Caught! Or, an unfortunate narrative told from a heart between two wheels

Recently, (as in two months ago), I was the extremely lucky person who got to display her artwork at the Octagon Center for the Arts in Ames. It was on display for two weeks, and I have been bugged by my friends who didn't get to see it (actually, just one person) to put up photographs of it on facebook. I figured my blog might be a more appropriate place.

You are looking at a 36 feet wide mural made of black and white paper. It is rather violent (just warning you).

My artist's statement is below...

Caught! Or, an unfortunate narrative told from a heart between two wheels

Hannah Soyer

           

This piece was inspired by the artwork of Kara Walker, a contemporary African American artist who works with silhouettes and black paper.  Her work deals with African American females and the exploitation of them by society, whether in the past or present. Because she herself is an African American, she is able to create some very emotionally charged and violent work without being questioned too harshly. Incidentally, I chose to work with the same style, format, and materials, but in regards to females with disabilities. Like Kara Walker, I think I was able to “get away” with this work because I myself have a disability.

All of the images shown in my piece represent horrors realistic of having a disability and being a female. Some of these I have experienced myself, others my friends have gone through. Some are merely reflective of facts and statistics, like how disabled children are 3.8 times more likely to be physically abused, 3.1 times more likely to be sexually abused, and 3.9 times more likely to be emotionally abused than their non-disabled peers.

The overwhelming idea expressed in Caught! is death, which I believe to be something everyone struggles with, no less so if you learn to face the idea of your own mortality every day.  When I was a freshman in high school, a friend of mine passed away due to complications with her own disease, a form of my own. The knowledge that death is always lurking is both terrifying and liberating at the same time. Terrifying, because you realize that nothing can ever be taken for granted, and liberating, because you suddenly have permission to live and be yourself.

I don’t pretend to have included all the horrors females with disabilities have gone through in this piece, and I certainly don’t pretend to know everything about the ones I have expressed. I only know what I myself have experienced. I call this piece Caught! because it is, in a sense, a frozen piece of time, an instant where so many crimes and evils are about to be committed. You, the viewer, have arrived, and not a moment too soon.

2012 Families of SMA Conference

My fellow SMA friends and I

Before I embarked on my final year of MDA camp (Muscular Dystrophy Association), my family and I attended the Families of SMA Conference in Minneapolis. I hadn't been to one since about 4 years ago, so suddenly I was no longer considered a "kid," and chose to go to sessions that looked interesting to me (in the past, I had hung out in the kid's room where we did various crafts and games, or wheeled around the hotel with my fellow SMA friends).

For those of you who are not familiar with a conference of any type, in particular a Families of SMA conference, it is basically a large gathering of Families of SMA members from around the world. There's a ton of families, but then there's also all the researchers who come together and discuss their new scientific findings which each other. Most of them dress nicely and have glasses, as researchers should (Ok, probably only half of them actually wear devices to help their eyesight).

Every day there are a bunch of sessions for the families to attend. When I was younger, this was something only my parents did, but now, I considered them to be actually somewhat interesting. Of course, I still wheeled around the hotel with my friends in my free time. One night, me and my two really good friends (both of whom have SMA as well) decided to go through the dairy queen drive through in our wheelchairs. This was something I have done previously in the town that I live in, and it has never been a problem. I guess Minneapolis is different.

My friends were a little unsure about this, so I showed them how it was done by driving right up to the order box thingy and told the guy our orders. There was, I believe, only one car ahead of us. When we got to the window to pick up our orders and pay, a guy looked out at us and said "Wheelchairs? What the heck?" It was quite funny. He probably had never seen a person in a wheelchair before (he looked the type, if you know what I mean).

We waited for our order, giggling quite a bit, until another guy came up to the window and looked out at us. Pinned to his black DQ uniform was a badge that read "shift manager." Oh dear. He informed us, much to our dismay, that they weren't allowed to serve people walking through the drive through, and that we would have to come inside. We sent in my friend's helper to get our stuff.

The really ironic thing is that when she walked in and asked for the order, the guy said "Oh yeah, I gotta go get it it's right by the drive through window." Literally, all they would have had to do was extend their arm 2 feet through the window and we could have had our ice cream. Oh well.

But the sessions. They really were quite interesting. I attended one just for adults with SMA (I was the youngest person there) and learned a lot of things. There was one woman there who had a five year old daughter that she had birthed herself, and a grandma who had two kids herself as well. This was pretty amazing to me. I talked to the mother of the five year old after the session and she said that I took awhile to find an obstetrician who was willing to go through the pregnancy with her because they didn't have faith that it was safe. She did finally find one, though. Also, because of the muscle weakness around our spines, people with SMA usually have scoliosis or small, twisted torsos. I asked her how she did with carrying the baby, because her torso was so small. She said that her baby adapted to her body quite well, and ended up going to the side when she started to show, instead of straight out in front of her.

Another great session I went to was called What it Means to be a Teen on Wheels. I know, it sounds really cheesy, but it actually had a lot of great information. It was led by a 32 year old woman with SMA who is also a fourth-grade teacher. The main thing she urged was to be social and not afraid to ask for help. I totally agree with this. For a person with a visible disability, there already is one obstacle set up for you that you have to learn to take down yourself, because it's less common for other people to do it for you. Parents of young children with SMA or young children with disabilities - let your child be a "normal" child! It is so crucial to their life.

The grandma that I talked about earlier also has recently published her memoir, I Can Dance. I bought it from her at the conference and have since finished it. I would definitely recommend it. It's very personal and I think shares a lot of information that is nice to know. She has a website to go along with the book, called Laurie's Legacy. I'm not going to go into all the interesting things she covers, but I think it is a very valuable read, especially for young adults with a physical disability or parents.

I hope to be able to go to conference next year in California! It really is such a good thing for all people who have SMA or are affected with it in someway.

The Wheelchair Girl: my videos

I'm so sorry it has been so long - I'm afraid to report that I was taken hostage by a group of angry woodland gnomes. Luckily, I was able to pacify them by allowing them to nibble on my ears. (No worries, their teeth had all fallen out due to their extreme intake of sugary candy).

Anyway, I have a lot to catch up on. First off, I wanted to make sure that all my blog readers are aware of my youtube videos that go by the name of "The Wheelchair Girl." I guess you could call them a v-log (video blog). Please watch them, I think they're quite funny. I hope to make another one soon.


The Wheelchair Girl - Staring

The Wheelchair Girl - Parking

The Wheelchair Girl - Elevators

The Wheelchair Girl Goes Skating

My Impression of Butts

Well, it's been three months! Three big 'uns! Bleep school! But, I thought it was time for another post, and since it has indeed been three months of being in school, I thought I'd enlighten my small audience on one of the things I see a lot of at school - butts.
The thing is, I just happen to be at butt level. It's just the way it is. It's not something I particularly love, but it's not like I have nightmares about it either. I've made lots of observations about butts, mainly the fact that they often can look like faces. Observe:
You see, with a little imagination, it's easy to see that some people do indeed have their heads where there butts should be.

Of course, things are quite different from the front. However, I think I'll let you figure that one out for yourself. Sometimes, faces are still evident, but their proportions differ greatly. I invite you to enter the world at butt level sometime. It's highly fascinating.

Digital Art!

Hi everyone! I realize it has been a deathly long time since I last posted - and the culprit is school. However, I did want to share with you something I have been working on for awhile - digital art. There are many free websites that you can use to create masterpieces, but one of my favorites is HarmonySketch. This is basically just a blank page that you can create different images on by dragging your mouse and selecting different colors and styles of "pencil."

Here are some of my favorites that I've created:
Experiment!

Snippets of Summer

Ahem. Excuse me, ladies and gentlemen, may I please have your attention. Today is my official last day of summer, and in honor of such a momentous occasion, I'd like to take a moment to reflect. I'd like to thank you all who have made these past three months possible, and congratulate those who were too wrapped up in their own life to bother replying to my messages/phone calls/texts. I love you all, as I love the summer.

Mostly.

Song(s) of Summer
This award goes out to that old-school (not really) classic, "Teach Me How to Dougie":

Jammed to this song at camp in June, requested it at my cousin's wedding in July, and taught my mom how to perfect the dance ... many times.

And because hip-hop can never take the cake all by itself, we are also issuing an award to Matt Nathanson's "Faster":

Fell in love with this song at the concert in July where I saw him LIVE and found myself singing "you taste like sunlight and strawberry bubblegum" on a daily basis throughout the rest of the summer.

Book of Summer
Janet Evanovitch's Stephanie Plum novels are just all too addicting!
Gobbled up two of them (working on the other 16) and have spent many hours debating with my friends whether Joe or Ranger are better characters. Can't wait until the first movie comes out in January, although I still wish they had cast Johnny Depp as Vinnie.




Movie of Summer
She's the Man, starring Channing Tatum and Amanda Bynes. After being badgered by my younger cousin to watch this, I finally checked it out from the library and devoured it with my friends from camp. Thoroughly recommended, especially if you're in the mood for a laugh.Drink of Summer
Who doesn't love a great smoothie? I honestly think I could live on these, especially Friedrichs' Toucan Tango, a yummy blend of peaches and other delicious fruit. Freddies has many other great smoothies as well - I suggest that you check them out!

Ahhh summer.... I'm going to miss you

Family Reunions and How to Survive Them

The fact of all family reunions is this: you are traveling an x number of miles to see people that you don't know. This is, at least, the fact of all of my family reunions. For example, yesterday my mom, my dad, and I got in the car and drove an hour and a half to a visitors center at a park we used to go camping at, and I swear to God (sure wish we could leave God out of this), 75% of the people there I had no clue who they were. Of course, this may be because my dad comes from a family of ten, and his mom and dad each come from a family of 12 (or 13 - something like that). Really, I shouldn't have been surprised, and I wasn't, I just kept thinking "so we came all the way here to awkwardly maneuver around people I at least haven't seen before?" The other 25% I could have seen in a 10 minute drive, considering they all lived near by. BUT. Oh well. Which, really, is what you have to say to yourself, because you're there, and you won't be leaving anytime soon. In the meantime, you can at least enjoy the food. And make a list of awkward situations a teenage girl in a chair is bound to come across, and simple ways to survive them.

1. Your great uncle (who you've never met before) telling you how beautiful he thinks you are ("even prettier than your mom").
Thank the old man! Considering that you have just gotten back from the bathroom mirror, and are thinking that today maybe wasn't the day to wear your hair down, this is a grand compliment, and indeed, a grand self-esteem booster, even if you already have enough self-esteem for 1000 other teenage girls. However, this is not a topic you want to linger on, especially with your great uncle you just met. So, smile a dazzling smile, say thanks, and quickly change the subject.

2. Your great aunt's second cousin once removed has just asked you your plans for after high school.
You have two choices. You can tell the truth. "I want to go to New York University to study play writing." No fun. And more importantly, this will lead to more discussions of what you like to write about (controversial matters), if you've written plays before (yes), and what they're about (a teacher falling in love with his student, a girl killed by her parents, and a lesbian who is happier than her straight friend, who attempts suicide 1/2 way through the second act). Or, you can lie so outrageously that they'll be left there to blink and wonder what went wrong with your upbringing. "I'd really like to work as an over-the-phone adult entertainer in New York City, and go to school to become a sting agent." (Ok, so not entirely a lie, BUT, this answer is bound to leave them speechless).

3. The entire clan has just stood up to pray a Catholic prayer that you don't know because you're not Catholic.
Look down at the floor, and mouth "cantaloupe" over and over. No one will know the difference. When it comes time to make the sign of the cross, don't worry, because your arms aren't strong enough anyway.

4. General Boredom
First and foremost, go and explore the building the family reunion is being held in. Look at the pictures on the wall, stare through the windows of locked rooms, and smell any object that looks exciting. Next, go outside. Walk around the entire building, twice. Contemplate the wildlife. Gaze adoringly at the sky. When you get too hot, go inside for a glass of cold water. When inside, group people into categories based on anything and everything. What they're wearing, what Star Wars character they look most like, how many apples it would take to fill your shirt to make your boobs as big as theirs. Be creative. Then, if you still haven't satisfied your lethargy, think about how 1 out of every 5 people have herpes, and pick out which of your relatives have the hurps.