Tag Archives: Personal Value

Never Left Behind

On the way to the studio this past week I realized something. A little over a year ago, on a Wednesday night, I picked up my phone to look at Facebook or something equally as pointless, and the words and melody to my song “Heart Of Love” popped into my head. I remember it was a Wednesday because my studio sessions are usually on Thursdays. We were about halfway done working on what I expected to be a single when I came in with my new song, knowing it was good, and knowing we had to do something with it.

Twelve songs later, I have an album, but I wouldn’t have it if God hadn’t dropped “Heart Of Love” on my head. Something every Christian prays at some point in their life in one way or another is, “Lord have mercy on me.” What I didn’t realize was that this album is an answer to that prayer. I realized this because unfortunately, our society has a few specific marks that one generally must have by about their mid twenties that qualify them as a “real” adult. What I mean by this is that our society has determined that every person has a base value, and depending on what “marks” one has by a certain age, one is determined to be more or less valuable; more or less “real.” These marks tend to be 1) if one has earned a degree and has at least a relatively well-paying job 2) one is confident and chaste as a single person (oddly enough for our culture), or they are in a steady, healthy relationship 3) one has their own apartment, or one is paying rent to their parents with the expectation and prospect of eventually moving out.

Given my circumstances, I have none of these “marks.” While it’s true that I am confident and chaste as a single woman, because it is not entirely by choice, by the estimates of our society, it seems not to “count.” This leaves me with a dilemma. I know my worth as a child of God. I have also internalized my perception of how the world sees me as a disabled woman. I know that I will not move out of my parents’ house, at least in the near future. Because my art and my skill at writing doesn’t make a tangible profit, I don’t have what society considers to be a “real” job. There have been times when it seems I have been regarded with pity or condescension. I know that this is how I have perceived things, and my perception can be faulty. Nonetheless, this gets internalized; I look at how I don’t have these “marks,” and I see myself as less “real;” less valuable than the friends and acquaintances who have these “marks.”

About three weeks ago, I got started working on an article that I initially did not want to write. I started the writing and research, nonetheless, because I felt that the Lord wanted me to write it (it’s still in the works). On Friday, I was hit once again by the fact that  because I don’t have a paying job, in the eyes of society, my work, despite the fact that it is work, doesn’t really “matter.” It’s “cool” that I write music, but because I’m not a well known songwriter or a touring artist, the compliments are sometimes perceived to come with a note of pity or condescension, whether it’s meant or not. I wrote in my last post about how our culture fosters a tendency to regard others with skepticism, and I admit, my perception is that of a skeptic.

I prayed about this before going to the studio, and it hit me that the world may not see my work for what it’s worth, and I may not see it for what it’s worth, but the Lord does. The Lord said to me, almost audibly, “What you write matters to me.” I recently wrote about the Let It Go Box, which I’ve decided to rename the Redemption Box. In short, you hand something over to God, and let Him take control of it and redeem it.

I realize that over time, though we never really talked about it, I gave Him the blog a long time ago. While working on what I thought would be a single, my friend and I prayed; we handed it over, though the Box wasn’t a concept at the time, and that single became an album. Over the past year, I’ve wondered often why God chose me to work on what I know is really His project. I realized that this project didn’t need to exist; He doesn’t need it. He doesn’t need my blog or my music to save the world. He gave me things to write because that is what I’m capable of doing, because I’m good at it, and because He cares about me. He gave me something to do because He knows I love Him in a way that only I can, and because I want to help.

This is His mercy. Mercy is when someone sees another suffering, and does something about it. He sees when others devalue me, or when I devalue myself, and  He asks me to write something, or helps me write a song, and in doing so, He reminds me that what I have to say matters. He reminds me that He is my God, He loves me, and He will never leave me behind.

“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!