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/
Showing posts with label intersex. Show all posts
Showing posts with label intersex. Show all posts
Monday, June 25, 2012
Monday, December 19, 2011
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.
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.
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!
Tuesday, March 16, 2010
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
Friday, March 5, 2010
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?
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?
Saturday, February 27, 2010
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?
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?
Saturday, August 22, 2009
Caster Semenya and the Rules of the Gender Game
If you've been watching, or reading, or listening to the news lately, it's likely you've heard of Caster Semenya - probably less for her extraordinary athletic performance in the 800-meter race and more for the controversy surrounding her gender.
The press has been mostly sensationalistic because it seems everyone loves to jump onto a story about the latest medical "oddity". Finally came across a NYTimes article today which gives a nod to the difficulties Semenya must be facing now and in the future as a result of this; in addition to considering the difficulty of defining gender itself.
"Where's the rulebook?" it asks.
Androgen insensitivity syndrome is mentioned in the article. Being androgen insensitive myself, I am an example of how it's not chromosomes that can define someone's gender.
Though the sporting world probably wishes it were more clear-cut, I don't think they'll find easy answers to gender definitions anywhere -- not in the genitals, not in the pitch of one's voice or the cut of one's jaw.
The Times article makes a great point in particular with the following:
Sure, in certain sports, a woman with naturally high levels of androgens has an advantage. But is it an unfair advantage? I don’t think so. Some men naturally have higher levels of androgens than other men. Is that unfair?
Consider an analogy: Men on average are taller than women. But do we stop women from competing if a male-typical height gives them an advantage over shorter women? Can we imagine a Michele Phelps or a Patricia Ewing being told, “You’re too tall to compete as a woman?” So why would we want to tell some women, “You naturally have too high a level of androgens to compete as a woman?” There seems to be nothing wrong with this kind of natural advantage.
Sports officials have claimed the genetic tests on Semenya will take weeks due to their complexity. In my opinion, it's not the tests that will take weeks--those will take days. It's the ensuing debate over the results and figuring out what comes next which will take the real time.
Though I hate for Semenya or any individual to be placed in the spotlight amidst such controversy, on the positive side I think this whole issue is forcing a more open dialogue around a subject which continues to be taboo.
Folks who are intersex, or who just don't neatly fit our definitions of the binary male/female condition, have been around as long as human history, and it's a bit sad that we haven't wholly accepted them.
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