Tag Archives: Disabilities

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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What I Know

It’s taken me a long time to write this post. I’ve been feeling for a long time that God wants me to tell people about him. I didn’t want to tell people what they’ve probably already heard a thousand times. This is simply what I know about God.

I know that God answers prayers.

Truthfully, he doesn’t always do this in the way I expect or the way I want. The cliche is true. God works in mysterious ways. Sometimes I have to wait, and sometimes I even forget about what I prayed for, and he answers anyway. I try very hard to be a peacemaker. Because of that, I haven’t got into too many fights. I’ve witnessed some pretty deep resentment among people I love, though. I’ve prayed about it, and the problems have been resolved. God always provides. I have epilepsy, and while my medication prevents me from having full seizures, I still have symptoms. Usually this is because I’m too hungry or I’ve spent too much time on the computer, so most of the time I can get rid of them just by changing my behavior. However, sometimes it’s out of my control. In these situations, I often pray, and the problem often goes away. Sometimes I just need something small. I need to make sure I wake up on time or I do something stupid and get my wheelchair stuck and need someone to rescue me. There are so many examples I simply can’t list them all. When I pray for small things, however, God often answers those prayers almost instantly. I have to mention however, that sometimes God’s answer to a prayer is “No” because it’s the best thing for you. It’s also important to remember that God works in real time. God can make difficult, complicated things happen, but because they are difficult and complicated, they will take time–sometimes years. One example I do want to mention, though is that when I was in middle school, my cousin had Cancer. It was treatable, but it definitely wasn’t easy. One night he told my aunt that he really felt like he was going to die. I desperately wanted him to live, so I prayed hard, and soon after, things changed drastically.

I know his love is intense.

I was born with Muscular Dystrophy. Because of this, I couldn’t run around and play on the playground with the other kids when I was little, so God gave me a playground in my head. I constantly made up stories and characters and drew pictures and made up better reasons for why snow fell instead of what science told me. This playground in my head is always getting bigger and bigger as I continue to write stories and learn about philosophy and contemplate my place in the world. Eventually, however, I realized that my imaginary playground wasn’t enough. I am asexual. In short, I find sex repulsive. This was very confusing for a lonely high school student who wanted love and didn’t understand it. I thought I needed a boyfriend. At the time I believed in a god, but not necessarily a God one could have a relationship with, so I prayed that I would find love. In retrospect, I realized that a part of me, though not necessarily a conscious part of me, knew that I needed God. I was confirmed as a Catholic in the first few months of my Junior year. Though I had not exactly intended to, I kept going back to church for no real discernible reason. It wasn’t until October of my Freshman year of college that I knew he loved me. I went to a very Christian school and as a requirement, went to chapel services three times a week. It was the first time I had heard contemporary worship music, and that made something click. Still, I was lonely, but one night I prayed and the part of me that needed God somehow became conscious and I said “I love you” basically by accident. As soon as I said it, I felt an overwhelming feeling of love and peace.

Over the next several years I learned many things, though how I learned some of them isn’t entirely clear. It took a while for it to sink in, but I learned that Jesus loved me and had me in mind when he took on the sins of the world. He took on my sins, too. I learned that it’s not enough to love God. You have to trust him, and I do. I learned that God loves us no matter what, and he always will. Jesus hung out with people that his contemporaries literally wouldn’t talk to and wouldn’t even touch. He said that he didn’t come to condemn the world, but to save it. That means a lot. I learned that the more time I spend with him, and the more I come to know him, the more I need him. I learned that his love is unfair in the most perfect way. Most importantly, I learned that God made a way for us to literally see and touch him in the Eucharist, and this will last for all time until he comes back.

I know that God has a sense of humor.

If you had told me in my Freshman year of high school that I would be considering being consecrated to God, I would have told you that you were crazy. If you had told me that I would start going to Church every day, I would have told you that you were crazy. I didn’t know God. I didn’t like the Church. It was lame and boring, and Catholics were all old and annoying and judgmental. If you had told me that I was going to go to a Christian college and major in English, I would have told you that you were crazy. Even if you had told me what kind of music I would be writing, I would have told you that you were crazy. I wanted to be in a punk rock band. If you had told me I was going to write a novel, I would have told you that you were crazy. I tried twice and gave up twice. Among my closest friends, I am the only practicing Catholic, and I was the first to graduate college. I find irony hilarious. You would be laughing too, if you knew just how much irony I’ve lived through.

I know God’s voice.

Some people at my school said that they felt a connection to Jesus from the age of five. It took me literally twenty years and then some. I know God is infinite, and I know God is love. Love is patient, and love is kind. God has infinite patience. His sense of time is not like ours, but he still had to watch me wander around without knowing him for what, to me, was a long time. God’s call is not like a voice in my head. It’s more like I feel him pulling on my soul. I can resist. I can ignore him, but I don’t want to. At the moment I’m feeling the pull, I can’t always put it into words, but I usually can eventually. After I was confirmed I felt the pull, and it was like he was saying, “Stay with me, okay?” The pull has become more and more obvious as I’ve come to know him better. It’s not the same for everyone. He relates to everyone in the way that makes the most sense to them.

I know that sometimes God gives us more than we can handle.

You read that right. It’s a matter of trust. The month before finals in the second semester of my sophomore year of college was a nightmare. I was overworked and got very little sleep. On top of that, the dosage of my medicine wasn’t right and I was dealing with some nasty epilepsy symptoms. During that time I had one prayer: “Get me through this.” That year Tenth Avenue North released their album “The Struggle.” Through the month of April I practically had their song “Worn” on repeat. That song made me feel like I wasn’t alone, even though it’s about a completely different kind of struggle than what I was going through. The point is that I knew I couldn’t make it through on my own. I trusted God. It was my turn to say “Stay with me, okay?” and he did. I passed all my classes, and after finals, went home and slept. On occasion God has asked me to do the impossible. He has asked me to do things that I am terrified of doing. I’ve found that I can’t do these things unless my answer is “I’ll do it, but I need your help because nothing else is gonna make it happen.” If I don’t do the impossible for him, I often can’t do the simpler things that I want to do. This may seem unfair, but God wants what’s best for us, and he wants us to be happy. If we want what God wants, and if we do what he wants, we will be happy. This doesn’t meant that we’re robots. God has an individualized plan for each of us. We are all unique, and God uses and relates to all of us differently. He understands our quirks and desires and fears and preferences and works with us in the way that will cause the most good and the most happiness for us and for the people around us.

I know that God is emotional.

Jump to any part of Scripture, and you will find that things people do please God or make him angry. In the Gospels we see Jesus having fun at a wedding celebration. Later on, he gets angry at the people who were buying and selling animals in the temple. The night before his death, he stays up and prays because he’s afraid. God feels what we feel, and what we do matters to the Father who knows us and loves us more than anyone else ever could. He loves us even though we’re broken. He loves us despite everything we’ve thought or done, and he forgives everything. He’s willing to go to extremes for us because he wants us to love him back. To many, the story of salvation sounds unbelievable; crazy. To me it often sounds unbelievable and crazy. I don’t understand all of it. It’s not possible to. That’s the whole point of faith. God is way smarter and way more loving than any human ever. He gave us stories and metaphors and teachings in his Word, but he also gave us the Church so we would never be alone in our faith, and he gave us souls that will lead us to him if we allow them.

Nothing Between Us

I’ve always had different feelings when it comes to my epilepsy. When I was a kid it scared that crap out of me. It was unnatural. Something evil was in my head. What was happening? Why me? When I got medicine, it was like I had died and gone to heaven. My life had been changed. For many years it didn’t bother me at all. I never had seizures, and never even had any symptoms. Then in my Sophomore year of college–three years ago–it came back. I would have actual seizures, though not terrible ones (whatever that means). I sometimes lost control of my body. I was tired and angry, particularly angry at God. For a while, until we got it mostly under control, I was just scared.

These days my feelings are different. I have symptoms rather often, so it doesn’t scare me anymore. Being angry doesn’t really do anything either. I’ve asked God to heal me and to make it go away, and he hasn’t. I remember reading that Paul asked God to get rid of a thorn in his side. God said “no,” because it reminded Paul that he needed God. I think of my epilepsy kind of like that. I can often tell when I’m going to have issues, so these days I just think: “Okay. Whatever. It’ll only last a bit.” While I’m having issues I just try to pray, about anything, and often, I’m able to sort of “muscle” my way through it. Sometimes, if it’s bad enough that I can’t process language, I just try to focus on God in some way and wait.

I had a few minutes where I just had to wait earlier today, and I realized, that those are the only times when I just sit still. I’m not playing music. I’m not writing. I’m not listening to anyone or anything. I’m not even thinking about anything. Oddly enough, it’s the only time where there is literally nothing on my mind. It’s the only time where there is nothing between me and God: no weird thoughts; no distractions; nothing I have to do; no words.

I am someone who will prove that someone with Muscular Dystrophy can do X, Y, or Z. I absolutely love it when people assume I can’t do something because I love proving them wrong. I’m also kind of an impatient person. I wonder if God allowed me to have epilepsy as a way of saying, “Woh… slow down, kiddo. Don’t forget that I’m the one who made all this possible. Don’t let your ego get ahead of you. Don’t forget about me.”

Admittedly, I spend a lot of time in my head. As a result, thoughts about God sometimes take a back seat. Sometimes thoughts about spiritual things get confusing or complicated, so I just think “screw it,” and move on to the next thing. Sometimes God doesn’t make a whole lot of noise. He lets me mess up like a parent lets their kid mess up so they’ll learn. Honestly, I don’t know if any of this really has anything to do with my epilepsy, but I have to make it make sense somehow. It annoys me when things don’t make sense.

God can’t physically show up and bang on my door and say “Hey! I need you to listen to me for a minute!” I have to take the initiative. I be responsible and slow down. I have to take the time to read and figure out what God is trying to say. Sometimes I think he just wants me to stop and spend a little time with him, even if he doesn’t have anything to say. It’s easy to forget that God is a person, and it’s easy to forget that sometimes he just wants to be with his peeps.

Because in my world guinea pigs can fly!

Language And Culture

Over the past year or so, as I’ve been writing my book, I’ve been paying more attention to characters that are underrepresented in popular media. The first I noticed were people with disabilities. We’re hardly even on the map. Hopefully my novel will help fix that to a degree. The other I’ve noticed are “normal” people who happen to be Christian. What I’ve seen in TV shows and movies is that Christians are generally represented in two ways. The stock Christian characters are almost always either Bible beating, ignorant jerks, or intellectually stunted, and thoroughly content.

When I was a little kid, my dad told my brother and me lots of stories–stories he made up, old Greek myths, as well as stories from the Bible. I learned about Echo and Narcissus at the same time I was learning about Adam and Eve and Noah. I grew up on mythology, science fiction, and fantasy, and I made it through the public school system intellectually unscathed. I learned (or at least tried) about Chemistry, math, biology, evolution, and physics, and I don’t question the facts regarding those subjects. The point I’m trying to make is that the largely agnostic and atheistic culture has a tendency to stereotype. I want to see Christian characters who are smart, funny, and nice, because a lot of us are.

I have a friend who is very into social justice–women’s rights, LGBT rights, race relations–if there’s a social disparity, she knows and cares about it. I admire her for it, but at the same time, she’s so militant and angry about it sometimes that it can get tiresome. Last night she was talking about how there is so much corruption in our country’s justice system, regarding racism and police violence. She has mentioned before that she is very wary of people in positions of authority, especially when those people have access to weapons. To be fair, at least right now, I feel like the people in authority in our country are kind of useless, but I don’t distrust them per se.

It’s easy to stereotype, and we all have a tendency to do it. While some authority figures are corrupt and untrustworthy, some, in fact I’d say probably most, are good people. The same can be said for Christians. People notice the jerks and publicize them because it’s easy and because they make the most noise. The truth is that most of us are reasonable and nice. I would just love to see a moment in a movie or TV show where something good happens because a Christian character was kind to someone or gave them advice, or because they prayed. It doesn’t have to be corny. It can be done artfully.

I will say that sometimes an issue I have with Christian culture is that it has a tendency to lag behind the culture of the Country in general. This is partly out of necessity. We can never deviate from the core teachings and beliefs of the Church, but we need to be more willing to adapt without compromising our faith. We’ve done it since the Church began, but culture changes with such increasing speed in the 21st Century, that it’s harder to keep up. One thing that I think should be an easy fix that the Church has largely neglected, however, is the language we use. For example, I still pray the ye oldie version of the Lord’s Prayer because that’s how I learned it: “Our Father who art in heaven, hallowed be thy name…” I mean it when I pray it, but it’s the only time I talk like I was around when Shakespeare was writing Hamlet.

How a person expresses him/herself has a large impact on how that person and their ideas are viewed. Many Christian ideas are considered cliche or uncool because we’ve been using the same language and motifs to express our beliefs since the beginning of time. It’s why I often can’t listen to Christian music outside of worship for an extended period of time. Artists just recycle the same stories, images, and metaphors over and over. This is due, in part, to the of fact that many ideas and images are taken straight from the Bible, which again, is relevant in a worship setting, but isn’t going to be helpful when it comes to bringing people to the Church, which I’m much more interested in doing, at least when it comes to music.

However, I think there aren’t many actually interesting Christian characters in popular movies and TV for similar reasons. I think part of the issue is that Hollywood at least is largely secular, and the people who make the best movies honestly just don’t know how to write good Christian characters. What would that character be like? Maybe they’d be like me–a dorky writer who  plays pen and paper RPG’s and teaches religious ed once a month. Maybe they’d be a physics teacher who chose that job to try and expand his students’ intellectual horizons. Maybe they’d be someone with psychic powers, trying to figure out if using those abilities encroaches on God’s authority, while at the same time, trying to save the world from certain doom.

A character’s religion does not dictate their entire personality. In terms of characteristics, it is equal to their interests, their profession, their education, their upbringing, and everything else that makes a person a person. It is another factor that makes them unique. I bring this all up because I’m tired of seeing Christian characters that are nothing more than the designated annoying Christian character. I just want characters that are interesting human beings who happen to believe in Jesus, just as I want to see more interesting characters who happen to have some kind of disability. I’m tired of factors like these being defining characteristics above all else. I’m tired of annoying stereotypes that put me in categories I don’t belong in.

Because in my world guinea pigs can fly!

Something You Should Know

I’ve written a few posts recently that have made it sound like I know Jesus super well and I know exactly how to run my life. Neither of those things are true. Most of the time I’m fairly self-centered, and a lot of the time, I forget about spiritual things until I go to bed. I pray before I go to sleep every night, but to be completely honest, a lot of the time it’s only out of superstition and habit. I pray during the day when I’m worried or nervous about something, but a lot of the time, I find that my prayers are selfish. The fact of the matter is, I think I am selfish. I want to be kind and helpful to people, but I’m distracted by video games and homework and friends and classes and commuting and relaxing.

Don’t get me wrong, I know I am blessed to have been born in the U.S. to a fairly wealthy middle class family. I don’t deserve what I have, but I am exceptionally thankful for it. I can’t begin to fathom how lucky I am. I’ve never seen war or extreme poverty or terrible sickness–not first hand, anyway. The point is that I get so wrapped up in my own life to remember those who are less fortunate than me.

I also know that I’m hard on myself about this stuff. I have done good things for other people, and honestly, I think I’ve made a real difference in some cases. I was part of creating an advocacy program for young adults with disabilities, and I’ve seen it make a big difference. I raided around $400 and did the Walk for Hunger last year. I know my music has inspired some people here and there. I just wish I could do more. I go through periods where I feel like I’m being lazy and I have too much free time. The trouble is, I don’t feel like I’ve made a difference where I want to.

Two things that I feel passionate about are mental illness and war. I can’t fix either of those problems, but I can pray about them, and I know I don’t do nearly enough of that. My other problem is that I am ridiculously disorganized. I’m not good at setting up fundraisers or demonstrations or even little prayer groups. I’m not a good leader.

However, I can do this: I have around 250 followers on this blog, and I can ask all of you, in whatever way feels right, to pray for the victims of any kind of violence: that they would be safe, that they would find places to go to or ways of defending themselves, and that the people causing this violence would change.

I also ask that you would pray for anyone suffering from mental illness, that they would find healthy ways of dealing with it, and that they would find support in loved ones.

Because in my world guinea pigs can fly!

Logic, Faith, Homosexuality And World Peace

I don’t know if I’m exactly Catholic anymore because I’ve deviated from quite a few beliefs that are traditionally Catholic, but I still pay attention to what happens in the Catholic Church, and I really like Pope Francis a lot. I guess it’s just nice to have a professional opinion to go off of. I especially like what he said recently about gay priests. He said that he cannot judge gay men who chose to remain celibate in the pursuit of God. Apparently he still does not condone gay marriage, but it’s certainly a step in the right direction.

I know it’s not exactly orthodox, but I believe that gay marriage is just as sacred as a marriage between a man and a woman. In almost every way, it’s the same. 2 people love each other and vow to be together in sickness and in health until death do they part. True love, I believe, transcends gender. If homosexuality was dangerous it would be another story, but there’s nothing dangerous about it. The biggest problem about it is that it has been stigmatized into something that must either be hidden or eradicated, which only causes hate and violence.

At one point in time it was believed that people were disabled because either they or their parents were sinners. I recently went to a presentation by some students at my school about what they, some professors and I believe a couple doctors thought about disabilities. Before a discussion session, they showed a video, and one professor that I actually had the semester before said she believed that people have disabilities as a physical representation of the evil in the world. People like me are just randomly picked to carry the burden of the rest of the world? I think not! People like me are brought into the world to make life a bit more interesting. My disability has brought me closer to my family and friends and closer to God. In fact, I probably wouldn’t be a Christian if it weren’t for my circumstances. I might not even be a songwriter. Everyone is made a certain way for a reason.

It is still believed by some that homosexuality is a disorder, therefore, the same stupid argument could be applied and therefore, I think that homosexuality is no more sinful than Muscular Dystrophy. God makes each of us special, and I think that if he didn’t want there to be homosexuality, he wouldn’t let it exist. I also believe that sexual orientation is not a choice, and therefore it is not a matter of free will. If it is not a matter of free will, it can’t be inherently sinful. I like boys, and I would never be able to convince myself that it’s wrong or that I like girls. It’s just not how my brain works. It’s the same for a friend of mine, only she likes girls.

Furthermore, homosexuality is not a problem that politicians or the church should need to worry about. They need to be focusing on real problems like terrorism, hate, poverty and starvation. If people were just willing to accept each other for their differences, they would see the similarities among all people and their capacities for innovation and love and they would work together instead of bickering over technicalities and tiny details.

Because in my world guinea pigs can fly!