great if you identify male but it really sucks if you identify female. Doing nothing can be as terrible as doing something. Severe virilization is also irreversible...
and
When I talk to medics I find it extremely difficult to separate my experiences from what’s happening today. I’m 45 yo now and I know that I can’t use my experiences as a weapon because that would be completely counterproductive. I learned to deal with my negative experiences in another way than by telling medics who were school kids when I was treated that ‘they’ did it all wrong.
Good points to both...
On the first one, I think the point you make about it being great if you identify as male is key. Openness and honesty is a good thing to include. I truly that most children will tell you their gender at an early age if given the freedom and power to do it. On the other hand, if you have parents and doctors frantically trying to reinforce a gender that may be wrong, the child will tell the parents that is what they are because it's what the parents want to hear all the while knowing inside it is not what they feel.
Even with these surgeries, if done during infancy, it is assuming the parents and the doctors know what gender the child will be comfortable in. If delayed until the child freely expresses his or her own gender (without rigid reinforcement from the parents and doctors), the child has a say in the matter even though it may not involved actually consenting to the surgery per se. We as human beings possess a great sense of self and identity prior to puberty and I think paying attention to that is key. Unfortunately in our paternalistic society the child is given very little freedom to do that.
On the second point, I applaud you for breaking through that wall as I know how difficult it is to do.
Betsy
Dana Gold
04-13-04, 02:15 PM
quote:
"We can keep our position and see how the medics will change without us, or we can start to talk with them. "
Yes, Miriam, I agree. Dialogue and having the med/psych people listen with an unrestricted mind is the strategy for the "new age".....although the US is not as progressive as Western Europe, it is changing s/w.....but I fear that the "moral majority/fundamentalism" here in the US (of what RCMJim spoke of in an earlier reply) will try to "crush" that progress. Sometimes, I miss Europe and wish my "parents" had left me with Opa and Oma in Neckarsulm, and not brought me here (US) to what I used to think of (and still s/w do) as "The Bad Place":(
Thanks goodness for my little circle of friends, the University, and BLO.
Dana, what is s/w? Sorry, I'm feeling particularly dense everytime I see you use the term :(
Betsy
ptrinkl108
04-13-04, 02:30 PM
Thanks for this interesting thread. Miriam wrote:
quote:
"When I talk to medical professionals from the USA and Canada, they always expect that I start to yell at them. ISNA did a wonderful thing for the Intersex community, but now is the time to change strategies. We can keep our position and see how the medics will change without us, or we can start to talk with them. In Europe this is already happening."
Yes, I agree that ISNA did a wonderful thing for the Intersex community. However, have you checked with Cheryl Chase about ISNA's position lately? I don't want to speak for ISNA, but I believe that if you check with them, you will find that the are now working closely with the medical profession, and following the European path of what I call the "Team Treatment" approach to intersex conditions.
I have a problem with the "Team Treatment" approach to childhood intersex surgery. In my case, it would have made little difference if there had been a "Team Treatment" approach to my surgery. For all I know there might have been something of a team working on my case, with all of them standing around the operating table. What stands out in my mind is that my surgery seems to have been "cosmetic" in nature as far as I can tell. I have never been able to discover any medical reason for my surgery beside the desire to make me look like other kids. The "normative" aspect of the surgery failed miserably, as I still have had to spend the rest of my life explaining my surgical scars.
So my position remains as I stated in an earlier thread, that childhood intersex surgery should only be performed in cases where doing surgery is an immediate medical need, and not dictated by cosmetic considerations. I know that studies have shown that intersex people in Thailand and India, who grew up without intersex surgery, often wish that they had had medical treatment. But as Betsy stated, they can still have surgery later, at an age when they can give consent to their medical treatment.
I think that the "Team Treatment" approach does not adequately address the issue of the "Patient Centered" approach to the treatment of intersex conditions, and that the "Patient Centered" approach should guide our efforts in reforming the treatment of intersex people. In the end, I believe that every effort should be made to preserve the intersex person's right to be involved in deciding what treatments are best for them.
Some intersex people will advocate the "Team Treatment" approach which has been labeled more European, and some intersex people will advocate the "Patient Centered" approach, which has been labeled more American and Canadian. (And I will add "English" in deference to Sophie338). Hopefully, both groups will be able to have discussions like this one about the issues. I know that Europeans often think of American and Canadian approaches to gay and intersex issues as being somewhat provincial, but I find American and Canadian approaches to be politically commendable. Here I am thinking of the positions that homosexuality is not a "lifestyle choice", and of the "patient centered" approach to intersex issues. In the future, I think that geographical distinctions might become more blurred. I am not against "Team Treatment" approaches to the needs of older children who have reached an age where their consent is sought in making treatment decisions.
Peter
Sophie338
04-13-04, 02:30 PM
Hi Miriam. :)
I wonder if it is a question of timing and consent. I get the feeling that the medical profession regards puberty as being coincidential with someone being able to make decisions about themselves.
Well I was Diagnosed with 5aRD, and I ident (sort of) as female. I think the virilisation I did endure was hell it wasnt complete but it was bad enough. you are right about that.
I just wished people would have asked how I felt and offered me options or alternatives before my teens.
I just get the feeling that the medical profession has this errouneus idea that children between the age of say 5 or 6 and their teens have no ability to think for themselves.
In fact being asked, or consulted at an earlier age would have helped a lot really.
What do you think ? :)
All the best
Many hugs
Sophie.
Dana Gold
04-13-04, 02:38 PM
quote:
"what is s/w?"
It is shorthand for: somewhat. When I (in the late 60's and the 70's) worked in hospitals (went to college for RN) as part of the nursing staff, we used shorthand notations in patient charts (daily log): like w/o = without; po = by mouth; npo = nothing by mouth etc. I still subconsciously use it in some instances:D
Dana Gold
04-13-04, 02:47 PM
quote:
"Some intersex people will advocate the "Team Treatment" approach which has been labeled more European, and some interxes people will advocate the "Patient Centered" approach, which has been labeled more American and Canadian.
East is East and West is West; and never the 'twain shall meet? myabe both sides should be talking with each other more. Both aspects of "Tx" have value:
The Team Tx should be Patient-Centered; and the Patient-Centered should be Team Approached.
Team w/o (;) ) Patient-Center would be useless and negative. Patient-Center w/o Team may be inadequate to fully address and comprehend the "wholeness" of child's needs and considerations by Tx approach in general.
OH!!, by the way (BTW...aha!! see: I had to figure that one out..)
Tx = med shorthand for treatment:D
:rolleyes:
Sophie338
04-13-04, 03:08 PM
Hi Peter :)
"Team Treatment" approach which has been labeled more European, and some intersex people will advocate the "Patient Centered" approach, which has been labeled more American and Canadian. (And I will add "English" in deference to Sophie338)."
Well I am not too up to speed on the "Team Treatment" approach. I know two clinics, Leeds and Middlesex (Both clinics are regarded well by the support groups in the UK) use a team approach. My experience of Middlesex is a positive one. When I had a difference of opinion with the endo. someone else in the team was there to help me make my point clear.
I now see my local endo on a regular basis and only use the middlesex when I feel there is a problem relevant to them specifically.
In the latter case I go to what is an endo clinic that is geared mainly towards Diabetes and Thyroid problems. So there is no specialisation around my condition there.
So while this is confined to England, I am seeing differnt approaches.
Having said that how the team treatment approach works in terms of IGM puzzles me a bit. In some ways I think there is still a bit too much willingness to cut without asking. but that is more to do with hospitals who have adopted the approach but not actually revised practices. Great Ormerod Street being one possible example.
To me "team approach" is just words. with only one example I can cite as if having any impact on my dealings with them.
When it comes to IGM, whatever the approach, I have issues with it. It is hard for me not to.
All the best :)
Sophie.
Dana Gold
04-13-04, 03:28 PM
I would think that to adequately provide a Patient-Centered approach; there would have to be much more involvment in the child's care than just: surgeons, who decide everything in one "procedure". A "team" in my mind, is all-inclusive of who is (or could/should be for holistic approach) involved: child, parents,doctors, counselors and is non-secretive, above all.
quote:
I just get the feeling that the medical profession has this errouneus idea that children between the age of say 5 or 6 and their teens have no ability to think for themselves.
"Children should be seen and not heard"
Where have we and how many times have we heard that before? :rolleyes:
Hello Peter,
However, have you checked with Cheryl Chase about ISNA's position lately?
It was September 11 2002 when I met Cheryl in San Francisco. I can’t tell you how glad I am that she’s back where she belongs. But to answer your question: indeed ISNA’s is also talking to the medical professionals and that means we are more or less on the same track. I mentioned ISNA to show how long a particular sound will linger: ISNA has changed but many medics still believe that ISNA is a club of people who don’t want to talk to them.
I have a problem with the "Team Treatment" approach to childhood intersex surgery. I my case, it would have made little difference if there had been a "Team Treatment" approach to my surgery. For all I know there might have been something of a team working on my case, with all of them standing around the operating table.
First ‘I[n] my case’ isn’t necessarily a good example of what is happening today and second a group of people isn’t necessarily a team. As I said before, we should not use our own experiences as a guideline for communication with today’s doctors. The teams I know are extremely cautious when it comes to the personal preferences of the individual team members. This means that the treatment is a mix of many opinions. That is a huge difference with what happened not so long ago: there was one person who told the other ‘team members’ what to do.
I know that intersex people in Thailand and India, who grew up without intersex surgery, often wish that they had had medical treatment. But as Betsy stated, they can still have surgery later, at an age when they can give consent to their medical treatment.
Ask Sophie. You are comparing your own experiences to those of others. Your experiences are not worse (or better) than Sophie’s or mine. It’s hard to admit, but we have to face it: any decision in the treatment of people with an intersex condition can be right or wrong, and we need a lot more information before we can say what the best treatment is. Treatment of people with an intersex condition is more than the decision to operate or not to operate. It is about the medicines you get, the psychological treatment, the sex you are assigned to, your gender, your relation with your parents, etc. etc...
I think that the "Team Treatment" approach does not adequately address the issue of the "Patient Centered" approach to the treatment of intersex conditions, and that the "Patient Centered" approach should guide our efforts in reforming the treatment of intersex people. In the end, I believe that every effort should be made to preserve the intersex person's right to be involved in deciding what treatments are best for them.
I think that this is a heavy ‘accusation’ that you should not use without more evidence than the words ‘I think’. Team treatment is not a substitute for a patient centered approach. But it is obvious that a patient centered approach is easier to guarantee when you have more than one medical professional who is responsible for the treatment. Working with teams is the best way to preserve our rights. I can’t see how a team would be a threat to the patient centered model (which definitely is not an US-only model). But feel free to explain this to me.
My remarks about American/Canadian versus European had nothing to do with the treatment itself. I was talking about how doctors react when they hear that I’m an intersex activist who wants to discuss the latest insights in the treatment of people with an intersex condition. The US medics think that I come to accuse then, the European medics know that I come for an open discussion. As a matter of fact, the best thing that can happen to me in such a discussion is that they forget that I’m an AIS’er.
Groeten, Miriam
ptrinkl108
04-13-04, 03:46 PM
Hi Dana,
I agree with you that a "Team Treatment" approach, which includes parents, doctors, counselors etc. is better than having doctors keep parents in the dark about what is happening with their child. In no way should my advocacy of "Patient Centered" approaches be seen as advocating a return to the old practices of shame and secrecy, which to this day haunt my life.
That said, I think that it is better to stress "Patient Centered" approaches to intersex treatment. I believe that it is entirely possible for parents, doctors, and counselors to act paternalistically as a team towards an intersex child in making irreversible surgical decisions that the intersex child later bitterly resents.
In talking about "Team Treatment" and "Patient Centered" approaches to intersex issues, I am raising these issues, in a way that I hope aids dialog about intersex issues. I think the terms are easy to understand, and have more analytical value than terms like "C1 and C4" which recently appeared on this forum.
I think that I am addressing real problems that do not have an easy solution. My ideas follow Lyotard's ideas of "differands", where as an example the European settlement of North America effectively precluded return of the land to Native Americans at a later time. Similarly, early childhood intersex surgery often precludes an intersex child's undoing earlier decisions.
Peter
Sophie338
04-13-04, 03:48 PM
Hi Dana :)
"Children should be seen and not heard!"
I heard that too often when I was a child too :)
All the best :)
Sophie.
I wonder if it is a question of timing and consent. I get the feeling that the medical profession regards puberty as being coincidential with someone being able to make decisions about themselves.
As far as I know puberty is nothing but a hormonal change. I haven’t experienced puberty in the way ‘normal’ people did because of my AIS. For the enzyme deficiencies like 5ARD and 17BHSD puberty is more important because at puberty your body starts to make excessive amounts of androgens. Even when you have an enzyme problem some of those hormones will be converted to other more potent androgens which will result in virilization. The same is true with PAIS: with puberty your body starts to make more androgens which will result in (some) virilization. I know that with the treatment of gender dysphoric children the treatment with hormones will start AFTER the first signs of puberty. I was told that it is important for those children to have experienced their ‘original’ puberty because that would be a last test to see if they really want to transition. So I guess puberty is an important milestone.
Well I was Diagnosed with 5aRD, and I ident (sort of) as female. I think the virilisation I did endure was hell it wasnt complete but it was bad enough. you are right about that. I just wished people would have asked how I felt and offered me options or alternatives before my teens.
I just get the feeling that the medical profession has this errouneus idea that children between the age of say 5 or 6 and their teens have no ability to think for themselves.
In fact being asked, or consulted at an earlier age would have helped a lot really.
I’m afraid it will not help you much, but in today’s treatment it is quite common to ask children with 5ARD how THEY feel about their condition. But there are also quite a few medics who think that all people with 5ARD’s will change to a male gender role, so it is necessary to have your voice heard. I don’t know how the treatment in the UK is, but in the Netherlands I see more and more that medics see the child as their client (in stead of the parents).
Groeten, Miriam
Maybe I am missing something, but I think the Team approach, when embracing a patient-centered protocol is the key.
Unfortunately, at least here in the US at some well-known children's hospitals, the team approach is used as a method of intimidation. It sets up a classic dependency relationship between parent and physician (or team of physicians).
In Pediatric Endocrinology (Humana Press, 2003) MacGillivray and Mazur state in the chapter about genital ambiguity that a team should be assembled, make the determination based upon medical evidence (reproductive capabilities if any, best surgical possibility) and then pretty much force the medical decision on the parents for the good of the child. All of this is to occur quickly as if there is a medical emergency surrounding the intersex genitals.
Parents (scared and frantic because they've haven't even heard about intersex conditions most likely) simply want an answer. If the answer involves surgery, then it is an easy decision. After all, all these smart people can't be wrong, can they?
As recent as 2001, email correspondance between myself and MacGillivray indicated that despite the team approach, it is her belief that it is in the child's 'best interest' to have surgical intervention done early.
A team should be used to give the parents information that they can easily understand and digest, and it should be reinforced as often as necessary that the genitals are not a life-threatening emergency---there's time. Lots of time, even in the situations Marian brings up. But if the team is rushing to judgement, the parents are simply following their lead. It's a bit like the hypothetical child I brought up earlier---if the parents are frantic the child will give the answers they want to hear because it is distressing to see those we admire or respect in angst.
Browsing forums where parents of intersex children seek support such as congenitaladrenalhyperplasia.org indicates that despite the overabundance of evidence indicating it's unwise, parents still rush their children with intersex genitals to surgery to get "fixed" They aren't coming to the conclusion that this is a good thing on their own, they are reacting to the notion that doctor knows best and that society won't accept their child because of an unseen "defect"
Feder in Doctor's Orders makes the case for caregiver dependency quite well (available here at Bodies www.bodieslikeours.org/Feder2002.pdf)
As much as we need to change the view the doctors hold about us, we also need to change society so that parents don't hold the notion that their child will be a social outcast because they have chromosomes or genitals that vary from standard male or female.
Betsy
Sophie338
04-13-04, 05:01 PM
Hi Miriam
I was thinking more about the way medics seem to insist that children are not able to make conscious decisions until thier teens. Puberty just seems to coincide with that, I wondered if there was any significance.
"I’m afraid it will not help you much, but in today’s treatment it is quite common to ask children with 5ARD how THEY feel about their condition. But there are also quite a few medics who think that all people with 5ARD’s will change to a male gender role, so it is necessary to have your voice heard."
On Mc Ginley I had best keep my counsel, it would be unintelligable, full of biochemistry jargon and the odd bits of libel.
:mad:
As you say this is personal experience. Then again it has a bearing on my thoughts.
You see it is this arbitrary thing that "all will be this" and "All shall develop that" I have been reading from some clinicians and researchers. It just somehow falls flat on its face when you are someone with a diagnosis of 5aRD but are born with a hypospadia. I suspect if test results consistently come back with a low DHT to Testo ratio, no matter how much testo is used in a given test. And then the textbook says something completely different. The basic descriptions of sex and phenotypes, yet alone gender have to be questioned. Admitted this is a personal observation. But probably valid. I just see too many flaws in many of ideas medics seem to discuss with each other.
"I don’t know how the treatment in the UK is, but in the Netherlands I see more and more that medics see the child as their client (in stead of the parents)."
I see no fault in that. It is after all the children who have to live with whatever happens. my childhood experiences of the UK system would be useless in terms of describing the current system because things have moved on.
It may be worth my reading up on what is in practice now for kids in the UK. I have been too wrapped up in my current issues to look it up really.
all the best
Hugs :)
Sophie.
Betsy wrote: As much as we need to change the view the doctors hold about us, we also need to change society so that parents don't hold the notion that their child will be a social outcast because they have chromosomes or genitals that vary from standard male or female.
I agree. When I speak with parents I sometimes feel they come from another planet. They want the best for their child and they really believe doctors can’t be wrong. But they should know that many xy-women I know, now have a rather ‘difficult’ relation with their parents. My mother didn’t tell me everything she knew and there are still a few things she can’t speak about. Probably she is afraid that I will disapprove her role in the treatment. That only proves that she still doesn’t understand how I feel about it.
I think you all understand by now that I 'work' mostly with xy-women with androgen deficiencies. In about 90 percent of these cases the genitalia are ‘normal’ female, so surgery is not the most important topic for our parents. But even without the topic of surgery I see many parents who are afraid for the future. Those parents heavily depend on what the doctors tell them. :(
Groeten, Miriam
Of course, as we debate theory, in the real world things are often much different:
http://www.heraldsun.news.com.au/common/story_page/0,5478,9273016%255E662,00.html
COURT backs sex change for girl, 13
Melbourne Herald Sun - Melbourne,Victoria,Australia ... It will have irreversible effects, including body and facial hair growth, muscular development, enlargement of the clitoris, and deepening of her voice. ...
<http://www.heraldsun.news.com.au/common/story_page/0,5478,9273016%255E662,00.html>
See all stories on this topic:
<http://news.google.com/news?ie=utf8&oe=utf8&persist=1&num=30&hl=en&client=google&newsclusterurl=http://www.heraldsun.news.com.au/common/story_page/0,5478,9273016%25255E662,00.html>
FULL judgment
Sydney Morning Herald - Sydney,New South Wales,Australia ... have certain irreversible effects such as deepening of Alex's voice, the promotion of facial and body hair, muscular development and enlargement of the clitoris ...
<http://www.smh.com.au/articles/2004/04/13/1081838711087.html>
Betsy
Of course, as we debate theory, in the real world things are often much different
In the Netherlands about 30 of those children are now treated by the medical center of the Vrije Universiteit. They use special medicines to delay puberty and start hormone treatment when they are 16 yo. At age 18 they can have surgery for the ‘finishing touch’. The difference between Australia and the Netherlands is that Dutch children can do this without the help of a lawyer.
Groeten, Miriam
Sorry, the article is in Dutch, but I guess you will understand the pics:
http://www.lkgtent.nl/show.php3?pag=http://www.lkgtent.nl/aktueel/uit-de-media/uitdemedia-20030913-01.html
Yes, the pictures do tell the story and thank-you for sharing. I can't help but wonder if in the Australian case if there isn't an intersex condition. I'll be researching for more information on it.
And like Miriam focuses mostly on androgen defiencies, I put most of my focus on CAH as that is what I have. In fact, when I speak I make the point that while I can discuss CAH and clitoral surgery to great length, I'm not as well versed in all causes of intersex and give resources to point people for expert information--that is, information from the people living with that condition.
This conversation today will come in quite handy tomorrow ironically. I'm doing a presentation (only one hour) for medical students at the Medical School of NJ in Newark and you can bet I'll be incorporating it somewhat.
Miriam's point about our own parents is insightful as well. How many here have broached the subject as adults and still hit a brick wall? I look to the conversation I had with my own mother a few years back (and previously, there was great strain in our relationship) as being pretty key to my devotion to seeing change occur. Hearing her insight and reflection on her own experience impacts me everyday. Last summer as she was dying, her telling me how she wishes she could be out here with me was very powerful for me. Sometimes parents won't listen to us because even though we are adults, we still someone's child in their eyes and how could we ever know what parents go through? They will however pay heed to other parents and I believe that she would have made a great activist.
All of us have a big job in front of us on many fronts. Yes...we need to change the protocol and see an end to cosmetic genital surgeries being done on infants, but I think we all have a responsibility (at least those of us on the front lines) to also change the way society views us. The mission statement of Bodies addresses this and I feel pretty strongly that once we raise our hands and say me too and tell our stories publicly, the cacaphony will become more difficult to ignore.
Betsy
Since Miriam took the risk and said something controversial, so will I.
Recently, I've started to re-think a position I had held in the past as a slogan: "No surgery on children unless it is medically necessary." I've argued that stigma of intersex should be addressed through education, support and social change rather than surgeries on the child, but I'm not so sure any longer. I mean, I still believe in creating education, support and social change so that these surgeries become unnecessary; however, I'm not sure any more if I agree with that statement as completely as I have in the past.
I started thinking about this while reading things written by people with other forms of physical variations and deformities that are treated with "normalizing" surgeries during childhood for cosmetic--and not medical or functional--reasons. In many of these condition groups, adults who went through these surgeries during childhood overwhelmingly approve of the surgery they received before they were old enough to consent: for the most part, people are happy to have received "normalizing" surgeries that protected them from ridicule, discrimination, and other social disasters. Yes, I want to help create a society where surgeries aren't necessary for them to be treated respectfully, but who am I to tell them that they are wrong to endorse surgeries?
So I think my position is slightly changing: basically, I am making room for the possibility that *some* normalizing surgeries on intersex children may be justified even if it doesn't improve function--as long as it doesn't harm function (which, clitoral surgeries definitely do), and it is overwhelmingly endorsed by adults who went through it as children. I would also say that at any point when a significant percentage--not 90%, or even 51%, but a noticeable percentage--of people who received that particular surgery in childhood begin criticizing it, that's when they should reconsider it. And they should make this determination condition by condition, surgical technique by technique. I'm not yet convinced that any of the surgeries currently being performed on intersex children meet this new criteria I am setting, but at least philosophically I can no longer say that I believe that all "normalizing" cosmetic surgeries are bad. I mean, they are bad, in the sense it shouldn't be needed in the first place, but sometimes people's need for survival has to override the more logically "correct" and morally "pure" principle.
<< But we should also understand that not every hypospadia is an intersex condition. >>
If you are talking about hypospadias that need to be operated for medical reason, I do not oppose surgery that improves the health or the function of the body and expected benefits outweigh risks. And I do understand that most doctors do not consider hypospadias as intersex.
<< But there are also many people who are happy with their treatment. When we ask doctors to stop surgery, we ask them to do nothing. >>
Despite what I wrote above, for the most part I do oppose surgeries that do not improve the health or the function of the body to be performed on a non-consenting child. But for me surgery is not even the main point anymore. I'm more interested in ensuring that parents receive all relevant information, that child and parents receive proper psychological care, that they are well supported by the community and allowed to live without shame, secrecy and isolation. The ideal vision I have for our movement is that we (as in activists, medical professionals, health administrators, educators, etc.) all work together to end shame, secrecy and isolation through creating resources and social changes--and eventually one day surgery will just stop, at least as a standard practice, as the byproduct of these changes. In short I don't support "do nothing" as the solution: I want surgeries replaced with non-surgical alternatives, that are: information, support, education, networks, empowerment, and social change. Yes, I still oppose surgeries--but I also feel that focusing on that one issue creates division among ourselves and between us and medical professionals. I feel that creating alternative resources to stop shame, secrecy and isolation is the way to go.
I hope I didn't disappoint Sophie...
<< Don't say that to people with 5ARD, 17BHSD or PAIS. When you don't remove the testes they will virilize at puberty. That's great if you identify male but it really sucks if you identify female. >>
Perhaps they are too young to give the actual full informed consent in the legal sense, but they can be involved in their own treatment in a meaningful and respectful way by the time the child is about to hit puberty, provided the child is raised with honesty and acceptance instead of shame, secrecy and isolation. Plus, they could hormonally delay puberty in order to buy some time to allow the child to more fully participate in her or his treatment. You know all that.
I don't think American activists are saying that the child has to be legal adults before surgeries can happen; I think it's perfectly reasonable to consider gonadectomy in these cases at ages 10-16, depending on the particular child's psychological development. For that, I would argue: 1) don't do surgery before the child can participate in the discussion; 2) be always open and not secretive or shaming of this condition, because the child shouldn't be told about this out of the blue at puberty and then forced to make a quick decision. It should be part of the ongoing conversation throughout the child's development (and there should be self-help books and support groups for the parents so they can learn how to do that).
<< When I talk to medical professionals from the USA and Canada, they always expect that I start to yell at them >>
Isn't it mostly doctors from Canada? I say this because I don't think it's Cheryl who caused this; it's another early activist with ISNA. Cheryl can come across as intimidating, but not toward doctors: I was genuinely impressed at how calm and mellow she can act in front of an important doctor. I can't name names here, so email if you want to hear more.
######
ptrinkl108 wrote:
<< I know that studies have shown that intersex people in Thailand and India, who grew up without intersex surgery, often wish that they had had medical treatment. >>
That's what Garry Warne says, but he hasn't published the study and from what I gathered the data isn't in the presentable format. I suspect that these respondents had unrealistic expectation about what surgery would do, and Warne probably didn't tell them that many people who did have surgery as children are unhappy about it. Besides, surgery versus nothing is the wrong way to frame this debate: it should be surgery versus non-surgical interventions that address social and psychological problems that surgery is supposed to address.
This is a major step for the intersex movement. We all have changed our positions a bit and this will make it easier to change the things we all REALLY want to change. I want to thank all the contributors to this thread for their fair and open responses to ideas that seemed to be controversial.
It’s bedtime here, so ‘slaap lekker allemaal!’ See you tomorrow!
(sleep well everybody!)
Groeten, Miriam
Sophie338
04-13-04, 08:29 PM
Hi Emi :)
"Yes, I still oppose surgeries--but I also feel that focusing on that one issue creates division among ourselves and between us and medical professionals. I feel that creating alternative resources to stop shame, secrecy and isolation is the way to go.
I hope I didn't disappoint Sophie..."
No You didnt dissapoint me :)
Actually I suspect I may have been thinking over this myself a little. Something has changed, even in my angry mind. :)
I think with my responces so far on this thread, I have been drawing from my own expereinces and not the broader picture.
You Said.
"I started thinking about this while reading things written by people with other forms of physical variations and deformities that are treated with "normalizing" surgeries during childhood for cosmetic--and not medical or functional--reasons. In many of these condition groups, adults who went through these surgeries during childhood overwhelmingly approve of the surgery they received before they were old enough to consent: for the most part, people are happy to have received "normalizing" surgeries that protected them from ridicule, discrimination, and other social disasters."
With me this is probably a very relevant point, My experiences were really bad, and as a result I personally find it very hard to endorse or support surgery, Particularly Hypospadias repair. But because I ended up in a mess does not mean everyone who undergoes the same procedure would have the same outcome. Not only that with me there were underlying problems which they could not realistically have diagnosed at the time. The continuing shame and stigma was a real big problem that made matters worse. I think there is a lot to what you are saying. About resources to stop the same and secrecy.
I sometimes wonder wether for us specifically it is an issue of consent and timing, which may be unique to us. I do find it very hard to feel anything positive about surgery that is carried out on children so young. In a way that somehow re-enforces the shame and stigma. The way things currentley seem to work is that The surgery can be "forgotten" at sutch an young age. if however anything goes wrong as time passes, it is not just a health problem but the return of the shameful secret in the eyes of society. Perhaps if there were more openness and no shame it would make life a lot easier. Like when I was 5 it would have been my kidneys and baldder people firts thought about when things went badly wrong.
I learned a long time ago that I am not truly in a position to offer
an opinion when I realise that the experiences of others are often so different from my own. And yes a lot of the time what people have heard is my pain rather anything helpful.
I admit that I am probably speaking from a position of being in pain about it rather than having a clear judgment about it philospohically.
To me gender is a social thing and is very varied (I dont fully understand it if I am honest). But as a biologist, I tend to find that biology is not so dimorphic either. Biologically speaking it is quite miracle if you like that we have two sexes. I mean I dont know what people base thier assumptions about "normality" on. This "normality" that results in school bullying. It sometimes feels as if we as human beings are pre-programmed to be wary of difference and at the same time we are all different. It is really perplexing to me. where is the balance between the individual's sense of integrity and the collective sense of certainty.
I think engaging medics in discussion is a good move. We at the AISSG have done this for quite a while. And it does have positive results because they do take on board what we say. As adults, affected by the issues we are discussing. Not just the surgery but everything.
While I do find surgery too painful a subject for me personally. I do feel that discussion between us and medics is a positive thing. As for ideas, at this point I just dont have any. The only ideas I can offer would either be as a biologist, or as an intersexed individual with my own specific expereinces, which are by no means universal.
You Said:
"Yes, I want to help create a society where surgeries aren't necessary for them to be treated respectfully, but who am I to tell them that they are wrong to endorse surgeries?"
I dont think there is anything wrong with trying to create such a society. and I think you have done a brilliant job in the work you have done. Were it not for people such as yourself, there would be no discussion out there, this would all still be very secret.
So I believe you have made a lot of progress, certainly a lot more than I have.
I think there is clearly a difference between trying to create something positive and being heavy handed. And I often have my doubts about myself. If it helps it is a borderline I feel I may have crossed myself very often. I have been very heavy handed with medics.
I am suspect it really is a question of finding a balance.
I am really going to have to think about this myself as well :)
All the best :)
Hugs
Sophie.
Dana Gold
04-13-04, 08:38 PM
This has got to be one of the longest, most viewed (over 2000!!) and replied threads I have ever seen on BLO. What a turnout!!
Dana
The stats are misleading...when the thread was split off it incorporated the stats from the thread it came from. It's a small bug in the software.
Betsy
claraJane
04-14-04, 02:49 PM
Betsy,
Do you ever feel like you want to run and hide when you read a thread like this? (Sorry to come in late, BTW) I sure do. :(
Until IS children have some influence over their treatment, those who treat them will contribute to their problems. I don't care what you call it. To me a team is only more people to have to get by to get what I want. And patient centered only means that I'm surrounded with no way out. And I'm not allowed to use the words I need to describe what I feel about HBGIDA.
Shall I speak the ultimate blasphemy here? Had I been taken to Johns Hopkins rather than Chicago, John Money would at least have asked me, in private, point-blank "Do you want to be a boy or a girl?"
How difficult is this? Unless there's a real medical issue keep them all away from the kid. Let the parents go to the doctors and get treated if they won't let the kid change their sex of rearing. If you explain their options I believe that most kids are capable of understanding and choosing what should be done regarding hormones and surgery as well. Ideally, the parents, child and a physician can talk about it in a way that doesn't pressure the child or the parents.
Kind regards,
cjs
just me
04-14-04, 03:14 PM
Hi everyone, this is my first post here - or anywhere in this group for that matter :), and I'm not really sure if this is the appropriate place for it butttt, seeing as how this has to do with surgical intervention versus non.... Here goes:
As a child in the Midwestern US in the fifties - a childhood all but forgotten until a few years back, I was extremely small and petit for a "boy". (There were some standout memories, but most were repressed.) Literally everyone was bigger than me. That is, the boy most seen (everyone knew as a boy) at school. At home I was kept in diapers (nappies) and dresses, but was sent to school in boys clothes. A short haircut maintained the appearence - but diapers were worn under the pants. Every day was a battle, either fights with my brothers (two older) for being my moms "pet" and a baby, or with every other boy for being the chosen one to prove their growing masculinity on. The diapers were due to an incontenence problem, which has never really stopped. In School, I identified with the girls. Knew all of the jump rope songs, played with them, was accepted by them, and felt a part. With the boys, they never selected me for their teams, loved to try and beat me up, and was harrassed at every chance. I was very tough however, and it generally took two or three to really get me.
I never knew what the problem was. No one ever told me. No one ever explained anything to me. All I knew was that I didn't "look" like the other boys in front. When at the locker room of the only public pool, I hid from them to change, and could not understand why I was a boy - when in my bathing suit I "looked like" a girl did. Not knowing what a girl looked like (physically), all I had to go on was that they were as "smooth" in front as me. I wore dresses at home, and felt more comfortable in them, than pants. Why then, was I a "boy"? Was even told on more than one occassion when being changed, that I should have been a "girl". What was a girl? What was so different about them?
Then, at puberty, my breasts began to develop. I heard my mom talking to the Dr. out in the hall when they didn't think I could hear them. After that, there were lots of shots for being "anemic". I grew to my full adult height in one summer, and my voice dropped from a clear soprano, to bass. My testi's became more than mere pebbles, and my penis grew. I became - for the first time, a "boy" in appearence, but with nothing to brag about. My teen years were spent in an alchohol daze, and I drank even harder all the way through the Army time. Still spent hiding from all the other "guys", lighter in weight than all of the others, but with some chest hair that they didn't have.
Did not start to find answers until in my forties, when a Dr. was consulted for the "hot flashes" being experienced. He looked for a brain tumor, but found an ovary. Said that my symptoms were nothing more than menopause. Did not have any suggestions as to what to do, other than wait them out. My "male" adopted self was thrown into the trash. Here I was looking male, virile as male, but with menopause? An ovary? Memories.... Shadows which could not have been real, became monsters springing from every corner of my mind.
There were no medical records to be found. The hospital born at had been torn down forty years before. The Dr., deceased. No childhood medical records either. My mom, uncooperative. By brothers infuriated at my questions. Then, my mom sent me home with some pictures, hidden inside of others. Me as a very young child - in a girls bathing suit. Wearing a skirt, blouse and sweater shawl standing behind my grandfather as he smiled for the camera. A man who would have never tolerated a "boy" dressed like that. I was about nine at the time. Others of like confusion. Short hair. Wrong age for diapers. Wrong haircut for dresses. The rage I constantly felt at everyone and for everything became clear, and understandable. My mom has sinse died, along with my dad. We had - in the last year of her life, become closer than ever before. Even though she never admitted anything, she began to treat me as a daughter while calling me, son.
They apparently did not do surgery on me at birth, I wish they had. At age eleven or so I cannot remember yet. The "shots" given for supposed anemia? Wish they would have asked. Would have told them to let my breasts grow, they felt wonderful. Loved my soprano voice. Was clear as a bell.
My matrix is xxxy(?).. Diagnosed as GD, MPD, CD. I like women not men, but all (women) seem to say they have never met a man like me before. They can just "talk" to me, and nof feel threatened in any way. Guess the pheramones are not the right type.
Sooo, for me, surgery at infancy would have been better. No one talked to me about anything anyways, and as a child I "felt" female.... Even if I didn't know what being female was.
Sorry this was so long, but it has been short if my whle history would have been included. Thanks for taking the effort to get through it.
Sophie338
04-14-04, 03:22 PM
Hi ClaraJane
"To me a team is only more people to have to get by to get what I want. And patient centered only means that I'm surrounded with no way out. And I'm not allowed to use the words I need to describe what I feel about HBGIDA."
As I have said I am pretty behind the times when it comes to concepts like "Team" and "Patient Centered" (I had to get a friend of mine to explain it).
I think the HBIGDA are just weird and after reading a posting from Betsy about someone just seeking vaginoplasty after being born and raised female, and then having to endure the HBSOC. I think the HBIGDA or the people who implemented the HBSOC in that case are barking mad. Well I dont think highly of the HBSOC in any case.
"How difficult is this? Unless there's a real medical issue keep them all away from the kid. Let the parents go to the doctors and get treated if they won't let the kid change their sex of rearing."
Again Emi what came up with makes sense to me, the thing about setting up resources to prevent secrecy and shame. On further reflection I suspect that this would prevent all that, as well as non consented surgery. If secrecy and shame are removed, then "sociomedical emegency" is an obsolete term, meaning policies built around that concept are obselete.
Actually I think that was a well cool idea :)
All the best
Hugs
Sophie.
Dana Gold
04-14-04, 03:43 PM
Earlier in this thread it was noted that in the US and Canada,the classification of intersex conditions was/has been narrower; i.e. Klinefelters not a "real" intersexed condition as also CAH. Since I am from Germany; I have been doing some research on how things are done there. Their view towards intersex is much broader and much less exclusive. I translated the types under the German. From just some of my reading of the site (link...as well as some of other stuff in german), the approach has become radically different than here in the US; holistically and with multi-disciplinary medical staff; an intersex condition is seen and handled as a multi-factored issue and not just a simple medical diagnosis. I think that is what Miriam was trying to convey to us here in the US.
Im Rahmen der Krankenhausdiagnosestatistik des Statistischen Bundesamtes werden Angaben zur Intersexualität noch nicht erfasst. Das Statistische Bundesamt wird voraussichtlich ab 2002 die Krankenhausdiagnosestatistik auf der Grundlage der Internationalen Klassifikation der Krankheiten ICD 10 führen. Dem Begriff "Intersexualität" können dann nach der ICD 10 folgende Diagnosen zugeordnet werden:
E 25 = Adrenogenitale Störungen
E 34.5 = Androgenresistenz-Syndrom
E 28 = Ovarielle Dysfunktion
E 29 = Testikuläre Dysfunktion
Q 96 = Turner Syndrom
Q 97 = Anomalien der Genosomen bei weiblichem Phänotyp
Q 98 = Anomalien der Genosomen bei männlichem Phänotyp
E25= adrenal disturbances
34.5= androgen resistance syndrome
28 = ovarian dysfunction
29 = testicular dysfunction
96 = Turner's
97 = genetic anomalies with female phenotype
98 = genetic anomalies with male phenotype
http://www.dgti.org/is-spez.htm
Frau Gold
Dana Gold
04-14-04, 03:55 PM
Dear just me,
Welcome to our forum and support group; I'm sorry to have interjected my post (german stuff) in between your introduction. Anyway, take care.
Dana:)
Dana was apparently quoting something like this:
http://www.eicd.com/ICD10/Default.htm
Welcome, 'just me'!
Glenn
Dana Gold
04-14-04, 05:08 PM
I wasn't touting the classification system (ICD-10)....but rather the fact that diagnoses such as Klinefelters and CAH (as what some would say is not IS) would not get "tossed out of the window" of available resources for PROPER and holistic Tx of intersexed children (as in osteoporosis and other manifestations of the particular condition that may cause ill health) and/or young adults using the inclusive categories that were listed......meaning marginally, as well as more "significantly intersexed" conditions would be considered for these resources. that should be fair, rather than excluding CAH and or KS as opposed to: sorry,; you are not intersexed enough to be part of consideration for our "program" (even if patient/team centered) ..... AND Europe seems to be heading toward a more than just a "surgical" fix-it attitude towrd intersex conditions.....
Hi Dana,
IMHO the situation for people with intersex conditions isn't any better in Germany than in the US. It's improving, yes, there has even been a hearing in parliament, but it's still the meds and psychs who "know best what's good for you".
I can mail you my german link-collection (another day, I'm sooo tired now).
Sofie
Dana Gold
04-14-04, 05:27 PM
quote:
"a hearing in parliament"
a hearing in Congress? I doubt it:(
The TVC and other"freaks" would have a conniption fit:eek:
oh well....I'm just a cynic:rolleyes:
Dana
<< Earlier in this thread it was noted that in the US and Canada,the classification of intersex conditions was/has been narrower; i.e. Klinefelters not a "real" intersexed condition as also CAH. >>
Klinefelter's and CAH are at two different levels. When they say that Klinefelter's is not intersex, they are defining intersex as an endocrine disorder. When they say that CAH is not intersex, they are basically saying that "intersex" is equivalent of "true hermaphroditism." Many doctors agree with the former definition, and disagree with the latter.
Regardless of any condition the child has, you will find parents who insist that it's not intersex. That's partly because calling their child "intersex" feels like s/he's not really a boy or a girl, and they are afraid of the child growing up to be queer or genderqueer. Doctors also do not diagnose anyone as "intersex," because it's not a diagnostic category; children are always diagnosed with the specific condition, not the category of "intersex."
These things combined, there are always arguments over what's intersex and what's not, and there aren't any fixed definition anywhere. I don't think it's getting narrower: it's just that there are many incompatible definitions, and parents prefer definitions that make their child "normal." Doctors' perspectives, on the other hand, depend largely on their specialty: for endocrinologists, intersex is an endocrine disorder; for geneticists, it's chromosomes and genes; for urologists, it's ambiguous genitalia; and so on.
As an activist, I tend to think of intersex not in terms of its etiology, but in terms of how doctors treat us (or they would have treated us without our activism). That's why I said that I will consider transsexuality to be intersex if they start performing brain surgeries to "correct" gender identity disorder in infancy without the child's consent. But definitions is not what matters to me: I'm interested in addressing the issues, and not in coming up with the best definition.
Dana Gold
04-14-04, 05:35 PM
quote:
"it's just that there are many incompatible definitions,"
Yes, Emi, you are so right about that.
"intersex not in terms of its etiology, but in terms of how doctors treat us"
Yes, "proper" Tx is more important than why or "normalization"
Dana
<< a hearing in Congress? I doubt it >>
I don't expect anything would come out of the federal or state governments for a while, but watch out for county governments: as you've seen in the recent battle over the same-sex marriages, it's counties that are close to the people and can spearhead progressive public initiatives. Expect to see some exciting developments in at least four counties across the Western U.S. over the next year or so.
Dana Gold
04-14-04, 05:44 PM
excuse me Sofie, what does IMHO mean?
:)
As for Germany (and Europe); what the heck do I know about it, really. I know in Germany doctors have a very high social rank; so you're right....about the same as here in US.:(
just me
04-14-04, 05:46 PM
Dana and Glenn, thank you for the welcome.... Just re-read my post and it was confusing even to me.. Guess there was a little too much emotion while writing it. My real (full first) name is Chris. Guess they (parents) couldn't go the rest of the way, which would have been a pointer.
what does IMHO mean?
In My Humble Opinion :)
I'll need to get caught up on all the new stuff, but wanted to welcome JM to Bodies.
He looked for a brain tumor, but found an ovary.
I hope that they weren't poking and prodding in the same place when that discovery was made ;) Sorry, it's been a long day...
Betsy
(I'm going to try and make sense and hopefully will succeed but if not, I plead the fact that I'm really tired---two presentations about IS in one day: one to 1st and 2nd year med students and one at the CNUY graduate center in NYC...that's another thread though so bear with me)
While I have very strong feelings about docs who swoop in with answers and alleged 'fixes' for children with intersex conditions early on, we can't always solely blame them as the antagonists. Very often, they are reacting to the parents. That is why it is so important that we continue to make the point it is not the parents who are the patients, it is the child. But, we can work on convincing the doctors of that all we want but unless we start educating the parents as well, things are not going to change. As Emi put it so well, it's not the condition, it's the shame and secrecy surrounding IS (sorry Emi---it's easier to type :p ) that needs to be eliminated.
When I was in Sweden last year, they had a well-known endo there and he told me quite empathetically that the parents are demanding a fix most often. And doctors being doctors (particularly surgeons), they see a child that they think they can 'fix' and make mommy and daddy happy---so they take the easy way out and use a scalpel. Suggesting counseling and peer support is a much more difficult solution (but way better in the long run) because results are not immediately obvious. It's a problem of western society as a whole---"Mental health care must mean I'm crazy right? But there's nothing crazy about about going to see a surgeon so that is the route I will go"
This is also why I feel the language in the Time article was so horrible and damaging. Parent's want a boy or a girl, they don't want no stinking intersexual.
However, we as advocates can change that deficiency by being proactive in the media and by being out about our queer bodies. Change happens slowly and it usually doesn't happen on it's own. Activism is really important here and being out there raising our hands and saying me too is huge. Think about how gays and lesbians have gained power and acceptance. That didn't happen overnight, and it's not done happening. But it didn't happen as some type of osmotic phenomena either.
ISNA is doing a great job inside the hospitals changing attitudes there, but those of us living with an IS condition and acting up as activists will be the ones to change society. One won't change without the other.
Betsy
just me
04-16-04, 10:22 AM
Hi Betsy
:D "Poking and prodding in the same place"... Not at the same time anyways, but never did figure out why he sent me to a proctologist instead of a neurologist for the brain tumor...
To be fair to the medic, he very well may have referred me to the proper channels for follow ups.. After the "news", my emotions went out of control and I ended up in a hospital under suicide watch..
Dana Gold
04-19-04, 03:11 PM
Hi,
Your visit to the procto may have been to assess the possibility of colo-rectal cancer, since brain tumors may be metastatic (secondary due to "spread" from the primary tumor). The colon and or rectum may have been the site for primary tumor involvement and thus the procto was the specialist to be referred to. I am only guessing:but; most doctors are woefully ignorant (mine) of various IS conditions and any co-existing issues and may have attributed your hot/flush/menopausal symptoms to emotional/psychosomatic aspects of a brain tumor. I have been through the "hormone wars" and I was sweat-soaked and anxiety/hysteria-ridden from some of my hot flushes. Male hormone shots in puberty made a nervous wreck (spontaneous anger, chest pains ) of me. As an adult , my psych initially attributed these to a "mood disorder" until an endo found out/ confirmed my testicular failure diagnosis and thus my "symptoms" were due to a hormonal decline and fluctuation. Anyway, sadly, they never really tell you that much, and a lot of figuring out is left to the "patient"....that's one reason why I got to be a Science Nerd. "They" can't fool me anymore .
Dana
just me
04-21-04, 11:42 AM
Thanks Dana, your explanation fills in some blanks for me.
Science nerd? Couldn't get enough of it myself either. Had to try and find out why my brain was so different than the other "guys". Ended up with a double major and double minor as a result. Knew it had to be due to some of the "hard wiring" as much as the psych stuff. through years and years of research (intellectual) I think I finally have come up with the answer. With the brain, it's emotion which drives the initial physical hard wiring, and then the physical which drives the emotions. A never ending circle that begins in infancy with strictly emotion (senses and sensations) before thought can occur. Too simple an explanation, but it will suffice for now but allows you to get the gist of it.
Dana Gold
04-22-04, 07:51 PM
Under the thread: I am Bi AIS etc... I posted a reply entitled " oxymoronism of genito-centricity" which has some relevancy to the topic of Intersex-GID discussed here:
http://www.bodieslikeours.org/forums/showthread.php?s=&threadid=757&perpage=9&pagenumber=3
Dana
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