Friday, 11 September 2009

In re Caster Semanya

A post I've been cutting and pasting in various places, where ignorance and malice are equally mixed.

If the reports are correct, Ms Semanya has PAIS-6. Partial Androgen Insensitivity Syndrome grade 6, where grade 7 is Complete Androgen Insensitivity Syndrome (CAIS).

What this means is that she's almost completely immune to testosterone and other androgens. "Almost", but not quite completely. If she'd had CAIS, she'd be ultra-feminine, more so than standard factory model women. It's an open secret that most of the supermodels who don't have children have CAIS, as did Miss Teen USA 1991.

From the Internation Amateur Atletics Association rules on the subject :
---
(The crux of the matter is that the athlete should not be enjoying the benefits of natural testosterone predominance normally seen in a male)

6. Conditions that should be allowed:- Androgen insensitivity syndrome (Complete or almost complete - previously called testicular feminization);- Gonadal dysgenesis (gonads should be removed surgically to avoid malignancy);- Turner’s syndrome.

(b) Those conditions that may accord some advantages but nevertheless acceptable:- Congenital adrenal hyperplasia;- Androgen producing tumors;- Anovulatory androgen excess (polycystic ovary syndrome).


Unlike other women, she cannot get the full performance benefits of testosterone, since she's almost immune to the stuff. Having three times the female average could well be less effective when it comes to building muscle mass than a normal amount in an average women. Many female athletes have high natural levels of testosterone anyway - though still a third or less of an average male, and a tenth of a male athlete.

As regards the "dangerous condition" of internal testes, the danger isn't exactly immediate. There's a tenfold normal risk of cancer, and it would be wise to have 6-monthly checks, and gonadectomy if any pre-cancerous lesions are found, but that's it. At worst, 1 in 50, and the estrogen, the female sex hormone also produced by the testes, is useful for preventing oteopyrosis and other conditions, so it's swings and roundabouts. The real reason for gonadectomy is to stop other people from being upset about the idea of a woman with testes in her body.

I've stated the IAAA's policy - but that policy is not always followed. The Indian athlete Santhi Soundarajan had CAIS, but was stripped of her medals by Indian authorities, not because she had an advantage, but purely for being Intersexed, a sub-human. She attempted suicide shortly thereafter, as Ms Semanya may do.

She's an 18 year old girl from a backwoods African rural village who has given her all to become a world-class athlete. Now she's had the double blow of being told she'll never be able to have children, and having her life and ambitions shattered by a global surge of ignorant bigotry.

Some of which is apparent in these comments.

Oh yes, I'm Intersexed too. I'm also 51, a middle-aged woman old enough to be a grandma, and used to this kind of thing. She's only a teenage girl. Some here forget that.
For the depths of pig-ignorance and blind malice shown by some, go no further than the comments at the NY Daily News.

I've been contacted by a TV producer (in another context) about a programme on Intersexed people. She's having difficulty finding people willing to place themselves in the spotlight. Have a look at the many articles and comments all around the world, and you can see why.

At the risk of being tediously repetitive, I've had it easier than most, and I know it. It's only because of that that I don't worry about keeping a low profile. I live in a relatively well-educated and tolerant society, and although I'm not proud of my unusual medical situation, I'm not ashamed of it either. It's the way I was born, as some are born left-handed or colour-blind.

Some people have difficulty with that. Not the medical situation, but the fact that I neither advertise nor keep secret. That I refuse to feel ashamed, just because in their view, I should do. They don't know how to handle that. Someone who's honest, unashamed, but not, it has to be said, unafraid.

But if I don't speak out, who will? To those who have been given much, much is to be expected. I'm not even sure that I'm doing my part, I feel I could and should do more. Life - bringing up my son, and my PhD - gets in the way though, and there's only so many hours in the day.

More on AIS at the excellent site Second Type Woman.

30 comments:

JM said...

Hi,

First time I read your blog, arrived while searching more info on the subject of intersexuality.

I was shocked by reading the words "hermaphrodite" all over the place, which, even though it's not offensive per sé, we all know the effect it causes on the masses. Also, I think the term isn't 100% accurate, since hermaphrodites are "expected" to be able to reproduce with themselves, which is clearly not the case.

Anyway, I learned some new things here and I wanted to say "thanks for the info". Glad to read a "clean" blog on this subject.

Take care!
JM

Sara said...

Hi Zoe, and thanks for "just being you". Life does get in the way of being an activist if that was your inclination or personality. I think you are far more effective on your current path, as living proof. Letting people know that there is a complete story, a family, a life *and* a willingness to not be shamed. In the end, that is what it is going to take to normalize all conditions that fall between uber male and uber...um, well heck, CAIS just blows that to bits, now doesn't it? Anyway, nice post!

Lloyd Flack said...

But I would expect that she is getting a significant performamance advantage from the high testosterone level, just not as much as a male with the same level. After all what raised questions was the combination of high performance with a skeleton and musculature that appear to be significantly masculinized. Just how do we handle the intersexed in sports competition in a way that is fair to everyone? I can't think of an answer right now.

Anonymous said...

CAIS its completely out of the way. But PAIS-6? Are you sure? Because her body really looks male. So I dont think a PAIS can develop that well into a male (looking) body unless its in a lower number. Something like 3 or 4.

I think perhaps she was born ambiguous and you know what happens with those babies. Worse in Africa. Then raised as she were and now with all this problems and humiliations.

Then again I wonder what gender Caster is. But since she presents as a girl. Thats it unless she tells otherwise. Intersexed people are just persons with something odd in their body. But are the same as others in regard to the rest.

And hermaphrodite? Let that word rest, dont use it since its incorrect.

Zee

Nicole said...

Are you serious Lloyd?

Do you know where sport really ranks among things that truly matter in life? In my opinion it ranks right up there with shock jocks and gutter media, it ranks right alongside conservatism and bigotry and organised religion.

It's fun to compete in and it's fun to watch, except when ignorant assholes who need to categorise everything decide to get nasty when somebody comes along who doesn't fit their labels.

Start thinking outside the square for christ sake!

Anonymous said...

I just want to say thank you Zoe. I actually found myself anxious when you posted less for a few days! I don't know a lot about intersex and transgender stuff and I found I emotionally depend on you interpreting the news for me. (No pressure!) It is so wonderful to have a calm, science-oriented advocate who can explain things for me a little. It's an area I care about because altho I'm comfortable in my female body I do think of myself as both male and female. I'm not your more usual type of transgendered person so I don't open my mouth much for fear of offending the transgendered and intersex people who are wrestling with bigger issues than I am. Your blog helps me understand transexual issues much more. Thank you.
anonflexigender

Anonymous said...

Hi, Zoe. And welcome back. Did you see Gordon Brown's apology to Alan Turing? It jumped out at me what happens when contra hormones are given to someone who is not transsexual. Anyway, I'm with Nichole on the way that the importance of sport is blown out of proportion. I hope that Semanya can see this some day, maybe even today, and will just be able to move beyond all of this.

Anonymous said...

Hi Zoe,
Thanks for this. I've already sent a letter of complaint to ABC Radio Canberra and will be writing to the Canberra Times for today's article "Semenya's family angered by hermaphrodite newspaper reports". Seriously!! I'll also be phoning the CT on Monday to cancel my subscription and make sure they understand the reason why. Both the ABC and the Canberra Times appear to have outsourced their "research" to the Murdoch gutter press.
Peta B.

edith said...

Hi Zoe,

You provided a link to the "Second Type Woman" page. I don't know if you are aware of the disclaimer at the top of the page which reads:

"When I established this page in 2000 it soon incorporated feedback from various relevant sources, nevertheless in May/June 2003 several ladies with AIS strongly objected to the content."

The person who maintains this site has been described to me in very unflattering terms. I, personally, am not familiar enough with her to have formed an opinion. I think it is very doubtful, however, that this page could be considered a reliable source of information on the subject of Androgen Insensitivity Syndrome. Just my own two cents.

Sincerely,

Edith

Race Traitoress said...

Zoe, I first encountered you over at field negro blog, and imagine my delight to run into you again reading the article about Ms. Semenya at the Guardian.

Thank you for your informative and interesting take on this heartbreaking issue. I fear Ms. Semenya will never run again out of fear over the second glances and cruelty of others.

C said...

If you are intersexed or whatever it's being called, then you should play with the boys. Therefore you'll either win or have to work harder for it. You shouldn't be playing against the women since there's an unfair advantage.

Zoe Brain said...

C - Y?

For example, the Kenyan runner who came second is of East African descent, so likely has a distinct genetic advantage over, say, europeans.

Should we segregate on the basis of race too? Or perhaps weight, or height, or amount of long muscle cells? Do we ban swimmers with big feet, because it's unfair to the rest?

To call this woman wholly female is a minor inaccuracy. To call her male is not just a major inaccuracy, it's a gross injustice too. Also inhuman.

Lloyd Flack said...

We split sports into divisions by sex, age and for some sports body mass. The aim is to allow all participants to feel that they have a meaningful chance of winning if they put the effort in. The divisions that we use are coarse ones that most people can be slotted into very easily. Race, being far fuzzier than sex is an example of an impractical criterion. Divisions which require elaborate testing for most participants are not practical. People just accept that there are genetic differences and advantages from that are OK, it is part of aptitude. Also the cost of winning should not include things like wrecking your health or masculinization of awoman. Well, that is wrecking one's health.

The people that commenters here are not thinking about are the loosers in competition. They have to feel that they lost fairly. If that does not happen then the sport is destroyed. Sport does not mean much to me or to commenters here but it does to many others. That preference should be respected. The scorn for such enthusiam that I see here is not a nice thing. Try to put yourselves in the position of other competitors. Argue in a way that will convince them.

I don't know what is the best solution here. This is a difficult case. Whether she is allowed to continue to compete or not she should definitely keep those medals that she has already won. What it comes down to is will her condition demoralize other competitors in her sport? The traits that Zoe mentioned do not do so. The intersex conditions that the IAAA accepts despite some advantages do not appear to do so. Will her fellow athletes accept Miss Semanya? They are ultimately the ones who count.

Nicole said...

Lloyd,

I am a former competitor in three vastly different sports and a long-standing administrator in another. I love sport and I love competition within it, but I also have a realistic understanding of where sport stands in relation to other aspects of life.

In my opinion, sport, including the extremely commercialised competitive sport we are dished up these days ranks very low on the importance scale as mentioned in my previous post.

The purpose of sport is to have fun and keep fit.

Nobody loses when they are having fun, nobody loses when they are keeping fit.

Therefore those that didn't win a contest shouldn't be upset or angry enough to start destroying a competitor's life.

Laserlight said...

"Do you know where sport really ranks among things that truly matter in life?"

High up there. Yeah, it seems weird to me too, but count the number of people who get caught up in the Super Bowl, the World Cup, the Olympics, the Final Four, and you'll have a hard time saying "it's not important."

Sidney said...

Hi Zoe, After reading the Daily Telegraph of London, I read some of the 299 comments and per usual everybody has an opinion about something they know nothing about. All speculative! As a Urologist, who lectures on this very subject to medical doctors, let me tell you what I think I know from reading the AP from Pretoria, SA. Caster Semenya has a probable genetic Disorder of Sexual Development known as Partial Androgen Insensitivity Syndrome, probably Grade 5 or 6, where the external genitalia are female-like and the internal genitalia are vestigial testes, which produce Testosterone and Estrogen. I say probable because we cannot know if she has any ovarian tissue mixed with the testis tissue until these vestigial organs are examined under the microscope by a pathologist. This will probably never happen, unless it is presented to her as a condition for receiving female hormones. At this moment everyone is assuming she is an XY woman. Now somebody said she had three times the normal female Testosterone level, which according to this one lab gives her less than their normal male values. Now every lab has its own normal values and we have not seen any numbers. So here are the values from just one lab, not her testing lab.
http://www.bloodindex.org/normal_laboratory_values.php
Determination Normal Reference Value
Testosterone: Conventional units SI units
Female 6–86 ng/dl 0.21–3 nmol/L
Male 270–1070 ng/dl 9.3–37 nmol/L
But it doesn't matter what her serum Total or Free Testosterone is because the definition of PAIS implies that the cells which receive T cannot utilize it because their Androgen Receptors will not bind the T effectively. That's why she has female external genitalia at birth. Interestingly the research in this area is so complete that the Chromosomal mutation on the Androgen Receptor can be identified. Usually these women and I say women, because that is how they have been raised and gender identify as female, are diagnosed in their teens because they cannot menstruate or conceive. Now in truth I know no more about her physical condition than what I read in the newspapers. Is the London Daily Telegraph a tabloid or the cousin to the New York Daily News? Poor Girl !!!!

Anonymous said...

Hi, Lloyd.

I'm with Nichole again. Sport should be for fun and fitness. The uber competitiveness and money involved is harmful not healthful.

One could argue that sport has replaced religion these days as the opiate of the masses.

:)

ariablue said...

I'm surprised you don't mention OII or the real support groups for people with AIS.

http://www.aissg.org/

http://oiiaustralia.com/caster-semenya-international-association-athletics-federation-grow/

http://intersexnews.blogspot.com/

http://sophiaofthescythes.wordpress.com/2009/09/12/the-media-coverage-of-caster-semanaya/

Why go to a TG site for intersex information? Very puzzling.

Zoe Brain said...

ariablue - because of the pictures, and the simple explanation of the PAIS grades.

A far better place to go for info for anyone interested in this issue is, well, any one of the groups you mentioned. I'll hyperlink them for easy access.

AISSG - AIS Support Group

OII (Organisation Intersex International) Australia

Intersexnews Blog

Sophia Seidelberg (OII)

And add one, a group I have some differences of opinion with, but who are good on this issue:
AISSG - Australia - a tadge transphobic, but improving with age.

Nat said...

The ONLY positive thing to come from this is that this is an opportunity to stand up and try to educate people while we have their attention.

Helen said...

Thanks Zoe for your wonderful blog. I crossposted a link at the thread on this topic at Larvatus Prodeo where "ignorance and malice are equally mixed", at least from some commenters.

But I would expect that she is getting a significant performamance advantage from the high testosterone level, just not as much as a male with the same level.

Lloyd, did you even read Zoe's post? "Unlike other women, she cannot get the full performance benefits of testosterone, since she's almost immune to the stuff."

Lloyd Flack said...

Helen,
There are other androgens besides testosterone. Failure of binding sites for testosteron need not mean failure to bind to say DHT. And androgens are having some effect, most obviously on the skeleton and on fat distribution. However I agree with Zoe that her musculature is high normal but because of the body fat distribution it looks like more. Yes I think she probably should be able to compete in wonen's events but it is not an open and shut case.

I was more concerned about some of the attitudes expressed here. I was appalled at the snobery towards anyone for whom competition in sport is important. While they are not important to me and I share the opinion that sport is more about fun and fitness I will call out this knocking of those for whom it is more. After all Miss Semenya has to share the attitudes that are being put down othwise she would not be able to compete at an international level whether her condition gives her a significant advantage or not. And I think that it was wrong that the other athlets were not even being considered.

Anonymous said...

Zoe , Caster is NOT ultra feminine ...nor is she "feminine"

Caster Semenya is very very MASCULINE.

Caster SHAVES her facial hair.

Caster was NEVER comfortable as a girl , always dressing as a boy. hell for 11 years "her" headmaster thought "she" was a HE !!!

If she was AIS it is very doubtful that "she" would present like she does.

You are barking up the wrong tree.

vic.

Zoe Brain said...

Vic - her behaviour would be typical for a woman with CAH - or PAIS-4 or 5.

Please have a look at the AIS Support Group website.

At the CAIS end of the spectrum the outward appearance is completely female (AIS Grades 6/7) and the sex of rearing is invariably female. In PAIS the outward genital appearance can lie anywhere from being almost completely female (Grade 5), through mixed male/female, to completely male (Grade 1); it has been suggested that slight androgen insensitivity might contribute to infertility in some otherwise normal men. Some babies with PAIS may be raised as males but many are re-assigned as female.

Grade 1 PAIS Male genitals, infertility

Grade 2 PAIS Male genitals but mildly 'under-masculinized', isolated hypospadias

Grade 3 PAIS Predominantly male genitals but more severely 'under-masculinized' (perineal hypospadias, small penis, cryptorchidism i.e. undescended testes, and/or bifid scrotum)

Grade 4 PAIS Ambiguous genitals, severely 'under-masculinized' (phallic structure that is indeterminate between a penis and a clitoris)

Grade 5 PAIS Essentially female genitals (including separate urethral and vaginal orifices, mild clitoromegaly i.e. enlarged clitoris)

Grade 6 PAIS Female genitals with pubic/underarm hair

Grade 7 CAIS Female genitals with little or no pubic/underam hair

Before puberty, individuals with Grade 6 or 7 are indistinguishable

Note however that in the study of Hannema et al (2004), 70% of 'CAIS' patients with substitution mutations in the androgen receptor ligand-binding domain had epididymides and vasa deferentia present. These structures develop from the primitive Wolffian ducts under the influence of androgens, once the testes have formed and started to make testosterone, and were in fact more developed than epididymides and vasa deferentia in 'normal' 16 to 20 week-old male fetuses. The researchers suggest that the combination of some slight tissue sensitivity to androgens together with the particularly high levels of testosterone seen in CAIS can stimulate Wolffian duct development/differentiation. They suggest that the classification of androgen insensitivity in such patients should be considered severe [PAIS] rather than complete [CAIS].


Right now, I couldn't rule out 5ARD or 17BHDD or a few other conditions too. Not Reifenstein or Kennedy syndrome though, they're excluded. But PAIS 5-6 seems most likely based on the incomplete and unreliable data we have.

All the gradations of PAIS are arbitrary anyway, individual cases may have symptoms typical of more than one grade.

e.g. my original diagnosis in 1985 was PAIS-1 to MAIS "undervirilised fertile male syndrome". With some skeletal features more typical of PAIS-2.

Not that I'm qualified in any way to give a diagnosis of any kind. I leave that to those with actual medical qualifications. And they wouldn't commit themselves to anything at all based on such poor evidence.

I'd be interested in what you think the range of possibilities is.

Anonymous said...

Zoe,
Caster has never "presented" as anything other than male....and a very masculine male at that.

There is no evidence at all that Caster identifies as female ...and plenty (from family, friends and teachers)to suggest she identifies as male.

There is only ONE issue at stake for the IAAF and for sports fans....that is the one of whether or not Caster qualifies to compete against Females.

Therefore to answer the question you posed re. the "range of possibilities" .....there IS only one ..If Caster wants to compete in IAAF events as a female then she must have her testosterone producing testes removed.

Any other issue is Casters personal business.

vic

Anonymous said...

Zoe ,
Just a further comment on this statement:

"She's an 18 year old girl from a backwoods African rural village who has given her all to become a world-class athlete"

Firstly , there are attempts to portray Caster as some innocent backwoods hick. Caster is far from that , she is an intelligent 18 year old University student. She would have been fully aware of the official complaints made by the Athletics authorities of at least 3 South African provinces during her running career.

Secondly , Casters extreme muscularity gives the lie to any claim that her body is not getting an advantage from the extra Testosterone being produced.

So what criterion do you use to describe her performance as "world class" ?

What has happened in this case is tantamount to cheating. Athletics SA KNEW Caster would not qualify to compete as a Female....yet they entered her anyway.

As yet of course we don't know what role the South African head coach played in this ...as we now know SA Coach Ekkart Arbeit was the chief doper of the East German womens team.

Do you think he would not have known about Casters condition ?

This is not an issue of Gender rights ...it an issue of cheating.

vic

Zoe Brain said...

Vic -
There is no evidence at all that Caster identifies as female ...and plenty (from family, friends and teachers)to suggest she identifies as male.

Apart from the headmaster who thought she was male initially... any evidence of that? Do you have a URL describing what "friends and family" have said? Or any of her teachers? Her parents have said the contrary, according to some reports.

Anonymous said...

Zoe,
Much has been reported about Casters early days and all you need to do is Google.

Here is one :

"And it is not the first time Semenya has faced confusion about her gender. It's said as she grew up, there were murmurings in her community about her gender -- the streets talk.

"She was always rough and played with the boys," the headmaster at her former school said in an interview. "She liked soccer and wore trousers to school. She never wore a dress. It was only in Grade 11 that I realised she was a girl."

Her cousin said she was often teased for looking like a boy."


So,it is quite possible that Caster identifies as male.Caster has said virtually nothing ...so we only have the opinions of family , friends and teachers to go on.

But the issue that should be in the public domain is not one of Casters intimate gender details.

It is a quite simple one , does Caster qualify to run in IAAF races against females.

The answer seem to be no.The IAAF has already refused permission for Caster to run in international events.

If you take the time to read the IAAF pdf document that you quoted from above you can clearly see what stage things are at.

Caster faces some major decisions ....maybe similar ones to those faced by Austrian downhill skier Erik Schinegger.

vic

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