invasion of the intersexed?

[sparklingdreams]

The D.S.D. Guidelines are making their way into the medical community through various streams. The most obvious two are of course, like first, from us going out and putting it in front of them and then like secondly, is them asking, or looking, for new guidelines. But they're also getting into the offices of the many Doctors who treat us because many Doctors do desire a standard model of care and with the D.S.D. guidelines they have it.

The D.S.D. guidelines has been written with input from caring medical professionals at every turn, which is another thing that helps with getting the D.S.D. guidelines into Doctors hands. One other simple thing that is getting these guidelines into Doctors hands is the Parents' Guidelines. These guidelines are written with input and contributions from many parents who have been through various periods of raising children with one of the D.S.D.. Some made their contributions because of their success others because the realized their mistakes, and both wish to help children & parents faced with these conditions. Doctors who actually wish to help their patients and their parents end up finding the DSD guidelines and now the benefits are two fold. Of course this scenario can work out the other way too.

These are two other very effective ways of getting these guideline passed on. The last is prolly the most effective. Its pear support, which the DSD guideline do have. Indeed the very wording "Disorders of Sex Development" was coined by Doctors. So the medical establishment's overall more open mind set toward a new treatment model. Sadly this is mostly because they are being confronted by the problems with the old model.

These are just the initial ways that the DSD guidelines have made their ways into Doctors hands. Though I'm sure that we'll find many other wys to continue to further spread the treatment guidelines. And Dana, thank you for being open to changing how you feel, that's awesome. I guess since I've always just seen my CAH as nothing more than a disease and my GD is another disease I have and its a neuro-muscular disease, or movement disorder, so think of my CAH as just being one of these disorders hasn't bothered me. I had to work through my personal stigma of that word long ago. I just think its cool to have someone else here who has worked through their emotional issues about words used in the DSD name when I'm sure that anyone who opens themselves to the DSD guidelines would see how much better they could make the future for anyone living with any of the DSD.any body has question every body can feel free to ask me an I'll reply as soon and as best as I can. Thanks again. *Hugs*

[RGMCjim]

I was born with ambiguous genitals in 1957. I had no testicles, something in between a penis and a clit, no vaginal opening (fused labia). My parents wouldn't subject me to exploritory surgery in toddlerhood to see what was inside my body, and didn't feel it mattered. (Back then surgery could not be done on infants because there were no anesthesias safe for them)

The doctor told my parents to dress me in yellow and green, call me by a nick name and wait to see if I seemed more like a boy or a girl in order to know how to raise me. I seemed more like a boy, was seen as one, and called myself one so that's how I grew up. I thought I was a partially developed male. My father was great. My mother thought I was a freak and that the world was going to blame her for it. She needed counceling, which parents of children with unexpected birth outcomes get today, but which she didn't get then. She was abusive, it waxed and waned but finally ended with her rejection of me.

I didn't start puberty and ended up needing testosterone hrt which I've been on since my teens. My Dad saw to my medical needs in as much as he could without my Mother getting in the way.

I have had penetrative sex with women and was married for a while despite being gay. I thought that I could win my mother's love if I could just be heterosexual. That didn't work of course. For her, any sexual was just more freakish to her. I'm partnered, have a wonderful relationship with my 19yr. old adopted son and a step daughter by a previous partnership. My sex life has been varied and vibrant. Having an exotic body has NOT been detrimental to finding sex and love. I'm active in an Episcopal Church, a gay men's chorus and a group of Bears. I'm well known in the local gay community and have even been a member of naturist (nudist) men's groups.

At 44 I had my first real medical workup for being intersexed. I learned that I'm actually XX, have a small uterus and ovaries that don't and couldn't work, and a closed over vagina that was opened for me. I also learned that in addition to progestin exposure in utero I have CAH. Finally learning this helped other family members who found out that some of their health problems were related to them having CAH too.

Figuring out I am intersexed was one of the most important and freeing things that has ever happened to me. No longer was I a "poor excuse for a male", "a less-than man", a "partially developed man". I am something. I'm intersexed. Living in my body, having sex with my body is NOT the same experience that either males or females have. I have a vagina and a penis. I don't have testicles, ejaculate, menstruate, or have a vagina that lubes. I'm a man, but not male. If I'd lived as a woman I would not have had many of the experiences that are typically female and it would have been a constant battle to keep my body from developing male secondary sex characteristics. Those are not experiences that ordinary women have. Being able to say that I'm an intersexed man meant that I could finally own and own up to my own particular life experiences and it allowed others to get closer to me and understand me better.

I am not in suport of calling us disordered. Things that are disordered need to be ordered. DSD is a diagnostic term, not some benign label. By allowing ourselves to be pathologized in this way we leave ourselves open for future enforcement of mutilating surgeries, and forced gender assingments. We will forfit our claim to live in our own bodies, self-determination, and the right to discern our own genders because refusing "medical treatment" for a disorder is itself a sickness. Any parent refusing genital surgery, or enforced gender assignment on their child could be called criminal. There are serious legal implications to accepting pathologization. There is an intersexed organization and several Gender organizations researching our legal and civil needs.

Intersex is a neutral term, it just means "inbetween sex". It was/is used to describe any condition that made someone's body not quite male or female, or in some way a little of both in any way. It makes no diagnosis, ascribes no disease or malformation, implies no need for intervention, carries no stigma. The word, Disorder does all those things.
If I say I have an intersex condition, it is just a qualifier for male/man or female/woman. If I say I have a Disorder of Sexual Differentiation it most certainly and unequivically states that I am not like other males/men or females/women. It says we have a problem that must be dealt with before we can be considered full-fledged men or women. I am opposed to that.

I do a bit of educating on intersex issues and I have found that every year people are more educated and aware that male and female overlap in nature. They know that we all start out as female and that it takes more than genetics to get male and female to differentiate. They know that everyone has the capacity to develop as the opposite sex, and that sexual differentiation is complex. They know that some animals change sex due to population pressure, that snails and slugs are true hermaphrodites. They aren't really surprised to learn that some people have a mix of male and female sex characteristics. They are always shocked to learn about how we've been treated in the past.

I am very optimistic for the future of intersexed people. I believe that if we continue to educate the public and to choose our physicians with care we will see more attention paid to our health concerns and to helping us figure out our own genders and our genitals. I firmly believe we don't need the medical profession, or the politcal forces of society to tell us what we "SHOULD" be or have.

Respectfully,
Jim

[sparklingdreams]

I no longer feel the need to discuss this with those who can't even open their minds to see past their fear over being called disordered. God forbid our diseases be seen for what they are, horrible diseases, and nothing more. We have them yes, but I won't be defined by my diseases. For you here who want so badly to be defined by our diseases so be it. I really don't have the energy to discuss this with the few who wish to stay marginalized and mutated. Jim your statements really have no connection to the guidelines associated with the actual DSD. That is why I will no longer be discussing this, nor visiting BLO. No one here ever even bothers to actually read the DSD guidelines before just dismissing them, or worse, simply out of a stigma of the word 'disabled'. I have other diseases, other disorders, maybe that's why I can actually read the guidelines before making completely illogical statements & arguments against them. I'll continue to do my one work with the DSD and with changing the medical paradigm. But my becoming disabled and then turning to the internet and this supposed 'community' as showed me that, for whatever reason, there is no community that I am a welcome member of where I can also help change the medical establishment. But I'm just not a girl who wastes to much energy, and I've already wasted to much with the supposed 'Intersex community'. Which has turned out to just as much of a misnomer as it first seemed, to me, to be.

[RGMCjim]

Dana,
There really never were any guidelines for establishing intersex conditions because it really wasn't/isn't a diagnostic term. It was a blanket description for people who by whatever cause had some physical feature or features that made them not exactly male or female, or kinda both. So a person who is XXY might only have no internal or external intersex feature other than his karyotype and is still called "intersexed." I met a man like this. Or, a person with XXY might start life phenotypically male and yet gradually femminize over his life time, steadily becoming more androgen resistant and slowly feel like he is more female than male. I know a man like that too. These are just examples. The point is, our dianoses were Klinefelter's syndrome, or CAH, or genetic mosaisism, NOT intersex. Intersex is a neutral describer that caught on more with intersexed people than the medical profession. The beginning of a social identity for people with intersex conditions is still very new.
I believe intersex, as a term, was introduced to the medical profession by John Money. I know the first time I heard it associated with myself was in 1972 or 73 when I was sent to Buffalo Chirldren's Hosp. austensibly for hormone therapy to start puberty. The term didn't didn't really catch on outside the "gender clinic" circles. Many, many intersexed people online have stated that whenever they tell a Doctor they are intersexed, (my experience too), they aren't sure what we mean and we have to explain it. Often they have no clue what our diagnoses mean either and have to look it up. This is why being "out" as intersexed is so important to us recieving quality health care. The secrecy, shame and lies things has kept our doctors in the dark as to our possible health care needs. That's been changing since we've become more vocal and visible - not as a result of it being perveyed by the Medical profession itself. Really, the term intersex was claimed by us with the original work done by intersexed activists that formed ISNA.
A great deal of the medical professions treatment of us had nothing to do with our health care needs. It had to do with managing the "social emergancy" that was percieved if a baby had ambiguous genitals and/or mixed organs. The focus was on covering up our genital ambiguity and seeing to it that we didn't have fertility that didn't match our gender of rearing. This was done without serious concern for sensativity, function, continence, or emotional trauma. It also had a lot to do with sensationalism over the idea that a person's gender and sex could be assigned rather than it is something that emerges.
Where does all this leave us? Well, I need a damned word for what I am. I spent the first 40 years of life without one. I was a "partially formed male", or a "pseudo-hermaphrodite", all apologies for not being male enough or female enough. That's what the term "intersex" gave me - a legit sex! I could finally say, I'm an intersexed man. I didn't have to say, "I'm a man but..." It gave me a people. I wasn't all alone anymore. There were other intersexed people. It gave me something else of supreme imortance. It gave me a way to talk about myself and people like me to other people. I could tell our stories, our struggles, our persecution and make allies for change in the way we're treated in society and by the medical profession today. It did the same for others, like Betsy Driver who designed this site and has accomplished wonderful things for OUR PEOPLE. How's that feel? OUR PEOPLE. There really is an OUR PEOPLE with organizations of intersexed people with every kind and degree of intersex condition all over the world all beginning to connect and do good work for ourselves.
Next week David Cameron is covering the concerns of the intersexed at a Health Summit in Philadelphia. Last fall he did one in San Francisco. I'm giving a college lecture next week, and 2 weeks ago covered intersex issues for a speakers bureau so that they can add the topic to a list of sensativity training issues they educate people on from the police to school teachers, to industry.
We have so much to feel good about. But so much work to do. There is a new organization (I'll post the website -gotta look it up) that is concentrating on the legal problems of the intersexed. Our legal issues are getting worse every year, especially in the U.S.

Jim

[Dana Gold]

I suppose it was never the intention of either term (intersex or DSD) to create the divisions (quite evident in this thread) between people who were born and/or developed physical conditions (primary and/or secondary sex characteristics) that conflicted with the norm of ideal female or male; often accompanied by a range of mild to severe health problems. It is not my place to say either is better than the other any more; certainly both terms (as discussed here and elsewhere) have their positives and negatives. My particular condition (originally diagnosed as Klinefelters until karyotype came back 46XY) now termed a form of hypogonadism due to unknown causes has not really fit the criteria of what used to be (and still somewhat is) considered "genuine" intersex, according to standards defined by some. But it does definitely fall under the DSD "category". Being trans somehow put a negative factor into the former, and quite possible may do so in the latter; so I have little confidence in either in that respect. I don't consider myself a disease, but I can understand why those (Katy and others), who with severe CAH , consider their condition a disease or disorder.....and do not like the term intersex. To a certain extent, I, too, have and have had medical issues related to my hypogonadism. I can also understand and relate to what you, Jim, have said. In my opinion, the polarization between the conflicting viewpoints only serves to make me feel that less confident in human nature being able to see the real problem at hand…and it is not those who consider themselves intersex and dislike DSD; nor is it those who consider themselves DSD and not intersex. You (and other longtime BLO members) know what I mean, Jim. I’ve emphatically stated it many times in past rants. Nowadays, for my health, I try to be less vociferous and emotional about it. It’s sad to see those of us who are considered not normal (i.e,; diseased, disordered, or immoral) by the beep-beep-beeps ….the “N” word….) be divisive about it all. I’m wondering if a “coalition” or at least an acknowledgment can be made that recognizes the positives and negatives of both…and can work from there to make life better (medically, socially/legally, and psychologically) for all of us. I have a feeling that it will take a lot of time and effort. In the meanwhile, we shouldn’t let disagreements lead to rejection of one or the other…..or each other.

Dana

[RGMCjim]

Dana,
Like so many other intersexed people when I went to the medical profession for help with physical problems, they only cared about my gender. My mother took me to one of those hospitals influenced by John Money (Buffalo Childrens) because I'd stopped growing and hadn't started puberty at the age of 14. I was born with ambiguous genitals and nobody knew what would happen when I was old enough for puberty. Their only concern was that I'd been raised a boy and they were convinced my penis wasn't big enough to succeed as one. Their main objective seemed to be to try to sell my parents on a phalloplasty which I swore I would run away or kill myself to avoid. They were such weirdos with such whacky ideas, and they scared all of us to death. My parents had fought over the gender police vs. an endocrinologist and my father finally exploded and took me to an endocrinologist at home. Finally I to grow up like the other boys. My mother was convinced I was as freak and without my Dad would have thrown me out. But no one pursued the cause of my being intersexed! My mother took progestin for months before and into her pregnancy with me, but no one told us that probably meant I was XX. I've had nasty adrenal problems all my life and so have both of my parents and yet no one suggested they might be carriers and I might have CAH. At 49 I finally ended up in the care of a doctor who put it together. I know so many intersexed people whose physical problems related to the cause of being intersexed have gone untreated, improperly diagnosed, and even denied while far too much concern was given to their gender. In her book, "Intersex and Identity, the Contested Self" Sharon Preeves interviews with the intersexed lead her to the conclusion that the creation of a "social emergancy" about our gender caused most of our problems, rather than preventing them. Our life stories all seem to bear this out. My concern over the new guidelines is that they don't take that into account, and don't insist on enough community and parental education. The shame, secrecy, lies, and mutilation are not eliminated by the new guidelines. If we settle for them, we can not do so without acknowledging that they don't do the job WE, the intersexed wanted.
One of the things I find especially alarming is that depite knowing that intersexed people may vascillate between genders before settling in the one that fits them most closely, and knowing that this is totally unpredictable there seems to be a push on to give the searching intersexed a diagnosis of gender identity disorder and handing them into the treatment protocols for transsexuals. This is happening in the U.K. and I know one such person who was given a hormone cocktail as per the transsexual protocol that made her sick. She's not male transitioning to female, she's intersexed and her natural hormone levels and PAIS counterindicate what you'd give a MtF. Nevertheless, her doctors just don't get it because the labels matter more than the REALITY. Protocols create a "paint by the numbers" approach to medicine that can have dire consequences for people who aren't ordinary. It is just this sort of thing that I am most concerned about for all of us everywhere. We seem to have a whole lot of these kinds of problems because our health are is not job one to our Physicians. Worrying about our gender is. Our gender is something we can and do figure out for ourselves just fine. We don't need someone to force a gender assignment on us and back it up with hormones that don't work, and surgery that mutilates. We're quite capable of figuring out our gender, working with endocrinologists to achieve healthy hormone levels, and chosing or NOT chosing designer genital surgery. We do need our medical issues diagnosed and treated. This just isn't happening like it does with the general population, or with other groups of people with conditions and anamolies that can impact their health.
I know exactly what you mean about past arguments over who is/isn't allowed to call themselves intersexed. I'm dead set against that. Whether we call ourselves intersexed or disordered or blue jello if we act like a bunch of bitchy control freaks declaring who is or isn't one of the chosen ones we're wrong. Right is to embrace each other, welcome one another and work together to make the world a better place for ourselves.
I hope everyone here and at the other intersexed sites I hang out at gets the sense that I'm neither judgemental or exclusionary.

Jim

[Priestess]

Jim,
I was kicked as a patient by two separate transsexual's therapists for not having gender dysphoria as they recognized it. And I can't imagine that those two were unique. So I think that basically the transsexual establishment really doesn't want the intersexed. They can't handle clients who aren't primarily motivated by clothes and repressed feminine feelings. It's so wrong for the doctors to ignore us and tell us to go do a trans-thing that we aren't welcome to either.

(plus most trans people have a lot of envy and hatred for the intersexed)

[Dana Gold]

Well, as I said earlier, I have little confidence in either (intersex or DSD) established regimens due to the very thing both you and Priestess have pointed out......the issue of accepted gender protocol. As for what you've said about trans people, Melissa, well....the same can be said of many intersex people that feel negatively about trans....and you have been one of the ones who have "lashed out" at both intersex (here at BLO) and trans (in your posts)....as have done some who regard themselves in the DSD camp. Something about being trans (and not envious and hateful of intersex) seems to bring upon one the situation of being universally disliked...but, as I have to say, some trans have brought on the shit by their own "idiosyncrasies". When I first came on board here at BLO; I found out that some trans people who were already diagnosed with a intersex/DSD found themselves not very liked by either the trans or intersex "communities". This is worse than a slap in the face; after being shat upon by the "normals", to be pissed upon by both of the former. So be it, and I now do not consider myself to be a "member" of the trans, intersex/DSD, and especially the GLB "communities". I am my own person, however I can empathize, to a certain and limited degree, with those who are gay, trans, intersex, and DSD....since I have many of the same "enemies" and experiences, including medical issues related to the hypergonadotropic hypogonadism of "unknown etiology", which ironically, I had to point out to both my PCP and endo, the ramifications of certain health issues brought on by such....because, as you said, the prevailing concern was the "gender identity disorder". It is for that reason that I sometimes do not feel kinship with the majority of humankind and many times rather than wishing I had not been born; I wish I had not been born on this wretched planet. All I've wanted for most of my life is to be left the f**k alone and live my life as I was and am without having to conform (which I did anyway) in order to be accepted and liked ...and without all of the hysteria/paranoia, and socio-religious concern over my perceived "homo/trans-sexuality" by the normals and then the scenario of having my self spoken for and judged by some of the LGBT (not all gays like the "trannies") and scrutinized by some intersex/DSD folks....although, generally, I must say, that my experience here at BLO has mostly been positive...and I am thankful that I came here. It is, as I've indicated earlier , human nature that brings on the strife and accompanying negativities toward others and oneself.

PS: I'm only trying to be fair and conscious of each individual's needs and desires when it comes to the DSD vs intersex issue.......the reality is some will always feel better about one or the other....and I, for one, will not counter or argue against that reality....the freedom of independent choice by that individual.

Dana

[Priestess]

Hi Dana,

I never would have lashed out against the intersexed until nearly everyone turned their back on me and gave me their silence, all because I didn't have an officially sanctioned syndrome to label myself with. Anyone who wanted to could have looked at loads of abnormal medical reports, and they shunned me for lack of a word. Words aren't realities, they're only a form of communication. I've actually had conversations with one person until they asked if I'd gotten an official diagnosis yet, and then they literally stopped talking to me. With all the medical evidence I've collected, my lack of a diagnosis wasn't from lack of a condition to find, it's been due to highly prejudiced doctors who don't want to analyze.

I'm still a human being with feelings, and I'm sure these same intersexed folks manage to be sociable even with "normal" people, so even if someone didn't believe I had anything wrong, how did I get to be the untouchable?

Likewise, I've known for a while that the AIS commuity is paranoid, and it hasn't been a problem for me, I always figured it was their right. Afterall, they wouldn't want someone like me hanging around. But then in the last year or so, I've heard tales of real documented CAIS women being ostracized for reasons that seem trite and shallow, and I just have to shake my head.

The transsexuals? They've treated me at least as badly. Because they want everyone to be their way, and have no tolerance or respect for human variation that violates their ideology of "emotional gender first", or their mantra of "repressed inner femininity". Some say they do, but it's all words, when it comes down to things they really don't. They don't understand the experiences of someone who was physically/socially prevented from living the normal lives they are forsaking. I was openly laughed at and insulted, in public, by those people. And slandered behind my back. All by a bunch of people who without exception were entangled with spouses and children, and who tended to not have enough guts to reach out and take the lives they said they wanted.

DSD? It sounds a little creepy to me, now. But like a twisted version of that old song by the Who, "meet the new word, same as the old word ..." I think the people who are most enthusiatic about the changeover are fooling themselves, but that's just my temporary opinion. I've had a problem with one of the DSD proponents here, but that dispute is only personal.