Living with an "Invisible Disability"...

Well, if you have watched my introduction video about my story and living with Stickler Syndrome, you know that I address the issue of always wishing I could be what I thought was "normal", meaning having a life without all these medical issues, well I'd like to kinda address that again but in a different way. 

As someone living with Sticklers Syndrome, I know that it is a syndrome that is often considered to be an "Invisible Disability" meaning when you look at me, it isn't directly obvious that I have any sort of disability or even anything wrong with me at all, and that is something I feel that I am reminded of on a daily basis. I cannot begin to explain just how many times I have heard, "oh, well you don't look disabled", "you couldn't possibly be physically disabled, you don't have a wheelchair", "well you look normal", or just plain ole' "you're not disabled". When I hear these sort of comments being made to me, normally it is because someone thinks I'm faking it or thank there is no chance anything could be wrong with me cause I look normal to them. Don't get me wrong, it is nice to know that it isn't incredibly obvious that I suffer from physical disabilities, but that also is a curse just as much as it is a blessing. 

Here is an example of something that has happened to me on many occasions. Due to the fact I have had 36 surgeries and certain physical activities like walking long distances can be very debilitating for me when I'm dealing with stuff post surgery or possibly dealing with a new dislocation of my ankle, knee or even my hip, so I have a disability parking pass. I legally obtained this disability parking pass and only use it when I desperately need to due to my medical issues, which unfortunately has become much more frequent in the past 6ish years since j originally got the parking permit basically. 

Well, time and time again I receive judgemental looks, or hear people whisper to their friends or even have had people actually approach me for parking in a handicap parking spot when I have a handicap parking permit, just because when they initially look at me, they do not see a disabled individual. It's safe to say that it does get very annoying after awhile but it also hurts me as well because I shouldn't have to defend myself for being disabled and taking advantage of the resources available to me. 

Well, typically when this happens, I really try to just shrug it off and let it go, it's not worth the energy to get upset over the looks or comments people make to one another about me, but it's a different story when you decide to make an example of me and think you're doing the right thing by confronting me about Peking in a handicap parking spot. So when this occurs, and unfortunately it occurs more often than I wish it did, I do defend myself to a point, but there are some people who are just plain rude and mean when it comes to situations like this. 

Here are two separate occasions that I was approached by someone for being parked in handicap parking when I legally could park there, and they both had to different reactions. 

First, I went to a well know fast food place here in Missoula and parked in handicap parking because I had recently dislocated my kneecap so walking even short distances was hard on me, well a man who was sitting with his young son at the front window witnessed me park there and gave me one of the dirtiest looks I had ever been given, but I told myself just let it go, it's not worth it. So, I ordered my food and as I was waiting for my order the man who had watched me park in the handicap parking spot decided to make an example of me in front of his child by approaching me about my parking choice... 

His words were, "um... Excuse me but you're parked in a handicap parking spot." My obvious response to him was, "yes I know I am." He proceeded to tell me how don't look handicapped and how I shouldn't take advantage of something like that when I CLEARLY have no idea what it is like to live with a debilitating physical disability. I was so incredibly caught off guard by this I didn't even know how to respond. So I simply told him, "well, thank you for that speech, but I actually am disabled and have the right to legally park there because I have the permit to." All he had to say to me after that was, "well you don't look disabled!" And just turned right around and went back to eating with his son. I was so distraught by this that as soon as my order was up I tried my best to get out of that building as quick as possible and just got to my car and cried... After that, I told myself that I shouldn't have to defend myself like that ever again, especially to a complete stranger and after they were nothingn but rude and judgemental to me.

Well, needless to say, I have since had more situations like the one I just explained come up over and over again, and I finally came up with the perfect comeback to someone who decides it's their job to point out to me that I don't look disabled,, and I'd love to share that heat, but firt let me explain when I came up with this wonderful comeback! 

Well, this time when I was approached again by a complete stranger about parking in a handicap parking spot, it actually occurred when I was just getting out of a doctors appointment. As I was walking back to my car, I saw a truck slow down near my car as the driver was searching for a parking spot, and the only free ones happened to be in handicap parking, and from what I could see he did not have a handicap parking permit or license, well as I proceeded to my car, the man driving the truck decided he needed to literally park his truck behind me so I couldn't move my vehicle and actually get out of his truck to approach me about parking in a handicap parking spot. Now this man was even worse than the one I described earlier, he not only was rude and mean but he was actually yelling at me through his entire speech and even told me it was pathetic of me to take advantage of what is most likely my grandmother's handicap parking sticker. Once he finally shut up, I told him, "well I'm really sorry that that is how you see me, but I actually am disabled and where I park really shouldn't be any of your concern." Of course, automatically his response was, "well you don't look disabled!" So I said to him, "well you don't look like an idiot, but I guess we are both wrong on our assumptions of each other." I could not believed how stunned he looked, I immediately unlocked my car and got in and he quickly turned around, got into his truck, and sped off... 

I felt empowered for standing up for myself, although I did feel slightly guilty for insulting the man and calling him an idiot, I just was so frustrated with him and his actions toward me that the guilt I was feeling was very minimal. Maybe I should have said something different to him, but I'm not ashamed for doing it and I do not regret it. So I've decided that if anyone again feels the need to be rude and mean and even someone aggressive toward me about not looking disabled or for parking in a handicap parking space when they think I shouldn't, then I plan on saying to them exactly what I said to that man. 

It literally breaks my heart to think that someone can be so quick to judge simply based off of another's looks. Just because I am living with an "Invisbile Disability", doesn't mean that it isn't any less debilitating than what someone else may be living with. It isn't anyone else's job to remind me that I don't look disabled, I already know that. 

My only hope is that people will take out of this the fact that just because someone who may not look disabled in your eyes doesn't mean they aren't disabled, and that people should really think before they approach anyone in this sort of situation, because you honestly aren't making it better, you're just making it worse, more uncomfortable and making those of us living with "Invisible Disabilities" feel like we are just an inconvenience to you and the world around us. 

What do you all think? Do you think I approached the situation in a good manner or to the best of my ability at least, or do you think I should have gone about it in a completely different way??  

Have you experienced any sort of situations like this simply because you don't looks disabled?? 

I'm very curious to hear your thoughts over the matter! 

XOXO, 

Courtney