Friday, March 22, 2019

Invisible Illness

I had no intention of writing this post, but following a comment made last night I felt the need to make this clear.

JUST BECAUSE SOMEONE DOES NOT LOOK SICK OR DISABLED, DOES NOT MEAN THAT THEY AREN'T....

So what prompted this?

I parked in a handicap spot at the Bruins/Devils game at the Prudential Center in Newark, NJ last night (3/21/19). My handicap placard was visible, and as a result I was instructed to pull into a separate handicap parking section. It was conveniently located on the same level as the bridge that takes you into the Prudential Center from the attached parking garage.

I arrived early, as I always do, so there were only a few other cars in this particular section (no more than 4). As I was sitting in my car, making sure that I had everything I needed for the game -- phone with mobile ticket, wallet, emergency medications, etc. (I will probably write a post later about planning for an event because it's not as easy as just going to the game...it takes preparation when you are disabled), a garage security guard approached my car (the same one that instructed me to pull into the lot in the first place). I opened my door to make sure that everything was okay and to ensure that I was, in fact, in the correct location. I pointed again to my handicap placard and stated that I would be using a wheelchair for game. He looked down at my knee brace (it extends from my thigh down to my ankle so it is hard to miss) and said, "you have a bad leg, okay, you are in the right spot."

He then explained that his manager had told him to make sure that people actually needed handicap parking before allowing them to park there because recently people were utilizing handicap parking but were able to walk.

So, that's not how this works...

First, since when do parking garage attendants get to decide when an individual can utilize their handicap placard? If someone has a handicap placard, they can use it whenever they feel it is necessary. Sometimes that means only on "bad" days, and other times people use them everyday. That is for the individual to decide, but they should not need to justify using one to anyone.

Also, able-bodied individuals do not get to decide who is and isn't disabled just by looking at them. Many disabilities/illnesses are completely invisible; meaning a person may look perfectly healthy, but internally are anything but.

I have more than 8 chronic illnesses. Some of them are visible and some are not. With EDS, for example, I wear braces to stabilize my joints everyday, and I often use a wheelchair or crutches for mobility. Most of the time my braces are visible (though I do conceal them when possible) and, of course, my wheelchair/crutches are as well. However, if you took those mobility devices and braces away, EDS is actually largely invisible. That doesn't make it any less disabling. I still dislocate my joints constantly, live with significant pain, and struggle with countless other symptoms.

I also have a form of Dysautonomia (autonomic dysfunction) called Postural Orthostatic Tachycardia Syndrome (POTS). [If you want to learn more about POTS click here] As a result, my body does not tolerate being upright for very long. Simply standing up is like running a marathon for my body. When I stand up, my heart rate increases rapidly (tachycardia), and I often feel lightheaded, dizzy, and nauseous. This can lead to fainting if I am unable to adjust in time. But if I don't faint...POTS is  invisible. It is also just as disabling as my joint dislocations and chronic pain, and incredibly exhausting when your body is constantly trying to stabilize your blood pressure and heart rate.

There is no specific way a disabled person should "look." We come in all shapes and sizes, with visible and invisible illnesses. Also, just because someone CAN walk does not mean that they are not disabled in other ways (ie. autonomic dysfunction/POTS).

Disabled

Still disabled...


I know it can be difficult, but please....don't be so quick to make assumptions or judgments about a person. Just because they look healthy, does not mean that they are. And they do not need to justify it to you...





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