Thursday, January 07, 2010

I am fevered and do the R word. Plus Intersex: 3 million USA women gagged by society, by us.

I have been researching this blog post for hours, and now my fever is back (hence a slight delay).

But it is a really interesting post about the lie of ‘Normal.’ Diversity is ‘Normal’: did you know that over 3 MILLION women in US and Canada have one of the four of the most common intersex conditions. 1) Complete Androgen Insensitivity Syndrome – an XY female who does not have a uterus and because they cannot absorb Androgen, they end up looking very, very beautiful. But neither Christianity, the ‘science’ of the west, or feminism, has created or defended a place for an XY female.
2) MRKH – a female grows up and does not have menstruation, because the Uterus is small, misshappen or absent. The male gynocologists are more obsessed however with the absence of a vagina (no vagina, no heterosexual sex, whether there is female pleasure or not, no ‘Normal’, so pressure to dilate or create a vagina is pushed on the teens/females in early 20’s who are confused and scared with ‘What is wrong with me’ – the solution, ‘You need heterosexual sex’). Not so great unless you like lots of pain and dialation. And it ignores bisexual lesbians and asexual women. Asexual women, those who desire no sex, are over 1% of the population, but are "oppressed by a consensus that they are nonexistent," and left behind by both the sexual revolution and feminist movement. (a true statement from an academic paper now 40 years old – what has been done in two generations to acknowledge and give rights and protection to them?)

3) congenital adrenal hyperplasia (CAH), the adrenal gland makes extra androgen which results in facial hair, body development, hair loss and other androgen related conditions. In some ethnic communities this is more common than 1 in 300 births

4) Turners Syndrome: is a disorder caused by the loss of genetic material from one of the sex chromosomes (an X) – often women literally have just one chromosome, an X. So things like puberty may never happen without intervention. Talk about traumatic teenage years. Or the chromosome has so many errors that estrogen needs supplementation: menstruation and fertility are both almost always absent.

A couple million women and yet no one wants to talk about it. In the Olympics, 1 in 400 athletes failed the ‘chromosome’ sex test, and yet all were proven to be female. ALL. Which is why the IOC dropped it. The Athletics and other organizations did not. So, due to the ‘embarressment’, the ‘other’, the ‘they don’t look right’, the not willing to talk about it, over 2% of the women in North America will never be able to compete at the Olympics (coming next month).

Just one of these conditions is more common than Lupus, and yet we never talk about it, never hear about it, even though we know in our life, as we pass by people in the stores, the woman serving our latte, many, many women with intersex conditions. But the first thing the gynecologist tells them: “Keep this a secret”

Being human is something to be ashamed about.

That’s the teaser for tomorrow’s blog. Also, guess which intersex condition I am currently getting tested for! Get it right and win…..this NEW CAR! (I’m sorry, I was channelling Bob Barker and the Price is Right). No, um, how about, a nice postcard? My medical book on treating various military burns including flame-throwers and napalm?

Oh, the world is spinning again. I am feverish sick.

I have been feverish because my body is too weak that multiple systems are not able to function correctly. This has gone on for days. I finally decided that one hour every two days of non-fever was not actually ‘reserves’. So I am to bed, as I was all yesterday. Yes, you heard it. The mighty has FALLEN!: E.F.M. is at rest (the short term, not the ‘we put you in an incinerator’ kind). See, I do know the meaning of the word ‘rest’. I just happen to not learn quickly. But if I win the post and lose Beth by dying, that is overall a loss. So I rest.

At a tribute to my hallucinations, the rest of the blog will be illustrated as “Beth and Linda, the Yaoi version.”

First Linda had to come rescue me from where I was flushed and fevered.
(Is it wrong that I WANT to have that ass? I know it is a guy/uke but what a delectable ass, particularly if Linda found it so, I could transfer and wheel around naked all the time! Yum!)

So last night, I had a fever so high I was doing a ‘Taxi/Untouchables’ to my small cat plushie called ‘pounce.’ “You looking at ME!” I was shouting at 1:00 a.m. from my pillow, “You looking at ME! You land on me, you put one of us in the hospital, we put one of you in the morgue!” (I had a really great Scottish accent too). Linda turned Pounce’s head so she wasn’t looking down at me and was able to calm me down and get me to sleep.
Asleep until 4 a.m. when I woke up and started talking to my pillow and the ice pack under it. One ice pack I call “Mr. Four.”

“Bring back Mr. Four!” I asked Linda, “Mr. Four’s friend has a limp handshake, and lacks his firm resolve and fortitude!”

Poor Linda.

Today, I have been sustaining myself on Pocky, and now it is off to bed. Linda picked me up the dark pocky, the ‘Men’s Pocky’ – because in Japan (and here I guess) men are supposed to like bitter things and women are supposed to like sweet. I like Chocolate. Mmmmmm. However, for guy who start eating pocky (which is flavor on a stick, like chocolate and mixed almonds dipped – think a dipped cone but no ice cream to melt), beware a slight side effect: the ‘Pocky Experience.’ For those young faced or particularly smooth skinned men, whose pocky eating is interpreted as the ultimate ‘come hither’ seduction by the Seme’s out there, you may be losing your pocky….but gaining a new….um….friend. Just a warning.

Off to bed.

My full blog post including PCOS, FSD, RSD and more of the diversity of being female is tomorrow. That is a diversity not under the oppression of ‘Normal,’ Because who DOES fit those images or expectations thrown at you every hour by society regarding being perky but non-confrontational, having the right body shape, the ‘can do everything, work, have a perfect relationship and host a dinner for 14!’ expections until you feel like an ‘other’, and ‘outsider’ and if in any way genetically different, a ‘freak.’

I hate that word. To know that simply by being born with a condition of genetic diversity, your only option a few generations ago was a sideshow…..not a good headspace.

20 comments:

Lene Andersen said...

Looking forward to the 'full" blog (I thought this one was pretty full). And why test for this? Does it matter in terms of your illness and/or treatment? Does anyone besides the doctor care?? It's not going to change you being Beth, so...?

Sigh. What happened to "don't exhaust your patient for your curiosity"?

Go rest. Get rid of the fever.

yanub said...

I can not even begin to think what intersex condition you might have, if you have one. Nor can I even begin to care, except how it might affect you medically. You are Beth. What else do you need to be? Beth is enough.

As to sexual interest, I thought it stood to reason that the range of human sexual interest would also include "not interested."

Looking forward to tomorrow's post!

FridaWrites said...

I agree that diversity is normal. My guess is 1 because you're very beautiful or the first part of 2 because you don't fit 3 or 4?

Go away, fever! I sleep with ice packs too: shhh! I should give mine male names, hahahahaha. Who're we sleeping with tonight?

That's me reading in the picture with candy, disheveled, reading romance and manga.

Aviatrix said...

There is so much genetic diversity in our species that medical descriptions of how to do a procedure sometimes say things like "this vein may be here or it may be here." We're incredibly different in ways that may have helped our ancestors, may be genetically linked to other characteristics that helped, or may be completely neutral but never hurt anyone so it persisted. I think it's amazing.

And now I know what a uke is.

Raccoon said...

Uhm... Okay?

I'm trying to remember the definitions from a psychology class from long, long ago.

Doesn't "normal" depend on the set or subset? So, for all of these women, aren't they normal? And all the rest of the women abnormal?

The first two pictures are gorgeous! The rest of them, ehh. And what is it with the Japanese and panty shots?

I'm glad you're getting some rest. What's going on with your laptop?

Today's mail brought me both a postcard AND a package! Unexpected, both!

SharonMV said...

Hope the fever goes away. I sleep with an ice pack under my neck most nights. i don't have names for them (at least not yet). Maybe we should start a club - love to hate your ice packs?
One university rheumatologist specialist that I saw last year wanted me to get tested for Turners, even though I had puberty,regular menses & all that. He still thought i might have some kind of partial syndrome. Because my hands are so small, I'm so short, my elbows are at a funny angle. he even called in an endocrinologist colleague to look at me. He didn't seem impressed.

Sleep well and quietly (for Linda's sake).

Sharon

Anna said...

Got a really beautiful postcard today. Thank you! Yes, one really wants to hide in books sometimes.

Well, intersexual disorders or whatever ones caling them is interesting. Mine has, thank God, corrected itself. I asked the doctor why? How come I have this for at least 20 years and then just snap out of it, he didn't know. I thank God. But it is sort of an irony that at approaching forty I am suddenly fertile! Hey, a few years earlier could have been nice! But as a friend said with a somewhat cynical smile, well, now you at least will have an easier menopause. well... that is good.:)

Love anna

wendryn said...

Normal is ridiculous. Normal doesn't really exist - it's an average. All of us are not-normal in various ways. It doesn't make us any less human. You are a person. You are human. You are loved, and valued, and important.

I wish people would get over the concept that "normal" is something that people should be. Ticks me off.

I'm sorry to hear you've been so sick, and that Pounce was being a pain. She isn't supposed to be! :P Do, please, rest. I'd like you around as long as possible. Yes, selfish, but you are important.

*hugs*

Tom P. said...

One of our best friends has Turner's Syndrome (she is XO). When she was born, her parents were told that she should be institutionalized because she would never have any intelligence and would never be able to take care of herself. Her parents ignored this idiotic advice and took their daughter home and never treated her any different than any of their other children. Today she has a PhD in education and has two children. It frightens me to think what would have happened to a perfectly normal girl sent to an institution.

Abi said...

Well, you'd have noticed 1 or 2, surely, due to lack of menstruation. 4 doesn't seem right - if I remember rightly, people with Turner's syndrome are often quite short, due to the whole puberty growth spurt thing not happening. You are quite tall (although there is the Marfan's), so I am thinking you might be being tested for 3.

Those first two pictures are gorgeous. I like them a lot. And yes, I would be happy with the bottom from the guy in the third photo, although it would be a shame to be so much less curvaceous than I currently am.

Dark chocolate is for men, and milk for girls? Perhaps the boyfriend is a bit uke, then... He seems to have this amazing ability to taste even the tiniest bit of bitterness and object to it. Also, he has long hair and skin which is far more smooth than average. Not that I have closely observed the skin of a large sample of men to reach this conclusion, you understand. Ukes don't have to have a seme, do they? 'Cos I want to keep him!

JaneB said...

Intersting post and some lovely pictures as usual. I don't think I've eve met a NORMAL woman, who fits every aspect of the stereotype for my class/context/etc., yet I still sometimes judge myself negatively against some idea of normal - human brains, our sociocultural conditions, are WIERD.

Georg Facius said...

The IOC is still in favour of gender testing, however may i suggest you take a look at:
(Link not an scientifically accurate or citation supported site and removed)

Elizabeth McClung said...

Georg Facius: The last Olympics which used gender testing was the 1996 at Atlanta. This was covered in several earlier posts, so I did not bother including the links/citations. Eight female athletes failed the test but all were later 'cleared' as female (the recent attack on the south african female runner Semaya had further entrenched my observation that any 'gender' test which is only applied to one of the two gender classifications is not a gender test but a social enforcement).

After 1996, the IOC reviewed policies and decided to stop the chromosomal testing due to the severe damage done to athletes (usually retirement) and ineffectiveness of the tests. K. Mascagni, "World conference on women and sport", Olympic Review XXVI. vol. 12, pp. 23-31, 1996-1997


""Gender verification has long been criticized by geneticists, endocrinologists, and others in the medical community. One major problem was unfairly excluding women who had a birth defect involving gonads and external genitalia (i.e., male pseudohermaphroditism). ...
A second problem is that only women, not men, were subjected to Gender verification testing. Systematic follow-up was rarely available for athletes "failing" the test, which often was performed under very public circumstances. Follow-up was crucial because the subjects were not male impostors, but intersexed individuals."
J.L. Simpson et al., "Gender Verification in the Olympics", JAMA (2000) vol.284; pp.1568-1569.

While the IAAF technically stopped screening according to gender, they have been openly intolerant of variation: 2006 Santhi Soundarajan was stripped of a medal for being an intersex female, probably CAIS/AIS, 2009 the open testing and gender 'leaks' regarding the teenager Mokgadi Caster Semenya put this female runner in hiding instead of preparing for the Olympics after a World Championship win (the IAAF publically/privately tests, but has no protocol on when someone is uneligible) - Semenya is almost certainly eligable for the Olympics....if she can qualify by being able to enter IAAF events. Dec 2009 she was Track and Field's number 1 800 meter woman runner of the year.

The same ambiguity occurred with the IAAF and Oscar Pistorius: diability and sport with all of IAAF arguements not a limitation of the composition of the blades as is done with other sporting equipment but with ambigious 'testing' to determine if an athlete already qualified for the Olympics 4 by 400 relay 'should' be allowed to compete with able bodied athletes with arguements like, 'the rules require the foot to be placed against the starting block and Oscar Pistorius is in clear violation of that rule' (due to having no feet). The IAAF's open bias also makes it so that any open transitioned transsexual athletes, approved for competition under IOC regulations would not be able to qualify under IAAF current bias.

Baba Yaga said...

Sorry you're still feverish, but glad you've realised that interludes without fever don't constitute reserves. Working out how many things don't constitute reserves is one of those ongoing processes, for me.

From the outside, intersex is interesting. (People are interesting, after all.) And seems gradually to be better acknowledged... If not yet in the 'mainstream'.

I only hope the test is for helping Beth be better purposes, not interest purposes. I don't trust that medic you last spoke of not to treat you as a one-woman travelling show. Or to treat you as a 'deviation', rather than as an unexpected brand of normal.

...Binary thinking is easier than spectrum thinking, I've concluded. I believe that we're wired in such a way that 'neither' is easier to grasp than 'both'. Yet in so many circumstances, both is the truth.

Elizabeth McClung said...

This blog is a safe space for LBGTQI individuals amoung others.

I would ask when commenting that people remember that while not outting themselves, women and men with intersex conditions, transitioned males and females, transgender individual will all be reading both the posts and the comments.

Speculation which would be offensive if it was applied to race or orientation, firey damnation will be limited with an email explaination in order to create a safe emotional space for all readers.

I do look forward to comments, but though the medical condition and experience may not be yours, it is the experience of individuals, real individuals, who may be your care giver, your roommate, your friend, literally anyone. That's really all I ask we remember. That if we don't want people going, "Those disabled, you can tell they aren't really mentally aware at all if they use a wheelchair,...." then try and think how comments might feel to others in areas of speculation.

Thanks, I just wanted to remind people because I found myself slipping and using 'intersex' instead of 'person with intersex condition' or 'intersex women'.

A Bear in the Woods said...

Oh Beth,

Thank you for teaching me about Yaoi.

!!


I'm shocked about the figures for female intersex issues.

Thanks for that, too.

Anonymous said...

This will all be so much easier in the future, when we will all have cybernetically enhanced bodies. Then nobody will care about what kind of plumbing you have down there.

Neil said...

Firey damnation? I think I'd include some medical professionals in that outcome.

So some humans aren't like others. Who cares? Maybe the doctors for Tom P's friend, but are those doctors able to do anything useful?

At this point,dear, I would agree with the first few comments: why bother with testing? Is it for your benefit or the doctors'?

Love and zen hugs,
Neil

Matthew Smith said...

Regarding CAIS, the status of people with this condition is a relatively new issue, so I think it's a little unfair to bring Christianity into it. Until science demonstrated that such people had XY chromosomes, they would have been regarded as simply female, even if it was known that they were infertile or had a birth defect. There would have been no identity crisis and no Germaine Greer to say that such people are "feminine" but not really female and other such nonsense. If anything, such women had a place and science destroyed it.

I think there's a case for going back to judging some such matters by their appearance rather than by science. The same, I think, is true when a mother gets implanted with someone else's embryo: although it would not have been possible in the past, it is still that woman who carried the baby to term and bore him/her, even if the genetic parents have some rights as well. When I put this point to people when this discussion came up a number of years ago in the UK, people said, "no, DNA, DNA!". The physical connection the birth mother had was insignificant to them.

Elizabeth McClung said...

Bear in the woods: that is just 4 of the over a dozen intersex conditions - which, the most common for men is 1 in 500 just by itself. Not to mention the variations. But thanks.

Anon: Yeah, won't the world be better, no disease, no discrimination once we are all heads on cyber bodies - um, not! In case you hadn't noticed, faceless, or icon forums are often the least kind and worst abuse and most cruel of human behavoir. We might be able to take the plumbing out the equation, but not the human.

Michael: Well, fair or unfair, when people act like bigots, they kind of get brought into it, whether it is the name of Christianity, and intolerance of any diviation, The being excluded from the temple of the Torah and prophets, or the kindness of doctors who make it so that your first memory is of measurements, your clothes gone, a room full of people, that and surgeries. Germaine Greer is fortress mentality, and why, I do not know, but maybe because everyone likes to look down or exclude someone. Science didn't make Germaine Greer, she is responsible for her own words. So are the major religions. When something is put before the sanctity and dignity of humans, and hypocracy needs validation, please excuse me.

You might want to think about saying, "I think there's a case for going back to judging some such matters by their appearance rather than by science." when talking about intersex issues. Or rather - speak on woman Michael! Since I can't see your dick, the traditional 'see it, grab it' standard from popehood to Emperors for being male - welcome female Michael Smith, judged by solely your cyber self - and what a rack you have too!