Fighting Monsters Without Becoming One Part 1

Fighting Monsters Without Becoming One Part 1:

     Last week, I discussed aesthetics as a reference point for disability culture. But, what is meant by “disability culture”? A group of people united by limitations? Certainly not! In the words of the young Nietzsche to Wagner: “Let such “serious” readers learn something from the fact that I am convinced that art represents the highest and the truly metaphysical task of this life, in the sense of that man to whom, as my sublime predecessor on this path, I wish to dedicate this essay.”² (Nietzsche 1872/1888/ Kaufmann 1967 p.32) Hence, as my predecessor Nietzsche has taught me, my work is not to judge the pros and cons of disability culture. I am not that “serious”. Viewed from pros and cons, disability culture becomes a hindrance and resignation to one’s limits; an enfeebling philosophy shy of life’s rich potential. I view life as an artist does: rich in both comedy and tragedy.

Rather than as a pro or con, a culture of disability is based on everything a person is capable of becoming both in spite of disabilities and because of them. To this end, it is a multivoiced body. It is a clamoring of noble voices and individual experiences with disabilities all vying for dominion over the position of limited bodies. The body can be can be absent (The Absent Body by Drew Leder: 1990), it can even make a difference (The Difference That Disability Makes by Rod Michalko 2002), expressed as a biomedical condition, or even stay silent. (The Body Silent: The Different World of the Disabled by Robert F. Murphy: 1987), As I will demonstrate, Nietzsche’s twin abysses continually gaze into the multivoiced body of disability culture. All these voices answer, question, and stare back at disability; the question is how to bring them together for the positive notion of disability culture I have just described. I answer with help from Nietzsche and the multivoiced body.

It is Nietzsche that Fred Evans characterizes as valorizing the creative and destructive forces of nature, and hence the multivoiced body: “Nietzsche says that events in the world of contesting value-creating powers do not have essences and that “purposes and utilities are only signs that a will to power has become master of something less powerful and imposed upon it the character of a function.”³ (Evans 2009 p.26) It is exactly this character of function that disability culture seeks to redefine. Hence, following Evans, I will use Nietzsche’s idea of will to power to define three “voices” of disability culture, and how they interact with each other and those outside it; chiefly the medical perception of disability as a limitation or defect. In so doing however, I am not claiming that one is better than the other. My goal is to show how disability culture can accept the benefits of able-bodied society and the medical community while still asserting its own different voices. In exploring each “voice” of disability culture, one must Evan’s words, “exclude the excluders.”

The first “voice of disability culture” is the phenomenological view, best articulated, I feel by Drew Leder’s notion of dys-appearance in The Absent Body: “These problematic situations initiate dys-appearance through a variety of mechanisms. Sensations of pain and discomfort exert an immediate call.”⁴ (Leder 1990 p. 86) According to Leder, thematizations of the body and error only come up when physical mastery is questioned, and sensorimotor error is remembered in dys-appearance. The task of disability culture viewed from phenomenology is the representation of dys-appearance as part of an everyday experience in the absent body. The resulting “community” might be able to characterize disability as such an everyday part of life.

The focus of Drew Leder is the lived person, who can exist seemingly without body awareness. The body problematic is secondary, and dependent on performance. The aim of the voice is the simple correction of Missbefinden, or sensorimotor error. It points the way other voices within the body, but does not address these voices beyond individually perceived stigma. Its voice is the awareness of the stigma itself viewed “outside” the body, as if it were absent.

Drew Leder’s conception of disability is accurate in that one always feels the voice of stigma and dys-appearance. But, so far there is no description of a sense of disability culture beyond a group of people faced with common limits, and no powers are introduced to make disability a positive cultural force. In the words of Nietzsche, quoted by Evans in his book: “Life itself is will to power; self-preservation is only one of the indirect and most frequent results.” (Evans 2009 p. 114)

In my view, if disability culture is to overcome the entropic effects of limitation and weakness, it must focus on the strength of disability. I refer to this as the superhuman (übermensch) element in disability, borrowing a term from Nietzsche’s Zarathustra: “Man is something that shall be overcome. What have you done to overcome him?”⁵ (Nietzsche 1885/Kaufmann 1974 p. 124) Overcoming means to me that disability should be a positive force other than the desire to be normalized. Its voice both limits and extends one’s determination and human experience into the superhuman.

Updates

While not a particularly busy day, I've had a lot of thoughts I'd like to share about some things I've been reading, watching, looking at. Firstly, I finally watched 2001: A Space Odyssey. It was pretty good. I don't know while people say it's boring. Certainly had a lot of drama and lots to say about the man/machine relationship. Which is my favorite. I liked HAL as much as I did the human characters, (He was only trying to be a good computer.)

Secondly, I went to the library and got out about 20 graphic novels, including the entire Marvel Civil War and a  load of X-men...plus others. The librarian who helped me was a nice woman, obviously a comic fan. She knew what was new and good and helped me find stuff based on which heroes I liked. (No luck with Spider-Man though...a lot was checked out, or I had read.) I'm really enjoying The Fantastic Four right now, which is weird because I didn't enjoy them as a kid. And they had bad movies. I really like the family dynamic though. And the narration is good.

Thirdly, I think next time I'll post some movie reviews or maybe something more culture or sci-fi related: Man vs. Machine. I've had a lot to think about on that. So, it's not often I do casual updates, but expect more; until then I'll keep looking for art in the disability community....if it can be said there is one. Another favorite theme of mine. I found a lot in Berkley, and one conference on disability & poetry in Columbus.

Signing off,
CB

VSA Day of Arts for All etc.

Well, today was a very busy day! I was able to get an inside look at some of the pieces that will be on display for VSA's "Day of Arts for All" which I'll be attending in conjunction with VSA on March 3. The Day of Arts for all is an art show going on at the Westerville Community Center. They feature disabled artists and all kinds of awe-inspiring works. I am very excited to be going; I was practically jumping out of my chair to look at these works and now to interview the artist themselves 1 on 1.

For starters, here's some of the artists/artworks I was excited to see:

• Kamachatka – Fred Kabler. Inspired by: Magazines. Medium: Acrylic.
• Sing Sweetly – Brandon Boggs Inspired by: “Pushing the envelope” of his limits, views art as an “emotional outlet”. Medium: Watercolor.
• Energy – Jarrod Arencibia Inspired by: Reflections and Telephone Poles Medium: Graphite

Additionally, I went to the bookstore...to feed my creative side, again! 

Everyone should go to this event if possible!

CB

Pop Art and Disability: The Return of the Literati

Pop Art and Disability: The Return of The Literati

Last time, I discussed how my love for art and imagination transformed into a love of culture and language. I will now show how my own views have emerged to fit together both art and culture while living amongst my able-bodied and colleagues; in literature and a Pop Art aesthetic. Pop Art is inherent in easily accessible and recognizable media, (Like Star Wars.) resulting in patterns of emotions and actions revealed themselves in the ability-extending (hereafter, superhuman) language during the course of the embodying. (ex: Jedi Luke.) Particularly, the themes that arouse fear of dys-appearance (the appearance of malfunction.) I have called the able-bodied aesthetic. I called it the able-bodied aesthetic in that there are perspectives shared and differing on what the "norms" of the body are, and those perspectives result in actions and the assumption of roles by both the strong disabled and the able-bodied aesthetic. Because the body can be viewed as pleasing from different perspectives, as Lyotard explains to Jean-Luc Thebaud in Just Gaming, to speak of what is pleasing is to pressuppose universals of a particular audience: "It means that there are judgments of taste, and that these judgments are universal. In other words, things are there; they are in place" (Lyotard and Thebaud 1985 p. 11). These differences in "universals" of a particular audience are the basis for what I call the strong disability culture. The strong disability culture is necessarily an interdependent one, with the independent living agency acting as a supplier of resources. A culture develops in the use of signs between disabled and able-bodied as both negotiate their shared aesthetics and narratives. To quote Theodore Schwartz: “Culture consists of the derivatives of experience, more or less organized, learned or created by the individuals of a population, including those images or encodements and their interpretations (meanings) transmitted from past generations, from contemporaries, or formed by individuals themselves” (Avruch 1998 p. 17) if we are to accept the above definition, then we must also accept disability as one aspect of culture, with its own artistic expression, and the common experiences that are accessible through Pop Art, with which both able-bodied and disabled participants can share an easily accessible intercultural “lexicon”.

Who am I Part 2: The Artist Strikes Back

Who am I Part 2: The Artist Strikes Back

Last time, I described my childhood love for drawing and art, and how it shaped my life. As I began to travel new places and meet new people, I began applying this creative principle to language. It too, helped me imagine new things, and offered me a new way to overcome my disability: by involving others in my imaginative process with wordplay and language. Others could help me become that limitless artist through words!

As for my interest in language, my first principal was Mr. Ruiz, a Mexican-American advocate of Spanish in schools. I was fascinated by Spanish; and learning a foreign language was like drawing to me in many respects. There’s an imaginative and playful aspect to being a wordsmith that I enjoy. And again, that’s something that doesn’t involve my disability; the focus becomes communication, and I love the positive feedback I’d get when speaking a foreign language correctly to a person who spoke it back. Perhaps my struggle to represent my life experience as a disabled person somehow tied into a sympathy and longing to help people overcome linguistic handicaps. And thus began a love affair with language and communication.

Even prior to my experiences taking in little Spanish lessons and storytime with Mr. Ruiz, I knew that my first babysitter was Spanish, a best friend of my mom. And that someday we would go visit her. When I was 9 in Fall 1995, the family vacationed to go see her in Madrid, Spain for 3 weeks. That changed my life forever. I didn’t even know, as a good disabled American boy, that I would ever be able to go overseas. And again, many of the things that American boys only dream about: Castles, knights, and ancient cities, ice cream shops and video arcades on every corner, were real in Madrid. And my parents helped me navigate the landscape in a stroller! So I didn’t even have to worry about my disability.

I spoke Spanish as much as I could, and used hand signals, because I thought people wouldn’t understand my American English, but some did. I drew comics in my spare time, and dreamed of the American West, which was influenced by Spain. Other things I did were: Watch the Spanish version of The Flash on TV, visited castles, watched bullfights on TV (Even though I was told not to; they were too violent.) and other tourist sites; ancient Roman ruins, cathedrals etc. I will always be grateful to my experience in Spain, for the world opened up to me; in fact, I would go so far as to say everything I’ve done is in the hopes of going overseas again, and dreaming as I did in Europe.

When I was 13, I got tired of taking Spanish, and decided to take a “break” and go take German. Like most American boys, back then my knowledge of German culture was limited to bratwurst and World War II. I didn’t know that German, NOT Spanish would become my second language. My first teacher, Mr. Dazer, was a nice guy. All my German teachers were nice. We read German stories, and it being a basic middle school course, he would translate. But, again I found myself enthralled by learning a new culture as he showed us The Brothers Grimm, Max & Moritz, and even snippets of German MTV. Although, I thought my destiny was with Spanish.

Again, at 13, I went to Disney! This time, to the Epcot Center. I went with my Grandpa to a German-styled Biergarten in the park, as part of a Millennium celebration the park had been set up according to different cultures, in the hopes that the 21^st century would be one of cultural understanding. The waiters and waitresses were all from German-speaking countries. I spoke a little German to our waiter, and soon the whole kitchen staff was gathered around my table wanting to speak to me, so I promised them I’d learn more German. Again, Disney did not emphasize my disability negatively, or discourage the fact that I wanted to talk to people. It was encouraged.

Now, my two impulses, for exploration and creative power, came together as I learned new languages... specifically German. My thoughts expanded as I learned a new language, my need to explore was unleashed as I brought Germany and it's culture into my surroundings, and in every way my confidence and power to understand in that area increased. What I couldn't get done physically I got done with language and imagination. I brought a new culture, a new country to me, instead of vice versa. And in the age of the internet, it was easy to keep up with.

I soon got into German Rock (Krautrock, sometimes called) and took German all through high school. High school was cool because I had many friends, and I mostly had freedom: I played Dungeons & Dragons. However, when the family divorced in 1997, I noticed my fascination with art dwindle a little; if not turn noticeably darker. (Not worse, just darker.)

But, I was able to keep mostly to my own imagination and share it with my friends. We’d invent games, make little movies, go exploring, and (if I was so lucky) speak a little German…if they could. Again, a lot of it was trying to make real some fantasy I had in my head, whether high-tech Utopia/dystopia or 19^thcentury German aristocrat. I even caught up on a semester of high school work I missed when I had scoliosis surgery in 2002. There, I spoke German to the doctors who could, watched Bill Murray comedies, and listened to audio CDs of Bill Cosby and J.R.R. Tolkien’s Lord of The Rings, which wasn’t yet a movie trilogy. I joked that in the hospital the 9 Tolkien Cds were “my best friends”. Wherever I’ve gone art, culture, and myth “soundtrack” my life; its always been with me!

A big thank you

A big thank you to VSA Ohio who just referred to me in their February Newsletter.   VSA is an organization that promotes creativity and art for people with disabilities. And they mentioned my blog. I'll be blogging each week. Thanks VSA!

Who Am I?: A New Hope

 
Who Am I?: A New Hope

I'm a hero. My quest has always been to figure out what makes me a unique and talented individual with a disability who grew up with an able-bodied twin. I’d say my first formative experience was learning about my disability and my mother told me not to focus on what I couldn’t do. Of course, back then I didn’t know my limits, and I remember trying to climb stairs and jump off chairs. I heard and saw great stories growing up, too. Which as you will read have led me to believe I am a hero.

Another formative experience for me was my trip to Disneyworld around 1991. Here, not only was I accepted for my disability, and moved to the front of the lines, but my favorite characters, including the Teenage Mutant Ninja Turtles, Mickey Mouse and Donald Duck were “real.” Of course, they weren’t, but the lesson I learned was that you can create something out of your imagination and make it real.

In that way, I knew that if I couldn’t do something I would just draw it, and it would make me feel better. I would draw myself into videogames, or imagine the different adventures I’d have with movie characters like Indiana Jones, or comic book characters like Professor X, who was also disabled. My philosophy was that I would overcome my disability through my creativity. I made little comics from about age 7 up to 16, many of which were based on videogames or cartoons I watched, or media in general, or silly little characters, my favorite being Duckle, a T-Rex. Because I wanted him to be a T-Rex, and Duckle was…just a funny name!

Also, in school, I taught myself how to read because I wanted to make sure people were telling me stories “the right way.” People got bored of telling me the same story, but I’d make sure they told me good stories, and eventually I read by myself. When I was young, I read my older brothers comic books and also watched the X-men cartoon on Fox Kids. As well as other comics: Superman, Avengers, Batman, Spidey, etc. lots of Stan Lee. (DC is not Stan Lee, I know.)

Comics hold a special place in my heart because they follow a very (for lack of a better word.) picturesque philosophy; ex: You show what’s going on, and you can look at it and spark the imagination immediately; where maybe in a book, you have to re-read things that don’t “spark” right away. And it also follows the Disney philosophy that “If you can dream it, you can do it.” I also had stories read to me by my mom like King Arthur and Lord of the Rings. All these added to my creativity and taught me about what’s worth fighting for, and how to use your powers for good. From about age 7 to 12 I tried to figure out my mutant power!

So later, in my quest to make these things “real” with imagery and mythology became my focus, not just my minor. I was no longer AS optimistic as a kid (or naive.) throughout college, but perhaps because of that, a little wiser. My main influences of course, were Joseph Campbell, Nietzsche, and many modern philosophers on disability.

As you can see, my main influence is mythology and the Hero’s Quest. (The drive to find a Greater Good, as described by Joseph Campbell and myself.) I want to be able to do whatever I can dream, so to speak. So, I think the Disney philosophy says it best. I want to be able to create my own movies and art, and whatever is in my head; like artists do. I want to be able to make that real. I like how stories spark imaginations and inspire people. It’s very much about discovery for me; show the image; then discover the story…and explore it. I’d like to be able to discover who I am, and at the same time, to indulge in my dreams and make them real.

“…To seek out new life and new civilizations - To boldly go where no man has gone before!”

- James T. Kirk