New Blog: Swyer Sister

Came across a new and fantastic blog written by a lovely Swyer Sister.  I am so excited to read her updates as she continues her story and thoughts:

http://swyersister.tumblr.com/

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.

Outed at Work!

I was out-ed at work today!

Sort of. :)

I met up with an old co-worker for lunch today.  Had a frozen daiquiri to decompress after what's been a pretty crappy few weeks in the office.  When I returned to my computer, ever so slightly, pleasantly buzzed, a co-worker (who knows about me having AIS) pinged me quickly over Communicator.

"I just sent you a Facebook message because I thought you'd gone home for the day."

I checked my messages.  Apparently one of our co-workers was reading a post on a forum about a female athlete who might have AIS.  There was a link to a page about AIS, where I happen to be pictured, and he came across it.  What a crazy coincidence!

She wanted to let me know he had asked if it were me in the photo.  She confirmed it was.  They didn't talk more about it apparently.  It doesn't bother me he came across it.  Of course, if I had wanted to keep this a secret forever, I never would have agreed to inclusion in the photo.  But it did come as a big surprise...

I wonder if he'll tell others we work with?  Probably about 10 people already know.  It should be interesting to see if the fact spreads...

2012 Annual Conference of the AIS-DSD Support Group

Although it doesn't seem like it's been six+ months since the last one, the next Annual Conference of the AIS-DSD Support Group for Women & Families will be here before we know it.  In Oklahoma City, June 21-24, several dozen women, teens and children with AIS, Swyer Syndrome, CAH, and other conditions, along families in tow, will gather once again for what will surely be an amazing few days.

Conference page:
http://www.aisdsd.org/2012-annual-conference/

For those of you with one of these or a related condition who have not been to a conference, I strongly urge you to go.  It will be a jam-packed few days of education and support.  And it's generally a TON of fun to meet other people with similar life experiences and challenges and exchange "war stories" or just laugh over a few drinks or some dancing.

If the thought terrifies you, COME ANYWAY!  None of us bite.  You can stick with me and I'll show you the ropes.

Hope to see you there.  Information on the above link will likely evolve in the coming months.

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.

The Results of Disclosure

So... the guy I mentioned a few posts ago has become a bigger part of my life than I expected.  Between then and now, I disclosed to him about my having AIS, before things got too intimate.  He was incredibly cool about it, and continues to amaze me the more I get to know him.  He is truly a remarkable person.

I've decided to refrain from posting much about my personal life outside of AIS, here on the blog.  Not because I am too sensitive about my personal life, but because many of the readers here know who I am in real life, and I am not sure I am wholly comfortable telling all of them the intimate details of my daily life. :)  Rest assured though, that I am actually NOT closeted about having AIS.  Though I do use a pen name here, I find it useful to separate my persona for other reasons not related to being X,Y or intersex.

But back to my disclosure to this amazing person.  Not only has this given me hope for myself in meeting someone really, really wonderful...  This supports the strong belief I have that disclosure is more often than not a positive thing, and that for those of you who fear to tell a potential boyfriend/girlfriend or friend about this portion of your life, more often than not, people are cooler than you might imagine about it.

The fear of disclosure, and the feelings that I have harbored over not telling someone have always been worse than the consequences of actually just "coming out" and telling them.

Best of luck to you all in disclosing as well when the time is right for you.

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?