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Ramblings of a Misguided Blonde

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Thursday, January 22, 2009

Sometimes A Comment Can Make You Stop and Think

Turner Syndrome and Sex - Ramblings of a Misguided Blonde

The above link actually goes to a "shadow" blog I use on Wordpress. Essentially, I import all of my posts from blogger into my Wordpress account. There are several reasons for this. 1. I can reach more people. 2. I have a back up version of my blog if something ever happened to Blogger. 3. I wanted to learn how to use Wordpress.

Well, from time to time, I get an e-mail saying that I have a comment on the Wordpress version of my blog. Sometimes it is spam, sometimes it is a nice note. This time, it was a revelation.

Here is the comment I received from Actorgirl:

"As someone who also only recently found out that some people are calling TS an 'intersex' condition, I'm with you. Not only puzzled, but really kind of offended. I am female, as is every other woman I know with TS. It's bad enough having my doctor (who I really do love, but she occasionally blew me away when I first starting seeing her) say, "You know, you've really changed my mind about TS." She had also been under the impression that women with TS were mentally retarded. This bothers me even more than that-- almost as much as the 'professor' in the graduate level Child Development class who called girls/women with TS 'creatures.' ::SIGH::

You are SO right about the questioning whether you are a 'real' woman, and it does NOT make it any easier to be told that you really aren't even FEMALE. Particularly for those of us who are mosaic or who are not 45X but who have one partially missing or partially repeated X chromosome... as you stated, no confusion about genitalia, no confusion about chromosomal gender. But a LOT of possible gender identification issues when you're told you're NOT what you ARE. I really honestly don't think TS meets the definition of an intersex condition, and we are all most assuredly females!"

This is what I wrote in response:

"Actorgirl, thank you so very much for commenting. I couldn't agree with you more. It seems to me that the most likely people to treat us (Turners women) as anything other than the women that we are are in fact doctors. It seems as though all too often doctors can’t get past the diagnosis to see that a human being is there right in front of their eyes.

How on Earth anyone could characterize Turners women as retarded is beyond me. Quite frankly, I don’t know any Turners women who haven’t at least earned a bachelors degree. I say that because it means that despite the fact that some may have learning disabilities, they are more than capable of managing the educational system.


(You can read the original post here.)

As you can see, I have some definite views on the subject of intersex conditions and how Turners Syndrome is perceived by many people. What angers me is that there are so many people who want to label it a disability. A disability? What has it prevented me from doing in my life, besides reaching things on high shelves and having children the old fashioned way?

1. There are a lot of short people out there who don't have Turners Syndrome. Are we going to consider everyone who is short disabled?

2. The same thing goes for men and women who are dealing with infertility. There are many, many people who are unable to have children naturally.

I realize that there are a whole host of issues that can arise with Turners Syndrome, but most of the women and girls affected do not have serious physical disabilities (if any). With regards to mental disabilities, aside from very specific learning disabilities related to math and spatial reasoning (which are not always present), the rate of mental disability is comparable to the rest of the population.

Why then do we try to put artificial limitations and labels on individuals because we perceive them as different? I know that it is a human trait, but it has serious consequences. It just goes to show you that a simple comment can make a person angry all over again. I just wish that there was something constructive that I could do about it (aside from correcting misinformation when I see it).


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At 11:19 PM, Blogger Cheryl said...

What an amazing comment. So glad she took the time to write that and send it to you.

I completely agree with what both of you said. As a fellow TS woman, I can't believe how educated professionals are willing to marginalize and categorize us.

These attitudes surely don't come from direct knowledge or experience with Turners patients. I guess it's because we are so few and most do not meet us in their practice. But still, it is upsetting and the attitudes seem so antiquated.

At 11:30 PM, Blogger russelllindsey said...

Cheryl, they ARE antiquated. I literally haven't met a TS woman who does not have at least a college education. That doesn't mean everything, but it certainly makes a statement.

I used to go to the conferences when I was a college student, and I have met dozens of TS women. We are an amazing bunch.


At 11:07 AM, Blogger Actorgirl said...

BEAUTIFULLY written, Lindsey. It IS often the doctors whom I have found to be the least interested, the least concerned. I am glad I finally found the one I have-- although she doesn't have a lot of experience with TS, and actually asked me what my IQ was when I first saw her (LOL!!), she has been the most honest, treated me as a human being, and willing to do what I ask her to do.

And as for a disability.... absolutely not! Like you said, I have trouble reaching tall shelves (and I'm very creative about doing so! LOL!), and that's about it. And, in fact, I worked in a school a few years ago where there were at least 5 women who were about my height, and none of the others had TS. As you said, a lot of people are 'short' for a lot of reasons, and it's NOT a disability.

That is actually one of the main reasons I don't usually tell people- there is no need for me to be treated differently, nor do I want that. I'm not disabled. I also think it was a good thing I wasn't diagnosed until I was in junior high (so there were no expectations of 'disability').

At 11:37 AM, Blogger russelllindsey said...

Actorgirl, I used to not tell anyone either, especially when I was growing up. Unfortunately, there were a few instances where people found out, etc. It was not pretty.

Since then, I really haven't cared much if people know or not. I felt as though I was trying to hide something that made me who I am. Now, I like talking about it here for the various reasons we've discussed. There is still so much misinformation out there.

I could tell you stories of people I've met who really were worse off by not having all of the information. Why should we be ashamed of who we are?


At 10:35 PM, Anonymous Anonymous said...

You are so lucky to have been diagnosed early. I just turned 30 and have only come to realize what all these years of anxiety over body issues really boil down to .I had no idea until I took an honest look at my issues and realized there was a name for it.

I too, consider myself very normal. I saw my body as "bad luck" and not a real condition all this time. I've never been thin and seem to never shake 145 pounds, but I've never been obese as many TS reports suggest we should be. I've always been short, but at 5'3 I wouldn't consider it unusual, just maybe undesirable for me, especially since my mother is 5'11. People always asked if my dad was short. Well, I never met him, but I saw a picture once and he seemed tall. I never had the courage to ask questions about that, I just took it as "that's just the way it is". I'm well educated, a talented artist (despite the fact that TS women are supposed to have poor depth perception). I actually am an art teacher today, working on my Master's in Art Ed. This whole idea we are supposed to be retarded cyclopses with no breasts and deformed arms just never hit home with me at all. It was only after I started reading more personal accounts and in-depth studies of individuals, also looking at photos of people I realized it does make perfect sense.

Admittedly, I only went to the gyno for the first time when I was 27. I felt like I was finally ready for answers, but I got few. My doctor ran so many blood tests and checked my hormone levels, but everything was super normal looking. Then I had an ultrasound, because a pelvic exam was not really possible. This was my first realization something was truly not right and it might not all be in my head. It turns out I have a very small cervix and one ovary for sure, but they couldn't tell if I had another. They just focused on the fact that I had gal stones of all things. I was like, "Who cares? What the hell is wrong with my female parts?" I asked my female specialist about TS and she ran down the list of things and many of them gelled, but when she started asking about learning difficulties, droopy eyelids, and a "shield-like chest" I could tell she was actually nervous and embarrassed! Like, who wants to say out loud, "yeah, I have the breasts of a 10 year old girl, and oh yeah small hands, no curves on my body..." To be honest, half of the questions didn't pertain at all! BUT, just enough of them DID remarkable pertain to me, though she was so set on the fact that I should look "weird" and be talking like Mush Mouth from Fat Albert, that she said, "no, I really don't think you have this, I'm going to send you out to a university hospital to have them run some tests." I gave up with her, honestly. I didn't want any more poking and prodding. I wanted my diagnosis, but they weren't even looking at my chromosomes!

At 10:35 PM, Anonymous Emily said...

I know I'm not a freak. Inside, I have felt different when I stood at my bedroom mirror thinking, "I wish I could duct tape my body under my t-shirt so I would have some kind of shape" or, "how is it possible to have no ass, no boobs, but a gut like I just had a baby at 15 years old?" I'm not gonna lie, my life has been putting on a good front for people even before I knew anything was medically wrong. I have been pushing my issues to the back of my brain as much as possible. I've spent a lot of money on clothes and accessories over the years to look as cute and pulled together as possible to distract from my insecurities. I don't date and I avoid talking with my friends about dating, sex, marriage, children, etc. It's harder to do that now that I'm 30. I want to continue to live as normal and oblivious life as possible, but I've come to realize that even if I can't change the past insecurities, I need to address my future plans in a more responsible way. I don't want to live my life thinking about TS all the time, but I have to come to terms that it has shaped my life despite my efforts to ignore it and divert other people's attention from my social and physical awkwardness that has resulted from it to move on through life and be happy. I guess I need to figure out the rest of my definition of "happiness" first, but I'm not going to let TS stop me from finding it.


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