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?

Disclosing to Acquaintances

To date, I've "come out" about my AIS to a few dozen people. Reactions have ranged from very positive to pretty indifferent. None have really proven negative. Of course, there are segments of people I am intentionally avoiding (for now). High school classmates from my small, homogenous, Midwestern town for starters. Certain extended family members who I don't feel need to know just now.

I have told a few near-strangers recently. Not because I feel the need to disclose this information to everyone, but because the nonprofit I am a part of (an AIS support group) somehow came up in the context of a conversation. One of these near-strangers, who I had met at a networking event once before, and who I ran into coincidentally at a coffee shop weeks later, seemed pretty taken aback at first. I never would have told him, but he had asked what nonprofit group I was trying to help out, so I thought, "Why not?" and just blurted it out.

He seemed a bit shocked, and I could see him almost unconsciously scanning my face and body before saying, "Well, you could never tell by looking at you!" I was a bit taken aback by that myself for some reason, but then realized, he wasn't saying anything negative. He was probably trying to be somewhat positive. And what's more, he was processing some very unexpected news - which you certainly don't hear every day. And I was certainly nervous, just throwing out all the cards on the table like that to someone I barely knew.

He found the condition interesting, and asked a few follow-up questions. "Is it like Fragile X?" he asked. "Not exactly," I answered. Though I didn't really know what Fragile X was. "Though it is a trait sometimes passed through the X-chromosome. Though sometimes, like in my case, it seems to be spontaneous."

He seemed to want to know more, so I explained what I could about the condition, and how I had only just found out, having been lied to as a teenager. He was sympathetic, and also intrigued. I offered to send him some URLs to read up more on the condition. And he later did, asking one or two follow-up questions.

His reaction was interesting because it was the first time I've really seen someone processing the information in this way. Really wanting to know more and understand it. I wonder if us not knowing each other well gave him more freedom to look at it from a more scientific angle.

At any rate, the experience, while definitely positive, made me think more about ways to disclose this information to people. As well as the variation in reactions I could get - some that might feel negative. I think it's important for those of us who are intersex to realize that to some people this is big, confusing news, and their reactions are going to vary - possibly widely - and we won't always like them.

Rather than fear their reactions, or react in a knee-jerk way, perhaps it is our responsibility to be more informed and more forgiving. Sure, we don't "owe" anyone anything, but only compassion and understanding can breed compassion and understanding. Perhaps we as intersex folks have to be the bigger people.

What about you? How have you disclosed your intersex status? What reactions have you gotten? And in turn, how did you react?

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!!

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...