Thursday, 12 February 2009

A Human Being

An Intersexed woman, who is transitioning. Triply Intersexed in fact, mosaic male/female, and 45x (Turner Syndrome female) chromosomes, and with (masculinising) Congenital Adrenal Hyperplasia. As unusual as I am - though at least in her case, the syndromes are all well understood, even if the combination is improbable. One of the rare 1 in a million "True Hermaphrodites" with both ovarian and testicular tissue. The ones who are always described as "extremely rare" or whose "numbers are so negligible they may as well not exist".

But regardless of what involuntary surgery has done to her in the past, and what voluntary treatment will do to her in the future, she was always a woman ever since she was a little girl. Peering past the external facade and into the soul is a relatively easy trick to pick up, once you know how. You can do it even by viewing a few minutes of low-resolution video, once you know what to look for.

The glandular problems can cause our weights to become unstable. The mixed hormones can also cause our skeletons to be abnormal, too thickset for female, but just as anomalous for male too. The 5 O'clock shadow is particularly distressing for those of us who are women, but fortunately, agonising electrolysis and laser therapy can help there.

This is what we look like. This is who we are. We exist, though many Religious groups like to pretend that we don't, as by the tenets of their faith, we can't. Many others like to pretend that there's only a handful of us worldwide, rather than many millions, with tens of thousands of the more obvious cases in the USA alone. About 5 million if you take the most inclusive definition, about 50,000 if you take the most restrictive.

Not many transition, but some do. Some naturally - that's usually from a female to a male appearance - and some through medical treatment. Some of us feel the need to change our body forms to become less anomalous, to make mind and body align more closely. Many have no need to, with minds and bodies fitting neither the definitions of male nor female very well.

The point is - it's our decision. Not Society's. Not our parents. Not well-meaning medics. Not a Church's. To identify as men, or as women, or as neither, or as both. The anomalous biology that makes us so different, that is the root cause of our persecution, gives us this right. A God-given right, for those who believe.

In her case, and in mine, we are women with an unusual medical condition. But one size does not fit all, and those of us who are outside the gender binary, rather than within it, deserve just as much respect as do we whose minds - if not bodies - fit snugly and seamlessly into the conventional model.


Anonymous said...

Just ran across this very interesting blog from my Google news round up for "Turner syndrome." My daughter has a mosaic form with 45X, and 45x46y (iso-dicentric) chromosomes floating around. She is all girl, biologically and gender-identity wise. I feel lucky that things are simple for her. In our case we didn't know her karyotype until she was 10, and there was absolutely no doubt, despite what her chromosomes said, and no one suggested otherwise.

I sympathize with the folks that things didn't turn out so clearly for. As a parent I would want to do the right thing, but it seems like it may take a few years to determine which way a child will ultimately identify. And the first thing people want to know about a new baby is "is it a girl or a boy." Any recommendations?

TS Mom

Anonymous said...

Zoe, thanks for posting this video of a very beautiful and unique woman!

Anonymous said...

Just a quick thanks for your blog, I discovered it during the blog awards and I've been glued to it ever since. Fascinating stuff. I myself am rampantly female in appearance but have considered myself alternatively female and male since I was a very small child. I can cite many psychological reasons for this but I do suspect that there is a physical/hormonal/biological/neuro basis as well - I do have a particularly male brain in many ways despite my female appearance. I had an intersex friend in high school and I'm loving your exposition on the subject. Cheers, GenderSwapper.

Zoe Brain said...

Hi TS Mom.

Thank goodness your daughter has parents like you. Many children aren't so lucky.

As regards recommendations - the best thing to do seems to be to raise the child as the gender they seem most suited for. Initially, that will be based on their somatic appearance, but parents should be aware that the child can - not necessarily will - exhibit gender-typical behaviour for their actual gender as early as age 2, and nearly always before age 12.

So they should be prepared to adjust the gender of rearing to be in accord with the actual gender.

As regards surgery, hold off. Only surgery to relieve physical pain, to ensure functionality regarding waste elimination, and to remove an *immediate* (not long term) cancer threat should be considered. Once the child makes their gender known, then give all support for whatever medical treatment is necessary, and keep the child informed regarding fertility and other considerations.

Finally, let them know that they're not alone, and not even that unusual. Many people have similar conditions, and some are quite well known in their chosen fields, even if their private medical anomalies are not publicised. A few even blog about them though :)

Finding an endocrinologist expert in the area is essential, and patient support groups can help there. Many in the medical profession don't know too much about it, and some aren't aware of the limitations of their knowledge. You really need to see a specialist who does know more than they do.

Some sites you may find useful, if you haven't already seen them:

Bodies Like Ours Forums.
Intersections Cafe
xyTurners you probably already know about.
Turner Syndrome Society

Yahoo Answers about Famous People with Turner Syndrome

If you'd care to e-mail me giving your approximate location - country, state - then I may be able to find a local chapter in your area.

Having a soma, a bodily appearance, which matches the actual gender really simplifies matters. As does having ID documentation. More than half the problems most have are not from the medical side - though those problems are hard enough - but the legal side. The only jurisdiction you may find problems with is Kansas.

As an aside - my own peculiar (and idiopathic) condition is illustrated in this post. The relatively simple genetic tests I've had so far have been unable to find the cause, but I have hopes. It's not actually a big part of my life though, I'm too busy living, parenting, and doing my PhD!

Zoe Brain said...

Oh gosh, nearly forgot! Too busy giving the support groups that I didn't include the medical stuff.

PEDIATRICS Vol. 111 No. 3 March 2003, pp. 692-702 CLINICAL REPORT
Health Supervision for Children With Turner Syndrome.

This is good as a checklist to make sure everything that should be looked at, has been. Or so I'm told.

NICHD (National Institute for Child Health and Development) site on Turner Syndrome.
They sometimes have studies your daughter may wish to take part in. One of the great gifts we have is that we can contribute to the total of human knowledge, and help others both like us and unlike us, just by being ourselves. Like those with rare blood types, we have an opportunity to do more than most are able to. (Of course I'm a geek-girl, and not everyone thinks that way)

Hugs to you and your daughter!

Anonymous said...

I don't want to interrupt the conversation, Just a thought here:

while Christianity has gender roles, there is no tenet of it that requires gender be perfectly assigned every time- after all, ultimately gender is defined by the flesh in a fallen world and could therefor get "broken"... just as toes and vertebrae and brain cells get mis-assigned, so could gender.

Christianity posits no difference (as far as I can tell) along gender lines at the level of the "soul" or eternal reality, and in Genesis the first Man and Woman are made from the same flesh; a more graphic expression of unity and continuity across gender within humanity can hardly be imagined.