Tag Archives: Human

The Lady At The Bank

On Friday I had to go to the bank with my brother and mom. My mom was helping my brother get a credit card, and I just happened to be there because we had just got lunch. An employee took my peeps to his office while I hung out in the waiting area. Admittedly, I have a habit of going off on wild adventures in my head when I’m bored, and I can go very far away given enough time.

While I wasn’t on a wild mind quest this time, I was sort of staring into space and making patterns with the tiles on the floor. There was another man sitting in the waiting area, and another employee came over to help him with something. She took him to her office, but had to come back out to do something. When she noticed me, she asked my mother in the nearby office, “Is she with you?” The employee was standing right in front of me. I didn’t hear her, but my mom answered in the affirmative. Then the employee looked at me and said, “Just checking. Hi.” I said, “Hi,” and she walked off.

What I wanted to say, and what I should have said, is that when you see someone in a wheelchair, regardless of where they are or how odd it might appear they are acting, you don’t ask someone in another room if that person is “with them.” By doing so, you are making assumptions about a person you don’t know, you are being rude, and most importantly, you are stripping that person of a degree of dignity. It is exactly like seeing a dog and asking a person nearby if that dog is “with” them; if that animal belongs to them.

That employee was ignorant, and I can forgive ignorance. I want to make an attempt now to correct some of that ignorance. Only about fifteen percent of the world’s population has some form of disability. These range from anything from psychological to physical. Obviously physical disabilities are much more noticeable, and unfortunately, physical disabilities often do come with issues like Downs Syndrome. That means that people sometimes automatically assume that this is the case, and assume that people with physical disabilities will not be able to communicate with or understand them.

I want to touch on another issue, too, however. A huge mistake people often make is essentially doing one of two things to people with intellectual disabilities: things like Downs, Autism, etc. They either have a tendency to treat the vast majority of them as though they were less than human, or if someone with one of these issues does something that seems “normal,” they are turned into a hero. At worst, people with intellectual disabilities are often the victims of cruel humor. Though we preach that this is wrong, our society still accepts it because many assume that the people being mocked don’t know they are being mocked.

In any situation when interacting with someone with any kind of disability, start by assuming the best. Recognize that the person in front of you is firstly, a stranger whom you know nothing about, and secondly, they are likely capable of much more than you might assume. Understand, too, however, that every human being perceives the world in their own individual way. I, for example, do not like crowded areas because I am always sitting and I can get somewhat claustrophobic if I have many people standing around me. This is also due to the fact that I’m simply introverted. Another person in an almost identical situation as me might love crowds and large parties simply because they are extroverted.

Lastly, I have noticed from time to time, that disabilities can put people on edge. I can only attest to this from personal experience, and it happened more when I was younger. I think people were sometimes afraid that they would offend me if they said the wrong thing or asked the wrong question. Again, this is a subjective issue, but I am not offended by questions about my wheelchair, or my disabilities. I’m not offended when people point out that I’m “driving” badly, because sometimes I’m not paying attention, and I know I drive badly. Lastly, and this is particularly for parents: don’t pull your kids away when they’re curious about a wheelchair. It’s good for kids to be curious, and it’s good for someone like me to be able to assure them that I’m just a regular human trying to survive like everyone else. I would like to emphasize that. I am weird and quirky, but that’s because I’m a writer, not because I use a wheelchair.

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Whirlwind Weekend

I haven’t given an update on our house in Naples in quite some time. Construction is well underway at this point. Ironically, that means it’s currently very inaccessible, but that doesn’t really matter because there isn’t much to see except for the beginnings of what will eventually become rooms, and the outline of what will soon be the beginnings of a two-car garage.

We spent some time there yesterday because my dad was installing a security camera so no rotten potatoes decide to do anything stupid while we’re away. There are work people there most of the time anyway, and it’s a pretty rural area, so the chances of that happening, in my mind, at least, are slim.

We took a break from that for a little while and went to church with my godparents who live up there, then to dinner at one of our favorite places, which was once a gas station. You can still fill up your car there, too, which is kind of an interesting idea. I don’t know how often people use the station and stop for food, but if it gets the owner a little extra business, then good for him. We’ve met him a couple of times, actually. He’s nice.

After all of that, my godfather helped my dad, and my godmother and I made inane talk about music and cute animals while we waited for them to finish. It took them a while. My mom and my brother had gone with my aunt and cousin, and several of my mom’s cousins down the Saco River on tubes. apparently it was cold, and there was no flow in the river because there hadn’t been enough rain, so they had to swim quite a bit.

Tonight, my parents, brother and I are going to see Beck in Boston. Because Beck does everything under the moon, I have no idea what to expect. I slept really late today because I felt like it, and spent the remainder of the afternoon in my yard, praying, and hanging out with my bird. It was lovely.

Something I realized, which I have heard priests say, is that I actually am happiest when I’m just spending time with God. I am happy when I’m working on my book (which often involves praying, anyway), or when I’m watching a movie or show with my dad, but I actually am happiest when I’m just staring into space, talking to the Lord. I think I’ve just never taken the time to actually think about it. It’s a different kind of happiness. I think I sort of realized it, but didn’t know how to express it in words when I took communion yesterday.

There’s this phrase that comes up in a lot of Christian hymns and songs: “I am yours and you are mine.” That confused me for a long time. How could He be mine? I’m a language geek, and I find myself reflecting on the fact that, when talking about God, we rightly use the possessive pronoun, and say that he’s my God; my Father; my Savior. God made Himself known to us, and He wants a relationship with us. He’s with me while I’m praying, and if I let Him be, He’ll be with me at the show tonight, because that’s what Jesus was like. He went to the Wedding at Cana. He had dinners with sinners–so, ordinary people. He had fun, and he probably enjoyed awkward, but fun conversations. Tonight we’re going to eat burgers and enjoy very weird music.

Because in my world guinea pigs can fly!

Waiting

Holy Saturday is an awkward day. It’s a weird time between remembering something awful, and anticipating something awesome. I never quite know what to do on this day. I know what to do on Good Friday. Yesterday I woke up at ten thinking, “What would be happening right now?” Then I realized that Jesus would have already been hanging on the cross for an hour. I’m an emotional person. I worked on my book yesterday, but I cried, too, and incessantly looked at the clock until three. I prayed, and thanked him, and started to figure out how magic would work in my universe. Last night I think I figured something out.

On Thursday I watched the Passion of the Christ for the first time. I thought I would cry, but I didn’t. I was just horrified. I’ve tried for a long time to figure out what he sees in me; why he loves me; why I’m worth saving to him. Ultimately, from a human perspective, there’s some lovable, endearing stuff about me, and I know that, but none of that is why he chooses me. He chooses me because I exist. He saves me because he loves me. He loves me because I’m his. Nothing about me makes me more or less worth it. I’m infinitely worth it to him no matter what, simply because he made me.

Still, I’m left with the question. What do I do today? The only person I’d be more than willing to bet knew for sure that Jesus would rise from the dead on the first Easter was his mom, so I wonder what she would have been doing. I imagine she would have been trying to help the apostles get through this day, mainly. Still, even knowing what was going to happen, she did have to watch her son tortured to death just a day earlier. Even for her, I imagine today would have been a day of weird mourning and anticipating. My grandfather died several years ago from Alzheimer’s. It was a long, slow death, and I prayed that God would end his suffering. I don’t know if that was the right thing to pray, but it was honest, and it was sad, but also relieving when he passed. It could only have been relieving because of the hope of Heaven.

I guess that’s kind of what this day is for. This day is for hoping. I never knew my other grandfather. My mom’s dad died of cancer when I was just a year old. I didn’t even know my dad’s father very well because he was quiet, and started getting sick when I was pretty young. Because I hope for Heaven, I look forward to the day I get to hang out with both of them, and other family who I’ve never even known. I’m going to the Easter Vigil tonight. It starts in darkness, but we light up the church passing the fire of one candle to the next, and tonight we get to announce that Christ is risen. Until then, we wait, and we hope, and until he comes in glory, we wait, and we hope.

Because in my world guinea pigs can fly!

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

Thank You!

Yesterday I reached three hundred followers on this blog. That’s pretty cool. I’m still kind of amazed considering how young this blog really still is. I’m especially grateful for those subscribers who don’t share my religious or political beliefs. It’s a testament to what I truly believe–that we can all put that stuff aside and just be friends. One thing we do all have in common is that we’re only human. Thanks for reading, and thanks for being human with me.

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!