Monday, 16 May 2016

My Spoon Life and Special Events

I love conventions, concerts and other events that let me express my love of books, music and fandoms. It also allows me to interact with people about like subjects. But there's one thing about me that makes me different from other people who go, and that is that I have a physical disability.

Now for some able-bodied people, they think people with disabilities get all the privileges at these types of events. Well, 

So, I'm going to start with an illustration. For this analogy, we're going to use 
Spoons represent the amount of energy one has in a day. Now for most folk, they have an unlimited amount of spoons, but for someone with a disability or chronic illness, they have a limited amount of spoons in a day. For instance, let's say I have 24 spoons per day and once they're used up, I can't regenerate anymore. However, I can borrow spoons from the following day(s), but then I need to remember that the spoons are used up for those days. Everyday, I automatically spend roughly 8 spoons just for breathing. I have no use of my diaphragm, so I manually tell myself to breathe. It's not that my brain doesn't work, it's that my diaphragm doesn't register that my brain told it to work. After that, I have 16 spoons left for my day, various amounts being used for walking, working, doing daily chores etc. 

Now let's say I am going to an all weekend convention, I need to make sure I don't crash and burn at the end because that can lead to me getting sick. So throughout the days leading to, I'll save spoons by going to bed early, not go to the gym because I know about all the walking I'm going to be doing, take it easy around the house and do the minimal upkeep, make sure I'm ready for the weekend ahead of time. 

So now onto me going to conventions and concerts. First off, most people think about what they're going to wear and depending on the event, they either go for comfort or style. One downside to my disability is that I need to make sure I can breathe clothing wise and not overheat from walking or excessive moving. Then let's talk about 

Most people want comfort, but I have to think about how much walking I'm doing before anything else. My feet need proper support before comfort. 

One thing that is important to anyone is 

Ah, water, the refreshing drink that makes our bodies function like normal human beings. This is one liquid I need to make sure I have on me at all times, or else I'm not going to do well. 

One thing I need to remember when I go to these things is parking or ease of transit at the end of the day or show. Most of the time when I'm ready to go home, I'm tired and maybe have 1 or 2 spoons left to get me into my bed. So this is one thing that my disability gets priority for.

So after I figure out clothes, shoes, making sure I have water and all the other necessities for a convention, such as money, a backpack or bag, and food, i can finally go!

Now like any convention goer, I make sure I get a schedule as to whose where and when. I normally shop for items on the second or last day of the show because then I tend to have had enough time to cover the floor, see what's available and figure out what I want. Now because I've only been to local conventions, I know some of the vendors and the people who run the show, so I always like to say hi. Never in this time do I use my powers of being disabled to try and get free stuff or ask for discounts because I'm on a limited income. Not only is that not fair to the vendor, but also to other people around who see this treatment. 

Now let's talk about when I go to meet celebrities, I've met my fair share of "famous" people. I can count on one hand how many of them gave me special treatment, and the number is 0! If I'm in a crowd or group of people waiting in line, I'm never picked out and I always wait my turn to go. Also, I never point out my disability because it's 

I don't want to be "That girl whose disabled" to people. I'm Kristie and I always will be. My love for a book, band or actor doesn't stem from my disability, so I don't want that to be what the person loves about me. 

Do any of these people look like they pity me? Hell no. That'd be like me going all fangirl and freaking out because I'm talking to them. They appreciate me as a fan and I appreciate them as a person. Plain and simple.

One thing I need to always do more often than most people is to stop and sit down. Because of all the energy by walking, breathing and carrying stuff, it's good for me to stop and smell the roses once in a while. 

I guess what I'm trying to say that besides requiring and spending more energy at these types of events, it doesn't mean I get anymore special treatment than the next person. Now I'm leaving this open to discussion. Please leave in the comments and tell me what you think. 
Design by EvieSeo. Powered by Blogger.