Steve Harvey's - Just curiosity or Freak Show?

[Guest guest]

Well, maybe, but I don't know. I seem to be more mobile in my wrists and

ankles and fingers, then the next are my shoulders, then hips. My knees and

elbows are only slightly hypermobile.

But, I have pain in them all.

**************

I wanted to throw in my two bits here.

Keep in mind that I am newly diagnosed, real about how the world has reacted

to me undiagnosed, EDS research and the publics curiosity.

I think we might be a bit too hypersensitive to this " clown " issue. Does it

really make a difference if these people who choose to display themselves have

EDS or not? Personally I don't think so.

I am sure most of us at a very young age did the party tricks that we knew we

could to impress our friends... EYE did!

I would turn my eyelids inside out and freak out my friends in high school.

When I was a little tiny girl in ballet, I used to do the splits every fee

time I had being sure there was someone looking. Because the splits were so

perfect, my instructor used to have me do the splits to instruct the other girls

on " the right way to do the splits " . Of course, there is no way they could

have done it like me but I didn't know that and loved being the center of

attention!

I would ask my brother (3 years older) to let me play tag football cuz I knew

I could wow them by wiggling out of a tackle. I would usually end up tearing

something but that didn't matter. I was impressing the boys and that is all

I was after.

Just for sh---'s and grins, to this day, I will stick my fist under my knee

cap while I am sitting in a waiting room or at an airport to see the amazed

face on onlookers!

So.... for the public to find the " weirdness " or what ever you want to call

super hypermobility an interest to behold is not, in my opinion unusual. After

all ... for years men and women with disabilities were the only ones in a

Circus act.

I am not saying it is right to display men/women/children with EDS

" qualities " as a freak show but what I am saying is that it has and will be done

because

.... we have to admit it is a curiosity!! Even my MOM to this day, is still

amazed when, not by purpose, I do something with my body that most humans

cannot even imagine is possible. And she has been by my side for all 26

surgeries,

therapy and ultimate injury again.

As far as these people really having EDS? Who is to say. Perhaps ... But if

someone were to ask me to join a circus or perform on a talk show, I would

have to decline because I could not possibly - do to pain, fatigue and the

likelihood that I will dislocate a joint pretty seriously that would at some

point

have to be put back in place by painful manual manipulation or surgery.

It matters that people with EDS are taken seriously, given grants for

research and deemed truly disability if indeed so, but I doubt a handful of

" demonstrations " for public enjoyment is going to lessen our plight.

Just my opinion ... spoken from the heart. (no poison darts please!)

Debbi