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