Outed At Work! - Part 2

In follow up to my last post where a colleague coincidentally came across my photo on the Androgen Insensitivity Syndrome Wikipedia page, I just wanted to mention that this has been no big deal.  I sent my colleague a short Facebook message (since we are Facebook friends, but don't really hang out at all except for an occasional group lunch in the corporate cafeteria) mentioning that I had heard he had found out, and was available to answer any questions he had.  His response was along the lines of "Meh... No big deal," and it's been dropped since then.

I've found that this condition is usually "no big deal" to most people who find out.  I think that some of us with AIS or other DSD/intersex conditions find it a much bigger deal than those people around us.  Not to downplay it for those of you for whom it is a big deal.  But as a friend of mine is fond of saying - it's simultaneously the biggest, most important, and the smallest, most trivial thing.  How much it matters really depends on where you are in your life and in dealing with it.  For me, it's made me who I am today in so many ways, but is one of the last things on my mind on a busy day balancing work, friends, family, and health in general.

First Openly Intersex Mayor

Hobsons Bay, Australia elected who is believed to be the world's first openly intersex mayor recently.  Tony Briffa was born with Androgen Insensitivity Syndrome, and identifies as both male and female.

http://www.huffingtonpost.com/2011/12/10/tony-briffa-intersex-mayor_n_1140840.html

I found this news really interesting for two reasons:  One, because I am glad to see an intersex person being elected to a very visible role.  And two, because this highlights the fact that not all people with AIS identify as female.  Some identify as male, others as male and female, and still others would choose neither gender.  This is something that I myself have forgotten at times.  Being a member of a support organization where most of the members identify as primarily female makes me forget about those who don't.  I have no real reliable data on the number of people with Mild AIS or Partial AIS, but I have heard anecdotally that they may very well outnumber those of us with the Complete version of the syndrome.

CAIS Privilege

Although this is a topic that's been on my mind for awhile, I have never really brought up because I sense it could be highly controversial, and might even make a few of you angry.

I have been thinking about the status that women with CAIS (Complete Androgen Insensitivity Syndrome) seem to have within the AIS / DSD and/or intersex "community" (if you can call it a community). As someone with CAIS, I will include myself in this category. I feel like we are the "darlings" of the medical world and the media to some extent. If you don't understand what I mean, please bear with me.

As someone with CAIS, though I am technically intersex, and neither wholly female nor male, I am much more easily accepted as female by the majority of society, by the medical community, and by some others with DSD (disorders of sex development). I fit the paradigm physically more so than many women with Partial AIS or another DSD. What's more, I happen to fit more within the paradigm of what is considered in some circles in society "conventionally" attractive for a woman. I am very feminine, and considered by many to be very attractive. I am straight. (Pretty much anyway. But that's a separate topic.) People will label me just a regular woman with a Y-chromosome. As if my karyotype and my internal testes were more of a fluke or an accident.

Women with other conditions, who were born with anatomy that doesn't so easily fit the paradigm, who might appear more masculine than the ideal feminine paradigm, or who might be attracted to just women or to both men and women - these women bear what I think is a lot more weight in the game. Society is less comfortable with them and their bodies and their identities. And to be frank, I think these women have a tougher time.

I'm not saying that women with CAIS have it easy. We've got plenty to deal with - infertility, fear of rejection by our often straight male partners, and more. Plus, the very idea that we can so easily "pass" as "typical" women, even with our clothes off creates a different type of tension: If no one ever has to know, or would know, do we tell them? Do we have an obligation to?

But many women with PAIS or other DSD never even have that choice. And from birth they are thrust into a world where an immediate surgery or other irrevocable decision might be made for them. And that's just the beginning really.

But what was the point of this post? Really just to get your feedback on this. I am so curious as to how others feel about this idea I have about "CAIS Privilege". Is it valid? Am I crazy? Do you agree or disagree?

Doctor's Response and a Planned Disclosure

I got my first response to my outreach letters a few days ago. From the head of urology at a hospital that treats children, and they are "ramping up" their expertise and services to children with DSD, so he said my letter came at the perfect time!

I am really looking forward to getting contacted the next time they have a patient or family who would like some peer support.

As for the amazing guy I mentioned a few posts previously - he and I have had three "dates" thus far and the next one is scheduled for Sunday. It has been nearly impossible to see each other given my being out of town for work, his being out of town for vacation, and even more trips planned coming up. Aside from that though, I am sensing a slowness on his part. And we are both really patiently and deliberately getting to know one another without rushing anything. I like this approach. A lot.

This guy is really unlike anyone I think I've ever met, and I find myself really treasuring our conversations. There has been absolutely zero physical contact, but due to the nature of our conversations and some email exchanges, I feel in some ways more intimate with him than I have felt with anyone for a very long time.

In this case I've chosen a somewhat phased approach to disclosure of having AIS.

On our third date, my being infertile came up. I had broached the subject in an earlier email where we discussed the pivotal "events" in our lives that had shaped us. He has shared some very heavy stuff with me already, so on date #3 I related the story of my surgery at 17 and the events leading up to it. He now knows exactly what I knew up until 2 1/2 - 3 years ago. I told him there was more to the story, but that I'd have to save the rest for another time given how short our last date had to be.

On Sunday most likely, I'll bring up the AIS. I'm half nervous. And half strangely not. If everything I've interpeted about this guy's character is true, it will be no big deal, and he will respect me more for having shared it with him, and for the positive things I have done with my new-found knowledge.

And if not? Well, I'll cross that bridge then.

His reaction to the infertility issue was surprise that it had really ever bugged anyone else, and reassurance that this wasn't an issue for him. I am crossing my fingers and hoping for an equally positive reaction to the next big "event" in my life where I learned the full truth of my diagnosis.

I'll keep you updated. Send good vibes.

Estradiol Up

As I mentioned, I'm now on .5MG more of Estradiol per day, and I'm taking it approximately half in the morning and half at night. That's 2.5 MG total. I am in my early 30s and weigh about 128lbs.

I might just be my imagination, or any number of other things going on, but I feel a bit moodier than usual. My skip-level manager today made some sort of remark about where I was sitting in a recent meeting. "Do you sit in the third row at church too?" he asked, and I felt so irritated that I wanted to snap, "I don't GO to church!" and see if I could catch him off guard. I've never liked the guy - and always felt he seemed fake, but that feeling is not characteristic of me on a typical day, and I don't think he meant any harm with the question.

At any rate, I wonder if my body is now processing more of the hormones as a result of the timing and the slight up in dosage.

Most of my friends on increased levels of estrogen - both my XX-female friends and my XY-female friends, always note an increase in breast size. That would be a very welcome effect for me, though I may already be at my maximum size given my thin frame and other genetic factors. I've definitely got a very feminine butt and hips. If I could be one cup size bigger on top though - fantastic! Alas, I wouldn't want that at the expense of putting on more weight. The latter is also an effect of increased estrogen. I think I'll be hitting the gym in the next hour or so.

I've been wondering about the effects that testosterone might have on me. Other women I know with complete AIS claim that taking testosterone helps with their energy levels and sex drive. That seems a bit strange, considering we are supposedly insensitive to testosterone, however science and medicine don't have the human body and mind completely figured out yet, so I guess there is a possibility there. I am lucky in that I have never had a problem with my sex drive, and it's definitely increased through my 20s and early 30s. Energy on the other hand, I think I could use more of that sometimes. Although that could probably easily be addressed by sleeping more and working less!

Brief Updates

I met an amazing guy very recently. If experience has taught me anything about blogging - even somewhat anonymously - and having a pretty open, candid dialogue about my having AIS with the new people in my life - it's that I should stop posting any potentially personally-identifiable details here so disaster does not ensue.

So I will say no more, other than I am excited to have met someone with such a great depth of character, who has had to grapple with a lot of unplanned events, as well as struggle with issues surrounding faith and personal identity. I am only just beginning to get to know this person so have not needed to "disclose" anything, but I am hopeful that he will appreciate my own recent revelations and see the parallels between his journey and mine. In the meantime, we will need to wait a bit to see what kind of role he might play in my life.

In other news - I got my medical records from my gynecologist of almost two decades past. They were not very revealing. They did not tell me anything I did not already know, and in some respects seemed a bit incomplete. They made reference to a letter from my surgeon (which I acquired separately). I wonder if they were selective in what they sent to me?

At any rate, I think I have everything I will ever receive now, and that is enough. I wrote and sent letters to both the gyno and the surgeon and made them aware of my knowledge of my condition and asked that they give my contact information to other women and families facing these circumstances. I also sent similar letters to some doctors in my current area. I have still not heard anything from anyone, but hope to get at least a response or two.

Letter to My Doctor

I've decided it's time for me to write a letter to the doctor who initially diagnosed me with AIS at the age of seventeen. This is an important step for many of us whom were either lied to, told half-truths, or told, "You are one of only a few people in the world with this, and you'll never meet another person like you," or the also-popular, shame-inducing "Don't tell anyone."

Although I did harbor some anger with my gynecologist for not telling me the truth, and having no plan to ever tell me the truth, and no plan to get me any sort of psychological care post-surgery, I believe that I've worked through that and am in a more positive place. I think instead about what effect I would like to have on her and on the world, and have written a letter which doesn't bring up past grievances, but instead focuses on the future. Here it is below. I would be curious to hear what people think. Her name removed to protect her privacy:

Dear Dr. XYZ:

I am a former patient of yours whom you last saw 17-18 years ago. I visited your office as a teen with primary amenorrhea. Although I do not remember all the details, I recount that I was told that I had a congenital abnormality that had affected my internal, female sex organs, and that if not operated on, would likely become cancerous. Months later in Omaha, I had what I believed to be a hysterectomy performed.

A few years ago, in my early 30s, I discovered the true details surrounding my diagnosis of Androgen Insensitivity Syndrome. Although I was initially shocked and upset to discover the reality of the situation, I have been able to quickly come to terms with the diagnosis. Learning the truth has resolved a lot of unanswered questions about my body, and past events, and in some ways given me greater peace than I had when I thought I was an unfortunate woman with a potentially cancerous deformity. I have also connected with an amazing group of women with AIS and related DSD (disorders of sex development), and am active with a group called the AIS-DSD Support Group for Women and Families.

I write to you for two reasons. First, to request that you and your colleagues who still practice in gynecology, urology, pediatrics and other fields, become more aware of these conditions and more current best-case practices for treatment (which involve full disclosure to the patient over time and as age-appropriate). There is a wonderful network of medical, psychological, and peer support throughout North America surrounding DSD. Second, to offer myself as a resource should anyone in the area be diagnosed with AIS, Sywer Syndrome, Congenital Adrenal Hyperplasia, or other DSD, and want to speak with someone who has lived a similar experience. I have no formal medical training myself, and of course would not offer medical advice. However, I and many others have found that peer support is a crucial piece in living happily with a DSD.

If you or any of your colleagues have met, or meet patients in the future with AIS, Swyer Syndrome, or other DSD, I am glad to offer my contact information to you, your colleagues, or to these patients or their families directly. I am happy to share my experience or relate experiences of friends and acquaintances of mine living with this and similar conditions. To discuss further, you may write to me at the above address, or contact me by phone or email.

Thank you for your time.

Sincerely,

XYZ

Quest for more Medical Records

In a recent post I believe I mentioned wanting to hunt down my remaining medical records, should they still exist. I've had mixed luck. The records from my hernia procedure at age two have already been destroyed. It took place in upstate New York, and New York state law only requires that records for a minor be kept until after the patient reaches the age of 18.

Still working on the records from my gynecologist when I was a teen. Although I have the hospital records which explicitly show that she and the surgeon lied to me, I only just a week ago requested the records from the gynecologist. I am nervous that they will be hidden or destroyed, as I hear is sometimes the case when patients with DSD (disorders of sex development) request them. I grew up in Nebraska, and according to Nebraska state law, the records must have been kept at least ten years, but in practice are often kept longer. Let's hope it's the latter. The last I checked, they had not been faxed yet to my new doctor's office.

Georgetown University has a useful reference on medical records, laws by state, and your rights under HIPAA. Have a look at http://hpi.georgetown.edu/privacy/records.html

And We're Back...

Seattle was brilliant.

Rarely do any of us have the opportunity to meet and reconnect with so many courageous and dynamic people in a single venue. This conference was one of those uncommon moments.

While in this year's story-telling session, and in a few informal group discussions, I found myself thinking about my daily life, and interactions with family, friends and co-workers - and about how superficial most of our conversations really are. In almost "third-grade book report" format, we recount the events of the past weekend or gossip about some trivial situation. But for four days, I had the pleasure of listening and talking about things that truly matter - that get at the roots of human experience, identity, joy and pain. I had more candid, honest and meaningful conversations than I have had for months.

It was both exhilarating and exhausting.

The Annual Conference!

There I was - surrounded by dozens of other women like me. All of us intersex, women with DSDs. Many of them with a "flavor" of AIS like me. Others with related conditions - Swyer's, Congenital Adrenal Hyperplasia, to name a few...

All this was at the annual conference of the AIS Support Group USA. All of us (100+ people total) comprised of women with DSDs, some of our family members, spouses, friends and other support, gathered for a wild weekend in Nashville in late July. I had been mentally "prepared" for the experience by a friend of mine in Denver, who also has AIS. She's a veteran of the conferences and of the group, and told me to prepare for a life-changing experience.

So how did it go? Quite simply, it was great. It put real faces on all the women I've connected with via phone and online. It humanized the conditions for me. Made them more real and also less a stigma. For the most part, I've made peace very quickly with having AIS. I'm not 100% open yet, but have disclosed to many people -- friends, family, and some near-strangers in the right context. What was great about the experience of the conference though, was meeting so many other women with such a similar story and experiences. Women with whom there is no need to explain some things, like infertility or surgeries or why I don't keep tampons in my house. There were some really amazing women there who have stories far more difficult than mine, but who have managed to come out on top of it all.

Then there are the women who struggle daily. Women for whom the condition almost seems to define them. It seems to weigh on them heavily, and prevent them from going after the things they really want in life - be it love or romance or confidence or success. I'm not one to judge, but I do feel like they have more choice and more power than they realize. And I feel like it's part of my mission in this life to help them with that. I'm no model for personal empowerment, but I do believe I've become a better person because of everything that's happened the past few years. My discovery of AIS, my divorce, my job struggles. And I think all of us - myself included - can use a helping hand from time to time...

All of that aside, I had a great time. A lot of laughing and joking and getting to know one another. Some very intense, heavy, emotional time as well. In all a busy, well-rounded, and very "worth it" weekend.

Passers-by to this blog might wonder about the makeup of this crowd of intersex folk looked like. Honestly, as a whole you would not have been able to tell us apart from an informal gathering at a business convention of "typical" XX women. I found myself approached by a few mothers of girls with DSDs, and I at first assumed that they also had AIS, or Swyer's, or some other condition. It was just that difficult to separate the "normals" from the "extraordinaries"....

My big takeaway? I'd strongly suggest anyone out there with a DSD or intersex condition to reach out and meet others with a similar condition. You are NOT alone, regardless of how "rare" your condition is or what you've been told by doctors or parents or other professionals. There are more of us than you think, and we are EVERYWHERE. Across the board, everyone I spoke with seemed to agree that meeting other women with AIS was the most important step in their healing and acceptance process, and I definitely agree.

Revision of AIS on Wikipedia

Several women with AIS and related conditions and I made a major revision to the Wikipedia page for Androgen Insensitivity Syndrome last week.

Previously, a photo of a man with a "micropenis" was the only image shown. He was standing there naked, with a tanline around the watch area visible, and a black box obscuring his face. Classic medical photo "protecting" the subject's identity but inherently also casting shame on the condition. Furthermore, the vast majority of individuals affected with AIS look more female than male and identify as such. This photo was clearly not an accurate representation of the syndrome.

A friend with AIS removed the photo and replaced it with our own: A beautiful color photo of a dozen plus women with AIS and other similar DSDs, all fully clothed and smiling. Check it out on the Wikipedia page under the heading "Variations produced by androgen insensitivity".

This photo was taken at a conference held a few weekends ago for women with AIS and related conditions (Swyer's Syndrome, CAH, and others). I of course was in attendance. It was a great weekend and I will talk more about it when I have time. For now though, the workday is calling my name!

We Want to Hear YOUR Stories

I'd love to have a few "guest bloggers" post to this blog. So, those of you who have AIS or perhaps a related condition, if you have something you'd like to say, please leave me a comment, or email zoech4ng@yahoomail.com. I would definitely like to hear from you, and I'm sure everyone else would too.

You can remain anonymous as you like. You can tell any story you like, or talk about any topic directly or tangentially related to living with AIS or any other DSD/intersex issue. Email me your story and I will post them here, along with whatever type of credit you like. If you prefer to use a pseudonym, that's totally acceptable too.

Looking forward to hearing from several of you I hope!!

Zoe

Disclosing at Work

Have any of you had any experience disclosing your AIS or other intersex status to co-workers or managers?

At the moment, I have no one to disclose to, because I am unemployed and looking for work. However, I have had the opportunity to disclose this information in job interviews. I have not yet, for fear that I might be discriminated against, but it's something I have been thinking about should the right occasion arise.

Let's do a thought experiment: Your prospective employer asks you an interview question like, "What is the biggest obstacle you've ever had to overcome?". Now, if they want the truth, maybe being intersex would be one of the bigger obstacles in one's life. Although, we don't usually talk about our genitals or our chromosomes in those situations, do we?

Or suppose you are being interviewed for a writing job. Or in my case, a web marketing job. The prospective manager wants to know I am fully web savvy and have worked a lot with social media before. Some of my blogs, like this one, would be the perfect thing to show. Yet again, there is a risk there that this type of material would be found inappropriate at this stage in the professional game. Not to mention the bias or prejudice you might encounter when you are too frank, or too genuine.

As I have mentioned before, I have thought about totally "outing" myself in some public forum. And I probably will one day. My real name is so uncommon that there is probably only one of me out there online, and it would not be difficult for me to choose what I'd like people to know about me through a single Google search.

Any thoughts on the matter?

AIS in Chinese

I am pleased to say that I figured out how to say/write "Androgen Insensitivity Syndrome" in Chinese:

"雄激素不敏感综合征"

This might not make a hill of difference to anyone reading, but as a Chinese-American who has not been able to yet become fully proficient in her parent's mother tongue, I was pretty pleased with myself for managing to figure it out based on Google and a Chinese dictionary.

I googled the term and there are a good number of hits, though I can't really read more than 10% of it. ;-) Wish I could, because I'd love to see what is going on in Chinese media and medicine about the condition. Anyone out there know of how the condition is perceived in the non-Western world?

Eden Atwood's "The Opposite of Secret"

From the foreward to singer Eden Atwood's newly published online memoir, The Opposite of Secret: "Eden Atwood led a dramatic, exciting, tumultuous, fascinating life – then she turned 20."

Yes, the sassy, talented and beautiful Atwood (who just happens to have AIS as well), is publishing her book online, one chapter at a time. Her writing style is compelling, and her story one that pulls you in from the opening paragraphs. Read about Atwood's struggles with family, growing up, and of course - AIS:

http://oppositeofsecret.blogspot.com

You can also check out a video interview with this remarkable woman here:

Alleged AIS Man (Evil Eunuchs) on CSI Miami

A recent episode of CSI Miami titled "Delko for Defense" continues the trend of bizarre and inaccurate portrayals of intersex individuals on television. I suppose we shouldn't be surprised. After all, every ethnic, cultural, and social minority has had its time in the evil villain spotlight. Why should intersex people be any different, right?

If you haven't seen the episode and don't mind wasting a half hour, the link to the show is here:

http://www.dailyworldbuzz.com/csi-miami-season-8-episode-11-delko-for-the-defense/6751/

If you don't care to watch, want to see my analysis, and don't mind spoilers, read on:

In sum, a typical, mild-mannered looking, boy-next-door type is chased down after the murder of a famous actress/model in her Miami home. Plentiful evidence clearly points to the man's guilt, until it is discovered by the coroner that the woman had been raped, sometime before her death. The suspect denies his involvement in the murder but refuses to submit to DNA tests, admitting he is hiding something - something so horrible that he rather go to prison than have the tests clear him of all guilt.

Just what is that horrible secret? A forced blood and DNA test clears him of the rape, but reveals the man is androgen insensitive. A forced physical examination in the men's room next reveals he doesn't have the right equipment for raping a woman either. We're led to believe that not only is this man unusually NOT well endowed... He's not really endowed at all. We're not told whether his genitals look more like a clitoris, but our imaginations are instead left to run wild.

Fast forward a bit, and the investigators learn of another woman who had been forced to an equally horrific and eerily similar ordeal to the dead woman's - but survived. (Apparently the killer had forced both of the women to cook him breakfast after the rape--why it is never explained.) The woman had survived narrowly escapes death because some kids come to the door selling cookies or something similar and the killer runs off. Interviewing the surviving woman, investigators realize that this is a tag team of killers. At least two were involved.

Fast forward yet again, they find the rapist, confirm it's his DNA that has been left on the dead woman's body, and confirm a close connection between him and the original suspect. After another very light interrogation of the original suspect, we discover he did kill the beautiful actress. He hastily admits to teaming up with the other psycho (who happens to be a sociopathic computer hacker/tech support nerd). The "real" man would do the raping. And our AIS man -- the "eunuch" the killing. It's poetry really... (sarcasm)

When asked why he would do such a thing, we discover the killer's horrific motive: It was the only way he could really be close with these women. Or something like that. Denied his masculinity, and denied the ability to seek sexual gratification with these ladies by lack of the "proper" anatomy, it seems the natural next step is murder.

(Sigh.)

So many things wrong with this episode. Don't get me wrong - it was a good laugh. Kind of like one long joke. And the killer's last line - his motive - was like the punchline.

If we want to deconstruct this all a bit though, I am having some trouble believing that the actor portraying the AIS individual could have had AIS. Though there are various grades of AIS... from a very mild form ("1" on a scale of "1 to 7") to complete AIS (a "7"), I don't see where this person would have fit. With a typical masculine face and facial hair, one would guess on the mild end of the spectrum -- yet this would have made his genitals typically male, or just a bit smaller than usual I believe. If he had been extremely androgen insensitive, which is what one would conclude on lack of male-looking equipment, this would have likely come with a significantly more feminine face and build. Heck - most complete AISers are indistinguishable from typical women.

I am not a doctor, but I would conclude that said individual did not have AIS at all, but something completely different.

Medicine and biology aside, I am also bugged by the continuation of themes portraying intersex people, or people who don't conform to gender stereotypes, as evil. You can go back to black and white films to find plenty of evil eunuchs (on a side note, usually Chinese). And movies from the past few decades are filled with lots of gay villains. Does the public really eat these up so much that this bizarre theme continues?

Furthermore, I think the idea that this "evil eunuch" has in his head that he cannot be with a woman sexually because he lacks the right goods down there - says a LOT about our society and our assumptions that one needs a traditional plug and a socket, a male cable and a female port, a ... well you get the picture, for sexual gratification. Get with it people!!!
Perhaps I will never understand...

Phillips is "Breaking Down the Myth of Two Sexes"

Following is a link to one of the better articles on AIS and intersex that I've seen. From the Vancouver Sun. (Thanks, Canada! And THANK YOU to Nicky Phillips for being open about her condition and wanting to dispel the myths and stigma against it.)

http://www.vancouversun.com/health/Breaking+down+myth+sexes/2011849/story.html

The Myth of the AIS "Glamazons"

Something is bugging me about the popular press portrayal of women with AIS and/or CAIS. We're said to all look alike: tall, striking looks, perfect skin, beautiful hair, and a body that just won't stop...

Every day there's some blogger speculating about another super model or actress who must have AIS... "She totally must have it! Look how tall and curvy she is. That can't be 'natural'."

And just as often the speculation is followed by some snide remarks... "I'd hit that!" one guy will exclaim. "Huhuhhuh... she's a man!" pipes in another. "Well she certainly looks a little man-like if you look closely," comes another comment.

Beavis and Butthead's comments aside, everyone seems to be latching on to this idea that we all look the same. When in reality, there is much variety among the CAIS and partial AIS set as there is among XX women. Though one might be able to say we are taller than average as a whole, I'd say that's where the similarities end.

We are short, tall and average height. We are curvy, plump, slight, and slim. We are cute girl-next-door types, gorgeous bombshells, and Plain Janes. We are gay, straight, and bisexual. Some of us girly, others more rugged. Some of us are athletes. Some of us models. Some of us teachers, executives, postal workers, secretaries, or stay-at-home moms.

We are in virtually all ways but genetic, just like all the other women you see every day. You may have even met some of us and never even known it.

So stop the hunt--please. You're really not getting anywhere...

Caster Semenya and the Rules of the Gender Game

If you've been watching, or reading, or listening to the news lately, it's likely you've heard of Caster Semenya - probably less for her extraordinary athletic performance in the 800-meter race and more for the controversy surrounding her gender.

The press has been mostly sensationalistic because it seems everyone loves to jump onto a story about the latest medical "oddity". Finally came across a NYTimes article today which gives a nod to the difficulties Semenya must be facing now and in the future as a result of this; in addition to considering the difficulty of defining gender itself.

http://www.nytimes.com/2009/08/22/sports/22runner.html

"Where's the rulebook?" it asks.

Androgen insensitivity syndrome is mentioned in the article. Being androgen insensitive myself, I am an example of how it's not chromosomes that can define someone's gender.

Though the sporting world probably wishes it were more clear-cut, I don't think they'll find easy answers to gender definitions anywhere -- not in the genitals, not in the pitch of one's voice or the cut of one's jaw.

The Times article makes a great point in particular with the following:

Sure, in certain sports, a woman with naturally high levels of androgens has an advantage. But is it an unfair advantage? I don’t think so. Some men naturally have higher levels of androgens than other men. Is that unfair?

Consider an analogy: Men on average are taller than women. But do we stop women from competing if a male-typical height gives them an advantage over shorter women? Can we imagine a Michele Phelps or a Patricia Ewing being told, “You’re too tall to compete as a woman?” So why would we want to tell some women, “You naturally have too high a level of androgens to compete as a woman?” There seems to be nothing wrong with this kind of natural advantage.

Sports officials have claimed the genetic tests on Semenya will take weeks due to their complexity. In my opinion, it's not the tests that will take weeks--those will take days. It's the ensuing debate over the results and figuring out what comes next which will take the real time.

Though I hate for Semenya or any individual to be placed in the spotlight amidst such controversy, on the positive side I think this whole issue is forcing a more open dialogue around a subject which continues to be taboo.

Folks who are intersex, or who just don't neatly fit our definitions of the binary male/female condition, have been around as long as human history, and it's a bit sad that we haven't wholly accepted them.

My AIS Story - Part 8

When I had come to terms with my discovered diagnosis and learned all I could about Androgen Insensitivity Syndrome, I had the talk with my husband. When I began with the discovery of my records, he had a worried, nervous look on his face. It probably didn't help that I was crying.

When I finished my "speech" about how I may have been "meant" to be a boy originally, but developed as a girl, a girl with internal, useless testes, and a Y-chromosome, he asked if this would affect my health in any way in the future. When I replied no, he breathed a sigh of relief.

He had thought I was going to tell him I would have to undergo yet another surgery, or would get cancer or something just as bad. This XY discovery, even the undescended testes. These things didn't matter. To him, I was a woman, and had always been a woman. I had always been honest with him. I was the same person he het met several years before. What a relief.

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After "coming out" to my husband, I talked to my mother on the phone about my discovery. I think she sensed what it was about immediately, when I told her I had found something disturbing in my old medical records.

I still don't think she knew the full extent of my condition. I think it was one part the doctors explaining things in terms she didn't quite understand. And one part denial, and worry more for my overall health and well-being to get caught up in asking the doctors lots of questions or for clarification of words like "gonads".

I will never know for certain what was said and wasn't said in that doctor's office or in the hospital that day, and though it still does bother me - to learn I'd been deceived, to learn that something was taken from me (whether I wanted it or not) without my knowing the real truth about what it was - I've come to peace with it to a large extent.

Ethics in medicine, ethics in the world, are always changing - and hopefully for the best interest of the patient. Back in the early 90s and before, the world was different. To be born intersexed in some way, to fall in between, was horrible and shameful. In a way many can't imagine now, I think that the doctors at that time thought they were doing what was best. It may have not always been the "right" thing but I think there are few times in life when things are so clearly black and white, right or wrong. This doesn't keep me from feeling hurt or angry, but it does help me to understand.

I think often about people with varying degrees of AIS. I feel extremely lucky in a way to have been born with the complete version, CAIS, because it meant I was born completely and unambiguously female on the outside. I think it would have been harder to fall much more in between. There would have been many more questions, and quite possibly then in the 1970s, a decision made for me about my gender which I would later not have been able to come to terms with.

I guess I feel lucky to have AIS overall, because it made me who I am today. It made me a woman. Social equity issues aside, I have never desired to be a man. Being a woman has afforded me a greater range of freedom to express myself than I think a lot of men feel they have. I can be as tough as nails in one situation, and cry like crazy over another, and it's still ok. Though the same should apply for everyone of course, man or woman.

Besides - my Mom had three healthy boys after me. I think that's more than enough men in the family. :)