Tag Archives: Advocacy

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.

“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!

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!