Tag Archives: Perception

Human

I was at a seminar at our church last night about the humanity of Christ. Obviously there’s a lot to talk about there, but I came away from it with one particular conclusion that I thought I needed to share. I’ve been slowly making my way through the Gospel of Luke, and I’ve been reading it differently than I normally do. It’s hard to explain, but it’s like I’m actually hearing Jesus talk, instead of just reading what he said. Sometimes I’ll reword the lines on the page just slightly so I can “hear” it better, and in doing that, I’ve come to understand Jesus, and therefore, God’s personality better.

I used to read certain things Jesus said as if he was being impatient or snarky. When I was just starting to read the Gospels on my own, there were a lot of times the words, translated into English, on their own, made him sound kind of like a strict, emotionless teacher and not a whole lot more. I’m thinking of the many times he tells people they have “little faith.” On the other hand, he tells his disciples that someone with faith as small as a mustard seed could move mountains. That can be confusing. I’ve discovered that, yes, I do have little faith, but God answers my prayers in amazing, and often unexpected ways.

Last night in the seminar we discussed human nature in general. Human nature is the interaction of a person’s body and soul. However, our human nature is flawed by original sin. Christ’s is not. He reveals to us, then, not only who God is, but also, what humanity is really meant to look like. In essence, I think, he reveals to us the truth that we were made in the image and likeness of God.

The final and most important conclusion I took from the class last night was that, yes, God loves everyone no matter what, but what I think most, including myself, neglect is that he wants desperately for us to love him back. This is evident most in the Old Testament. Our priest explained something to me after the class that I hadn’t understood before. What we perceive as “God’s wrath” isn’t exactly God “reacting” to what we do, but is a consequence of us straying away from his love.

Because in my world guinea pigs can fly

“Me Before You”

I just read a review of the book Me Before You. I had never heard of it before, and the only reason I read the review was because a friend of mine posted it and the title of the article sounded interesting. Apparently there is a movie adaptation coming out in the near future, and based strictly on the plot presented in the article, this story sounds idiotic and evil. I don’t use the word “evil” lightly.

It’s supposed to be about a romance between a quadriplegic guy and his caretaker. He was paralyzed after being hit by a motorcycle and now hates his life. Apparently it is also over-emphasized  how people see and treat him differently. People are invariably awkward or uncomfortable around him. What’s even more problematic is that for one thing, he values himself so little that he is suicidal, and refuses to pursue what could be a loving, fulfilling relationship. It seems to me that he is largely portrayed as a burden or an object–at best, someone to be pitied and nothing else.

Normally I wouldn’t judge a story before I’ve seen the movie or read the book, but this really makes me angry for so many reasons. I was born with Muscular Dystrophy, and I developed epilepsy when I was eight, so my situation is different than that of Will’s (the character in the book), but the problems arising from this portrayal relate to disability in general.

I think it is true that the world sees people with disabilities differently. Sometimes people do pity us. Sometimes people are awkward around us. However, I noticed it a lot more when I was a kid. My peers were awkward. Sometimes I was shunned or excluded from things. However, I don’t think mature adults do this. Maybe it’s because I’m more comfortable with myself, but most of the time I don’t think people even see the wheelchair. They just see me. Often little kids look at me funny because they’re curious and they don’t understand, and I’m not offended. Their parents often try and get them away, so I make an effort to talk to them and act like a normal human being.

The fact of the matter is, disabilities are not something to be pitied. It’s just different. I can’t walk. So what? I am the first of my friends to graduate college. I’m the only one of my friends to have written and published music. I can write. They can’t. After reading the article this morning, I realized something else. If I was paralyzed, I’d have to be even more creative. This spring I took a few months of violin lessons. I don’t play violin the “normal” way because I can’t extend my arms enough. My dad made me a metal bar that fits into a hole in the side of my wheelchair and bends over my legs. I rest the violin upright on the bar, and play it kind of like a cello. My favorite thing is when people tell me I won’t be able to do X, Y, or Z, because I love to prove them wrong. I would love to hear about some of the creative things people with other disabilities have come up with.

I also love the question: “Do you mind if I ask…?” No one knows how to pose the question. They always trail off. I don’t know why, but I like telling people what Muscular Dystrophy is. Then I abruptly change the subject because my disability does not define me. This actually touches on a broader issue. I think, too often, people let small things define them. They sometimes put far too much emphasis on their own sexuality or the color of their skin or their gender or what have you. They do this because the world has done it to them for so long that it’s become second nature. It’s become their defining feature. I recently told my dad that when I was a little kid I hated the question “What do you want to be when you grow up?” I never had an answer. He said they asked because they were trying to put me in a box.

Our culture loves boxes, and they hate it when one box doesn’t comfortably fit in another. I am not primarily a disabled person. I am not primarily a woman. I am not primarily asexual. I am not primarily white. I am all these things, but I don’t really care about them. What matters to me is that I write well and that I love people, and that means all people, in a real, significant, tangible way. It matters to me that I’m an optimist in a largely pessimistic or even nihilistic culture.

The fact of the matter is, my disability makes certain things difficult. It makes some things impossible. That does occasionally bother me. Because of my MD I will never be able to live on my own. Because of my epilepsy I will most likely never be able to hold down a “regular” job. That’s fine by me. It’s all the more reason to write a seriously awesome novel, followed by many more. Most of my main characters have some kind of disability. I don’t focus on those. I focus on their strengths and their personalities. My story is about how a diverse group of people work together to dismantle a very problematic, illegal government program. The problems presented by Me Before You are all the more motivation to finish this thing and knock it out of the park.

Lastly, I want to focus on something that is of utmost significance. God made me who I am. God made a Katie with disabilities. To tell the truth, I think my faith is much stronger than it otherwise would be because of this. It makes me realize how much I need him, and it makes me realize how close he is to me. It makes me realize how much he loves me and how much he loves all of us. I know for a fact I’d be a very different person had I not had my personal complications. I would probably have different friends, and I might be interested in different things. I’d probably be more athletic. I can’t even imagine all that would be different, and if I could see that version of myself, there’s no guarantee that I would like it. I like who I am now, and if I were offered a do-over, I wouldn’t take it.

To anyone reading this who feels like disabled people should be pitied: Don’t! If you pity us, you obviously don’t know us.

To anyone reading this who feels bad for themselves because of their disability: Don’t! Seriously! It’s a giant waste of your time! Be creative! Be productive! Be happy! There is always something to be happy about! Always!

Because in my world guinea pigs can fly!