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April 22, 2009

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yanub

On the one hand, I think people have the right to pimp themselves out anyway they want, and that there is nothing inherently wrong with making a living off the way one's body is. After all, why should it be OK to earn a living for being classically beautiful, but if you are unusually odd looking, you also have to have skill or talent?

On the other, contortionist acts tend to encourage injurious mimickry and discourage doctors and parents from taking joint laxity seriously.

elizabeth

I am not particularly surprised by the photos, thought I delighted in looking at them, as I had, that type of elasticity, but now do not as much, though I was written up for having an "opposable shoulder and scapula" (much as people have an opposable thumb) which I can still simply dislocate, or rotate out to gain extra distance in reach and sports.

Also a tall female, I wish there was a site for things people come up and say to you, or more likely people on subways and buses say when you stand up. That was always that, grit your teeth moment.

I think that more education on EDS needs to occur in the general population as is happening with other disabilities like autism spectrum disorder and ADHD. Knowledge medically of conditions like marfans is far different than it was 10 or 15 years ago, and I hope that EDS also gets education to both the 'positives' and the pain and costs. As you point out, with Snake Girl, she supports them, and I think, in a lot of ways, people who embrace the 'difference' can bring joy (and education) to others. And joy is a gift, I am thinking of your Great-Uncles Party Trick. I also think of the gentleman who performed at the M. Rouge in Paris, and all the best spots making a living at his musical farts along with his other mimicry of controlled um, passing wind - he has books from the time on him (I have one - as well as a pamplet), and was a sensation - to have seen him was like seeing Pavorati sing in person. You just weren't anyone until you had seen!

Not EDS, not sure if that was some sort of years of disciplined control (?????) or another condition, probably a form of biofeedback to the level that people on autism spectrum disorder can have. Sorry, you have your favorite, I have mine.

Thanks again for the great illustrated and interesting look at these conditions and the community of 'freaks'

fridawrites

Very informative posts. I am not nearly so bendy as these people but I have weirdly long fingers. In my case, it makes me a superfast typist. Before my major fractures as a kid and then in better health for a while in my early 20s, I did ballet. This makes me wonder how many ballerinas succeed because of hypermobility conditions--I was extremely flexible with little stretching (absolute turnout), though not as much as some others (spine mobility was low, could get a good very high arabesque but not a good torso arch when bending back, a major drawback). That kind of flexibility sometimes seems to be seen as talent rather than luck in the ballet world. I wonder how many are EDSers--many do seem to have naturally fragile bones (not just from anorexia).

Carleen

It's been a while since you posted, so I hope that all is well in your world!

I've selected your blog to receive the Premio Dardos award in recognition of cultural, ethical, literary, and personal values transmitted in the form of creative and original writing.

Please stop by and retrieve your award from http://lifelibertycoffee.blogspot.com/2009/04/life-liberty-and-good-coffee-honored.html

One Sick Mother

Yanub,
Your dilemma is my own. My concern is that many people who do pimp themselves out are unaware of the potential dangers of doing so, so their choice is an uninformed one.

Grace saw this post (she didn't know I wrote it) and was fascinated by the pictures of the "max flexible girls" I had to reiterate that attempting stuff like that is dangerous for her.

Elizabeth,
Thanks for stopping by! I am not that elastic by any means, although I can do some things which normies find freakish.

You are totally right about education and awareness for EDS and hypermobility. It is very misunderstood still. I have had trouble with my kids school -with people who SHOULD 'get it' the OT and the PT, who are (purportedly) *trained* in this stuff, completely failed to see it or to understand why it might be a problem. When you have to educate the Physical Therapist on hypermobility, you know the rest of the population is completely clueless...

Please never tell either of my kids about farting Moulin Rouge Guy, because I know... just KNOW that at least one of them (probably Grace!) might aspire to such a career...


Frida,
I am not as bendy as those pictures, the criteria for EDS are not that extreme.

Many EDSers do have issues with osteopenia and osteoporosis relatively early in life. It is not known why, although it is speculated that many other EDSers share my problem of not absorbing/ storing some vitamins and minerals properly.

Carleen,
Yes, I have been a bit depressed and unable to write. I think (hope) that is behind me now. I am feeling better and -oddly- am seizing more again (I was seizing less when depressed -go figure!).

Thank you, thank you, thank you for this award! I am flattered less by the award than by who selected me.

-OSM

Rita

Hi,
I am the 5'4" person in the photo with Sandy Allen. She was my friend for 31 years and I wrote a book about her called "World's Tallest Woman: The Giantess of Shelbyville High" (Hawthorne Publishing, available at amazon.com). Thanks for your nice post, but here is a correction: She was never at the Smothsonian. Her gig was at the Guinness Museum of Records in Niagara Falls, Canada. She was there for 8 years, then came back to Indianapolis to work in the mayor's office, then the Dept. of Public Works, till she retired. She was an awwesome woman, warm and caring with a great sense of humor. She is greatly missed by all who knew her (and some who didn't).
Rita Rose

One Sick Mother

Rita,

Thank you for your correction  (that explains why I had so much trouble finding that info. I got stuck on Smithsonian) and your kind words. I will update that post to reflect the facts.

OSM (who is one of the ones who didnt)

ysabella

I can do the last 2 stretches shown, and stand up straight, then bend and lay my forearms on the ground without bending my knees. I think it's just because I run and swim and stretch all the time, but that was...enlightening.

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