Inter/Act

From across the pond Inter/Act brings you Imogen: Uniting the AIS Kingdom!

(Due to Tumblr format restrictions Inter/Act has published Imogen: Uniting the AIS Kingdom on AIC’s website.)

Inter/Act’s Second Wave Interview Series, Vol. 2: Shana in conversation with Tony Briffa, Mayor of Hobsons Bay (Melbourne, Australia). Mr. Briffa is the world’s first openly intersex mayor. 

Shana: You recently gained widespread notoriety for being the world’s first openly intersex mayor. What made you decide to first run for public office, and how did your intersex condition play a part in that decision? Did you expect that there would be as much international press about it as there has been? How has that experience been for you?

Mayor Briffa: I stood for public office because I know politics is a great way to make a difference and contribute to the community. I’ve always had an interest in history, politics and human rights, and being intersex - along with my experiences as a result of the clinical management of being intersex as a child - contributed to making me a strong advocate.  

I didn’t expect the global media attention but I am glad my election as mayor has helped raise awareness of intersex issues. The experience has been humbling because I’ve received so much lovely emails of support from all over the world.

Shana: How do you experience your gender in relation to your intersex condition? Has this changed over your life? Do you ever get responses from the transgender community? …

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@Inter_ActYouth

I was born with what’s now called Partial Androgen Insensitivity Syndrome (PAIS). That means that I, like women with CAIS (Complete Androgen Insensitivity Syndrome), have XY chromosomes and was born with internal testes. 

Unlike women with CAIS, however, people with PAIS are not generally born with genitals that look completely “female.” This is because the androgens (testosterone) that are produced in fetuses’ bodies, which do nothing in those with CAIS, do cause PAIS kids to virilize resulting in so-called “ambiguous” genitalia at birth.

When I was born, as it had been for several decades prior, the standard “treatment” for such cases was to operate, and “normalize” the genitalia’s appearance. Surgical techniques had certainly become more sophisticated as technologies improved, but the general idea was the same: This child’s body does not fit into the narrow classification boxes, this inescapable categorization that defines virtually everything about someone in our society. We must fix it …

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Pidgeon

This is embarrassing to admit, but for as long as I can remember I wanted to be just like everyone else. My grandma noticed this about me from an early age. I can hear her now as if she were next to me asking “Why do you want to be like everyone else!?”

She didn’t understand. I didn’t want babushka dolls for my birthday. I didn’t want my hairy arms and crooked teeth and crazy curly/wavy/frizzy hair. I wanted to eat foods other kids ate, wear things other kids wore, and look like other kids. I wanted to fit in!

In 5th grade my family moved from the city to a town that lay just along the edge of the city. It was a huge adjustment. My desire to be like everyone else kicked in to overdrive in this new, mostly white, middle class town. The girls were all so cool and beautiful. Their moms signed them up for cheerleading and as a form of recreation dropped them off at the mall with spending money.

There were only boys on my block in the old neighborhood, and we played sports in the alley all day and night for fun. While I was adjusting to my new neighborhood, school and people everyone else my age was adjusting to their new surge of hormones. Everyone except for me.

The question I feared most: “Did you get your period?”

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Monica

I can understand why they did it.

My doctors had choices to make and they did what they felt was best. When push came to shove and they were faced with the unknown, executive decision-making fell in their court. That doesn’t make it right nor does it make their point of view clear. So what is that viewpoint? Why is a black-and-white answer for a physician such a gray-scale answer for the patient? I’ll give you a possible explanation: emotions.

While I am not a psychoanalyst, I would argue emotions, by definition, can be irrational.  They are too closely linked to mood, temperament and personality to not have an effect on highly charged, stressful situations. The disconnect between the emotionally-shocked patient and the scientifically rational doctor may be one of the key issues in the doctor vs. patient feud that is all too common in the world of intersexuality.

Admittedly, my position is a curious one.  As an intersex person with 17-beta-hydroxysteroid dehydrogenase deficiency (17β-HSD3-Deficiency) I have undergone numerous surgeries to “normalize” my physical features. How on earth can I sit here and say that I understand the position of my past physicians?

It’s not that I possess an overly forgiving or unemotional personality, nor is it a lack of reflection on my situation and how I’ve been treated. Rather it is the fact that I’m entering my clinical year of veterinary school, and as such have been trained in the medical field…

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Sarah

There is no “Intersex” option to click on an online dating profile. So when I filled out my eHarmony questionnaire, I left out that part of my life; and when it asked me whether I wanted kids I wrote “Maybe,” which is true.

I kind of felt like I was creating an alter ego, someone who didn’t have to worry about when to reveal the truth to someone I was dating.

My friend Jack, who encouraged me to start dating online, is pretty adamant in his opinion on my AIS. “You never need to tell anyone, Sarah,” he says in a tone that almost screams “Duh!” “It’s none of their business, and no one can tell anyway.”

He has a point. Having a DSD (difference of sex development) is not a terminal or life-threatening condition. There are no fundraisers or celebrity cheerleaders to educate the public about CAH or PAIS, and most people have no idea that people like us exist, although this is beginning to change.

Unless I choose to tell someone, they will most likely never find out about my DSD or my chromosomes. But as much as I respect my friend’s opinion he doesn’t really get the whole picture…

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Lexye

The most important steps are the ones we take together.

I remember the day when I was diagnosed with complete AIS (CAIS). I was 16 years old, and I remember speaking with my doctor as he was doing my exam. He said to me, “I can’t find your uterus, so we will do some ultrasounds.” 

I was cool with it…after all, he just couldn’t find my uterus. It didn’t phase me because I had never had any type of surgery, and I knew that my uterus hadn’t gone anywhere. 

As I went through my ultrasounds with an incredibly full bladder, I remember constantly probing the doctor and technician with questions:

“What is that?”

“Is that my ovary?”

“What does that mean?”

They were patient with me as I asked the questions and responded to me in a way that I could understand. They provided an environment that encouraged my questions.

“That might be a piece of bowel or intestine.”

“We aren’t sure—perhaps.”

“We aren’t sure yet, but it looks like there isn’t a uterus here.”

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Lucy White

I am a girl with CAIS. I am a girl who has Complete Androgen Insensitivity Syndrome.  I am a girl.  My family found out at an early age that I was not normal. I was not a normal female. I will never have a period and I will never bear my own children. They didn’t understand much past that.

We lived in a Southern state and my parents were told by my doctor that whatever was affecting me didn’t need to be discussed with me, or even acknowledged, until I started showing “unusual” signs.

It broke my parents’ hearts to know they’d one day have to share this news with me: a little girl who was obsessed with playing house and being a pretend mother. They feared this news would crush me. My parents didn’t know how to tell me and as far as they knew there was no one that could help guide them in such matters…except God.

My parents are very religious and as a reflection would always incorporate something to the effect of “God made me perfect in his eyes and that anything I don’t like, He loves, and that if I have any obstacles to overcome, He doesn’t give us more than we can handle.”

So what I have been in search of during my journey of self-acceptance is finding the silver lining and being happy with the gifts that God gave me. I’ll start off with sharing my list of things I look at whenever I feel down about how I was made.

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