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.

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?

Update on Life in General

My apologies - it's been ages since my last post. I suppose part of it is because my focus on this condition ebbs and flows. AIS is a part of my makeup, and has made me who I am today, but it's not the only thing. Just as we are all a sum of many parts, and arguably, more than just a sum of them.

I guess that was a convoluted way to say I've had other things on my mind these days. ;-)

I've been busy these days - with the job search (I've been unemployed for over a year now), and with a divorce. Yes, the ever-supportive husband I mentioned in previous posts has decided he is done with our relationship. (Those of you who know me personally but don't know I author this blog will likely now know who I am. And yes, this is me. Only I change a few details throughout for anonynmity! ;-))

I mention this as I wonder if my discovery of my AIS was a factor in him falling out of love and wanting to end things. Supportive friends insist that it's not, but I guess the insecurity in me causes me to ask the question. Especially since he brought it up in one of our breakup chats. He suggested I wasn't producing the right hormones or pheromones to keep him interested. He still insists that learning I am 46,xy has nothing to do with his feelings for me, but I do wonder. If the discovery did affect his feelings, I would be a little upset. I don't think there's anything male about me physically. Heck, I went for a huge portion of my adult life not knowing anything was amiss myself, and I live with me every day!

In other news, I've changed the comment settings on this blog so now when anyone comments, I will be notified by email immediately. Before, I would go weeks or months not knowing someone had left a comment or question. This should happen no more! Thanks for all your great comments, observations, questions and support!!