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"Hey, I'm Flexible!"

Stories from an actress
with an Invisible Disability

Ehlers-Danos Syndrome - Hypermobility Type

www.EDNF.org

An Open Letter to JEFF BEZOS

7/17/2016

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(First, I need to acknowledge that this has nothing to do with acting, disability or Ehlers-Danlos Syndrome. At least, not directly. But when the things that have given you meaning your whole life are taken from you by fate, I think it's a good and healthy thing to look for ways in which you might still be able to affect society and your world. This is one of mine.)

Dear Mr. Bezos,

Your company has been a great help to many people. (I don't agree with all your business practices, but I've made those points before when talking with your customer service reps - all of whom have been very nice - but this post is about the good stuff!)

As a disabled person who has great difficulty shopping normally, I can get braces and supplements along with everyday needs sent to me easily and quickly from your company. I can have some of my purchase go to charities of my choice through Amazon Smile. And I have been able to assist businesses like Noah's Ark Animal Sanctuary and movements like Occupy Sandy through the use of Amazon WIsh Lists, where otherwise my disabled body would keep me from being of any real use. I LOVE being able to help like this, and I know others do, too. 

My boyfriend took me to India this past winter. We didn't go the usual tourist routes, but planned our own. We ended up staying in many poor villages with one grand haveli or palace converted to a hotel (heritage hotels). My boyfriend, Rick, is a photographer and he would walk through these villages a lot. The people were always welcoming and friendly, and I mentioned more than once that I wish we could find a way to help their villages without worrying that the money would just disappear into someone's pocket. The cost of living is so different that just a little money could make a huge difference. We met a couple from Australia who felt the same, and said they saw that one of the hotel books had instructions for travelers who wanted to help the town to bring money to the desk and they would direct it for water and school supplies.

Then I thought of Amazon India. And the Wish Lists!

Again, so many of these heritage hotels are the only big thing in their village. Why not set up an Amazon India Wish List for every town that was willing? The info to go to the Wish List could be in every hotel guest book - perhaps even provide an easily printable template for the hotel to put in the rooms! The tourists could pick from that village's Wish List and spend just what they want and the list would be for the things the village knew they needed! Everyone feels protected and cared for! Amazon makes money from tourists from around the world who travel to India! The hotels have an easy way to direct the inquiries! It's a Win/Win/Win!

Mr. Bezos, please consider looking into the feasibility of this. I really think I've stumbled onto something here. Let a disabled actress feel that she can still accomplish some worthwhile stuff in this world :)

Thanks for your time,
Cyrilla Baer Pond

(If y'all like my idea, you might want to tweet to @JeffBezos)
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    Author: 
    Cyrilla Baer

    I was diagnosed in February of 2012 with 
    EDS - HT (now called hEDS), which is a genetic connective tissue disorder (it's why I can bend my elbows backwards!) I've kept it under wraps, but I'm out of the medical closet now.

    EDS is caused by the body's inability to make collagen correctly. Collagen is in all connective tissue and connective tissue is part of every organ and vessel in your body. While your tendons and ligaments are like rubber bands, mine are more like taffy.

    For more info, please see my post "30 Things You May Not Know About My Invisible Illness", or visit EDNF.org or CEDSA.org. And tho it's a little dated (we try not to call it Joint Hypermobility Syndrome anymore), this is a description by a doctor putting it in  layman's terms.

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