Wednesday, August 11, 2010

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.

Monday, August 9, 2010

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!