WHO GETS TO DECIDE?

I began my day as I usually do. Using Twitter, checking the Internet, reading various stories and news articles, but mostly pieces having to do with illness, disability etc. Then I run across this article in The Huffington Post entitled: "To the Author of the Anonymous Note Left on my Car Window". I hope you'll read it; here's a link to the story.

http://www.huffingtonpost.com/suzanne-perryman-/to-the-author-of-the-anonymous-note-left-on-my-car-window_b_3806012.html

With IC Awareness Month rapidly approaching as well as National Invisible Chronic Illness Awareness Week September 9-15, 2013, I felt compelled to write about this story myself. Clearly, the level of understanding and awareness about invisible illness is nowhere near where it should be. This article is so upsetting. It's difficult enough for those of us with invisible disease to deal with the stares or comments or notes because we are not in wheelchairs, but when a mother with one child in a wheelchair and another with the same disease but not yet wheelchair bound, gets attacked like this, there is something wrong with our society.

This natural assumption that everyone on Disability, using a Handicapped Parking Placard, using Medicaid, Food Stamps - whatever - is; no - MUST be abusing the system and taking advantage of unneeded services is a sad commentary on society and it's unwillingness to feel empathy for those struggling in often many ways they could never understand. This constant barrage of attacks from people accusing patients using these services of not needing them, telling us why we shouldn't be parking where we park; telling us how to live our lives - well it leaves me speechless!

Even before I got sick, I would never presume to think that someone parking in a handicapped space was abusing a privilege they didn't deserve. Is there abuse? Of course there is. There is always going to be someone who tries to "game the system", but there is inadequate research to make snap judgements about someone.

And when did it become OK to stand in judgement of others without knowing them, knowing their circumstances or anything about them? The next time you THINK you see someone abusing these privileges, ask yourself the following questions:

• Are you absolutely sure nothing is wrong with them?
• Many people, especially those with autoimmune & invisible diseases, seem just fine most times, but you would probably be surprised at the amount of physical pain they are in, exacerbated by walking short distances in many cases.

Don't judge a book by its cover. Instead, why not think to yourself "there but for the grace of god, go I". How would you feel if you were on the other side of this? If suddenly one day, your life was turned upside down and you now had a chronic, incurable, painful disease that caused you to sell your home, move in with parents, apply for Disability Benefits and yes, a Handicapped Parking Permit? How would you feel if someone accused you of not being sick and abusing the system?

Before you judge, stop and think for a minute. Do you honestly believe that being on Disability is fun? It's not. It's lonely. It causes anxiety and depression in many. It's emotionally and physically draining. Learning to live in chronic pain is hard! Not being able to leave one's house except maybe on the one day you decide to go with your mom to the grocery store so you can just get out of the house; that's the day someone decides to judge you! 

So, who gets to decide if I am disabled or anyone else is disabled? Some stranger in a parking lot who sees what they want to see? Who gets to judge me and the millions suffering with invisible and visible disease? My doctor gets to decide. Not anyone else. My doctor. And if my doctor believes that I am disabled, deserves a Handicapped Parking placard, etc. then no one else has the right to decide anything about me and my medical status.

Who gets to decide? My doctor! That's who! I am what a person with invisible illness looks like!                                                  

Sometimes I Look Like This!

But Sometimes I Look Like This!

And Sometimes I Have to Use One of These!