Tag Archives: Disability

The Word I Hate The Most

I really hate the word “disabled.” It sounds like there’s something wrong with me. I’ve been working on my story for the past couple of hours, and many of my characters have some kind of “disability.” Kithryd is paralyzed, and Iris has intense anxiety. Kithryd has telekinesis, and Iris has pyrokinesis. Before you have to ask, yes, this is totally wish fulfillment.

A couple of days ago I found myself griping about how I’m not physically capable of doing a lot of things. Because my body isn’t “normal” I will have to live at home indefinitely unless I want to go through the giant hassle of, first of all, finding a place to live, and beyond that, figuring out how to get help with things. I need help with really basic stuff. I need help bathing and getting from my wheelchair to the shower or my bed or what have you. A lot of things that most people would consider very simple are rather complicated when you’re me.

Most of the time this stuff doesn’t bother me, but the other night I was griping. The thing is, I’m capable of a lot. I’m creative. I’m intelligent (yes I’m bragging). I love like a crazy person. I can write. I’m unreasonably optimistic. I try to be humble and spiritual. I asked God the other night why he would give me a mind that can understand the world, and a heart that loves it and wants it to be good… and a body that’s so broken. I actually used that word. Broken. There’s something really screwed up about that.

When I was born I was diagnosed with a kind of Muscular Dystrophy that was supposed to kill me by the age of three. I believe I’m alive today because my mom prayed, and God spared my life. If I wasn’t supposed to be alive I wouldn’t be here. For the record, I am still undiagnosed. The doctors can’t figure me out, and you have no idea how hilarious that is to me. I revel in it.

I am not broken, and my characters are not broken. This stuff is on my mind now because I was working on the political and social atmosphere of my story. A lot of my story is meant to be about what’s going on politically, as well as the actual actions my characters take. After World War III, which took place around fifty or so years before my present story, the world’s population was almost wiped out, and many of the following generation (about 30%) were born with some kind of “disability,” however, they also tended to have various psychic powers. The corrupt government in my story started using propaganda to get the public to believe that these people were somehow “less,” and that many of them were even criminals because of their abilities. This is not necessarily the focus of my story, but it is going to be a prevalent part of the atmosphere.

The point is that when I was writing out my plans, the word “disabled” kept popping up, and this started to get under my skin. This word is so ingrained in our culture, that even I couldn’t think of a word to replace it. I am not disabled because God made me who I am. I’m not perfect, either, but I’m certainly not broken. The word “disabled” implies that there is something wrong with me. When talking about these things people focus on the things that people like me can’t do. People have to be unusually nice to people like me because our lives are so difficult. Our lives must be awful.

There is nothing wrong with me. I use wheels instead of feet to get around. I learned how to adapt so I could play guitar upside down. I intend to learn how to play violin. I can write ludicrously complicated stories. I was the first of my friends to graduate college. I have dreams. I want to change the world. How is that the mark of someone who is broken? How is that the mark of someone who is “disabled?” I’ll admit that I need help with basic stuff. This annoys me sometimes, but it is how it is and it’s not going to change, and it doesn’t mean anything. It especially doesn’t mean that I should be pitied. That is probably the worst thing you can do. Do not pity me. Do not pity us.

You know what? There is no “you and me.” There is no “us and them.” We’re all just different. I might not be able to get a job at Starbucks to make a little extra money (which believe me, I want to do), but I can teach middle school kids who Jesus is. I can love-spam the internet. I can express my ideas, and the ideas of others concisely and coherently. I can dream. I can trust that, despite the complications, I, and the rest of the world, are part of something excellent. I can stubbornly believe that everything will be better than okay. I can hold on to the fact that I, with all my weird quirks, am made in the image of God, and I am not broken.

Because in my world guinea pigs can fly!

The Forgiveness Of Birds

This probably means a lot more to me than it might to other people. I have a tiny green bird named Seamus, and when I say tiny, I mean he weighs no more than two ounces. Every day we have a routine. Every morning my mom gets up around 9:00 and lets him out of his cage and refills his food and water. Then around 10:00, the two of them come and help me out of bed. My mom has to help me with some stuff in the bathroom, so while we do that, Seamus sits on my shoulder and tries to kill my toothbrush and my hairbrush and the cloth I use to wash my face. One of his many nicknames is Murder Bird.

After we take care of that noise, I need help with the toilet, and since I can’t stand on my own, my mom has to pick me up (it’s a good thing I’m tiny). While we’re doing all of this Seamus climbs around all over me. This morning however, I had a near panic attack. I didn’t realize how far down on my back he was, and I leaned back into my wheelchair too quickly and almost squished him. He’s totally fine, but it scared the crap out of me, and I cried about it, admittedly, a lot.

After we were finished with all of that we went down to the kitchen, I calmed myself down and we all had lunch. Then my mom had to go out, so Seamus’ options were to hang out with me or go in his cage. He decided to hang out with me. He took a nap snuggled up close to my neck, and now he’s preening himself on my shoulder. I was super worried that he’d be mad at me or scared to be on me. I’m finding that the forgiveness of a tiny two ounce bird really means a lot.

Because in my world guinea pigs can fly!

Stop Telling Us We’re Inspirational!

I remember reading a post by a mother a while ago, talking about her disabled child. Basically her post was saying that it annoys her when people say her child is “amazing” because they can do interesting, “normal” things despite their disability. At the time I think I agreed with it because it was well written, etc, but I didn’t really think much about it.

Last night I read a poem by a 16 year old girl who was paralyzed from the chest down. The person who posted it explained how she got paralyzed, etc, and then said how amazing it was that she managed to live a happy, fairly normal life despite her disability.

I have decided that this kind of thinking irks me. I don’t often think about it too much, but I do sometimes get comments about how inspirational I am for doing seemingly standard things. In fact, my dad sometimes gives me the “you’re amazing” talk. Don’t get me wrong, I do think I’m amazing and wonderful, but it’s certainly not because I can manage to be happy. I just like myself.

I have probably mentioned this before, but I’ve been disabled since I was born. I have Muscular Dystrophy, which makes my muscles week, and for some reason I can’t extend my arms or legs all the way. I also have epilepsy, which is mostly taken care of by my medication, but I still get symptoms occasionally. I have pretty terrible eyesight, too. Quite frankly, none of this has ever bothered me too much. I mean, it’s inconvenient in some respects, but I have far more important things to worry about.

I’m not special because I can write coherently or read stories, or critically analyze movies. I’m not special because I’m good at racing games. I’m not special because I’ll get up and sing in front of people. I’m not special because I learned to play guitar upside-down. I’m not special because I’m going to college. I’m certainly not special because I can manage to be happy. I choose to be happy. There’s nothing particularly different or amazing about that. It’s not that hard. Anyone can choose to be happy. It just makes life easier.

Saying that “people like me” are special because we can manage to be happy and functional is actually a bit insulting. It implies that we should pity ourselves and let the world run our lives for us because we have the right to. I have no interest in doing that. I sometimes pity myself. It’s true, but it’s certainly not because I can’t walk. Sometimes I wonder why I haven’t ever been able to get a date and why it’s so difficult to get gigs as a newbie musician. Then I stop worrying about it and move on because worrying solves nothing. And yes, I do complain about some of that stuff on this blog. This is where I do my worrying about it.

We’re just people. Maybe we look a little different and our bodies or our minds work differently, but at our core we’re no different than anyone else. I met a man this past semester who had no arms and no legs. He seemed very nice and I didn’t get to talk to him very much, and it only occurred to me after our conversation had ended that he was somehow driving his wheelchair with no arms or legs. I asked his sister about it because she is a classmate of mine, and she said because he lost his limbs when he was young, he was able to develop muscles in his elbows that most of us don’t use. I thought it was cool because I learned something new. It’s a testament to how adaptable humans in general are. This man was not inspirational to me, however, because he wasn’t trying to be. I liked him because he was friendly and interesting. He was just a normal person to me because I expected him to be.

Don’t get me wrong, I’m glad some people can find “people like me” inspirational. They would be wrong, but it doesn’t cause them too much harm. What I would ask is that they keep it to themselves. Be our friends. ask us about what we’re interested in. Argue with us about philosophy. Treat us like you would treat anyone else. Just stop telling us how amazing it is that we’re happy.

Because in my world guinea pigs can fly!

The Things I’m Thankful For

I know Thanksgiving was a couple days ago, but I haven’t had time to get to a computer until now.

My aunt did this “month of gratitude” thing where she had to post something she’s grateful for every day through the month of November. I thought I’d do my own list and share it with you guys.

1) My family… the huge, insane, lovable mess that it is
2) My friends… for introducing me to lots of good movies and music and for always being there
3) Music… for getting me through every allnighter and making me happy
4) Movies… because they are wonderful. Nuff said
5) My faith in God… I don’t know where I’d be without him
6) Coffee
7) Chocolate
8) My bed
9) The wood stove in my basement
10) Cute animals
11) My education
12) My mom’s accessible car (even though it’s falling apart)
13) My wheelchair
14) Electricity
15) Humor
16) My insane dreams
17) The ability to use language
18) The ability to make music
19) The ability to help others
20) Forgiveness
21) Love
22) Art (literature & visual art)
23) My medication
24) Technology (even though it insists on fighting me most of the time)
25) Video games
26) My eyesight (as crappy as it is)
27) My hearing (because it’s awesome and therefore I’m super good at eavesdropping)
28) Traditions
29) The sacrifices people make for me and for each other
30) The absurdly satisfying clicking sound my keyboard makes when I type

Because in my world guinea pigs can fly!