wanna follow me?
Cyrilla Baer
  • Cyrilla Baer
  • Press
  • Media
  • Voiceover
  • Resume
  • Contact
  • Bio & Other Skills
  • Blog

"Hey, I'm Flexible!"

Stories from an actress
with an Invisible Disability

Ehlers-Danos Syndrome - Hypermobility Type

www.EDNF.org

Shaming

5/15/2014

0 Comments

 
Picture
I've been putting off writing this post for quite a while - every time I try to start it, I get terribly upset and it's so hard to put this experience into words - but I have to try.

It is very easy to feel guilt when you've become disabled - you have to rely on other people for things and you often feel that you're asking for special treatment just so you can get through the day. Most people are kind when they know that you have a physical barrier - some are not. But when you have an invisible disability, very few people can even tell you're having a physical problem. Worse, they often openly DOUBT you have a physical problem...

I've read stories of people like me being accosted and shamed for having a Handicap Parking Permit - it's a legit permit, but people assume it's stolen. They've been accosted and shamed because they use scooters to go shopping and they "look normal". I was turned down for the Access-A-Ride program because the woman in charge would only ask me specific questions that just didn't apply to my disability, ignored the info I gave her on their own forms, ignored that while I was able to do what she asked me to do physically that I was in tears while I did it, and just decided that I didn't need help. When I refused to walk up and down a hallway "until you can't anymore", she said "there are other people here besides you and they need help".

Then you get people who just flat-out shame you for being disabled and trying to live your life. The following exchange happened on Facebook when I commented on an article about using the service Uber:

Picture
The people commenting were totally misunderstanding what the article was about, which was how price gouging occurs on UBER during storms and how quickly charges mount up - they thought she was an idiot who paid money to ride for a distance that "could have been walked". So I commented. And here's what happened:
Picture
Picture
WHAM! Shamed. Yeah, he was a troll. Yeah, you should ignore trolls. But I just wasn't in the mood to take it.
Picture
Someone was nice enough to stick up for me:
Picture
Picture
Thing is, even Edward had it wrong about my social life - I don't really have one. I try, but I pay the price in pain after I try, so I limit that drastically. Mostly I'm out and about to go to different kinds of therapy. But even if I WAS going out to have a social life - am I not allowed? What am I allowed to do without being called a "user"?

How do I handle the glowers do I get when I squeeze into a bus seat between 2 people who obviously don't want me there?

I've sent Mayor de Blasio my idea for having a card on a lanyard for invisibly disabled people to show to get a seat. In London, they're asking for buttons, but those seem awful and are too easy to reproduce for people who just want to fake being disabled. I suggested he do it through the Handicap Parking Placard program - we could register for it the same way with a doctor's note, it would be numbered, it would be small but have the logo, we could hide it until we need it so we don't feel branded, and the flip side could say something like this:
I have an invisibility disability. While I look fine, I am probably suffering from chronic pain or severe fatigue or dizziness. Please be kind and allow me to sit here.”


I sent the letter 2 days ago - let's see if he responds. I think it's a good idea.

Anything that can cut down on the shaming is a good idea.
0 Comments



Leave a Reply.

    Author: 
    Cyrilla Baer

    I was diagnosed in February of 2012 with 
    EDS - HT, 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.

    Archives

    July 2018
    July 2016
    October 2015
    July 2015
    July 2014
    May 2014
    November 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013

    Categories

    All

    RSS Feed