Using Words to Change Attitudes

A Picture of ME!
Robert P. Bennett
Jericho, NY 11753
516-433-9476
Fax: 501-635-1004
rbennett@enablingwords.com




Disability in Literature: Heroes, Villains and Just Plain Folk

Hello. Thank you for inviting me to speak here today. My name is Robert Bennett. Iíve been a freelance writer for the past 15 years. I write about issues of disability. Iíve been an avid reader all my life. I read all sorts of things, from non-fiction to fiction. And, most recently Iíve become a writer of fiction myself. I started writing in 1988, shortly after the car accident that put me into this wheelchair. I started writing about what it was like to suddenly be a person with a disability in a non-disabled world. I started to read what other people with disabilities thought and felt. It was at that point that reality, as I had perceived it for 28 years, changed.

Can anyone here give me a definition of reality? In my mind, reality has always been a matter of perception. People see and think what they want their world to be. That being said, in both the ďrealĒ world and in literature people tend to create their own characters. Whatís really interesting, and I donít know if youíve noticed this, is that many writers tend to perceive the world as not having a lot of people with disabilities in it. You can tell this because there are so few people with disabilities written about. In essence everyone creates the character of every person they meet. They create the heroes, the villains and the ordinary folk. So, when an author writes about a person with a disability, they have their own perception of what a person with a disability is. The question Iím going to be discussing today is; if you have a disability must you be a hero or a villain? This is a question that has followed people with disabilities through the centuries. Disability has often been used as a metaphor for wickedness. If you have a scar you look evil. If you have vision troubles and canít look someone in the eye people may not trust you. If you have a problem with your balance they wonder if you are sober. On the other hand, if you overcome your disability you are seen as brave, a role model and a hero. In the world of literature, as in real life, disabilities can signify that the character is a hero, a villain, or common man. It depends on the authorís view of disability. Approximately one out of five people in the world have a disability. That means that, in all likelihood, most people know someone with a disability. Today Iím going to be talking about real life experiences of disability, as they are discussed in poetry and memoirs. Iíll also be talking about disability portrayals in fiction. I may even throw in my own personal experiences. I invite you to ask any questions you may have.

Let me talk a little about the real world, and the people with disabilities who live in it. For Mattie Stepanek, a 16 year old poet and a person with Muscular Dystrophy, writing was an outlet. His poetry was a way to express his feelings, thoughts and dreams for the future. He used a wheelchair and breathed with the help of a respirator. He was a strong and insightful young man, and he added to the world through his poetry. He wasnít a hero, except to those who knew him. He wanted to be a peacemaker when he grew up. He never got the chance. However, his book of poetry, Journey Through Heartsongs, continues to pave the way to a world where peace and love will dominate over prejudice, fear and hatred. What we learn from someone like Mattie is that everyone has something to contribute to the world to make it better. It doesnít matter whether you have a disability or not. If people get to know you they lose sight of the disability and just see the person. At least thatís the way itís supposed to work in the real world. Most of the time it does, given time.

Images in literature are a different matter entirely. You read a book relatively quickly. You only get to know the people in the book over a few hundred pages. You donít live with them. You donít interact in their lives. You donít often get the time to get past the disability images. Sometimes thatís a good thing, often not. Do any of you recognize the name John Hockenberry? For many years Hockenberry has been an Emmy award winning news correspondent. Heís also a harpsichord player and a wheelchair user. The latter is due to an automobile accident when he was nineteen years old. To most Hockenberry is a hero on wheels. He affects how people with disabilities are perceived, both in the media and in the literary world. People like him because he tells it like it is, without pulling his punches. In his autobiographical book, Moving Violations, he explores how differences are frightening. What do I mean? In the book, Hockenberry pulls back the veil to show his readers the basis for bias and stereotyping. Itís a scary place to be. But, he also shows us that through shared experiences we can begin to question individual and society perceptions of what mainstream really is.

What does it mean to be in the mainstream, and do your perceptions differ from societyís? In his autobiography, The Diving Bell and the Butterfly, author Jean-Dominique Bauby describes his life after suffering a massive stroke in his brainstem which caused a rare disability called Locked-In Syndrome. For the rest of his post-stroke life he was only able to move his left eye. To write the book he needed to choose letters as an assistant recited the alphabet. When he blinked twice the letter would be written down. Bauby is a good person. He is a person who is highly intelligent, strong willed, and competent. Before the stroke he took care of his father, who lived in a walk-up apartment. After the stroke he was the one who needed taking care of round the clock. The entire book is about the role reversal he experienced and how he felt about it. Let me ask another question ... what experiences can you identify with regarding the balance between independence and independence? A Sense of the World, by Jason Roberts, is the real-life story of James Holman. In the late 18th and early 19th centuries Holman was an officer in the British navy. Early in his career he became ill, which resulted in both a condition that resembled rheumatoid arthritis and blindness. He spent years trying to find cures for both conditions, without success. He even attended medical school, not a small feat for a blind man especially back then, in an attempt to learn about the possible causes for his blindness. Blindness did not dissuade him from having a full life and ďseeingĒ as much of the world as he could. From boyhood his goal was to circumnavigate the world, and he succeeded. In the process he earned a world-wide reputation as Ďthe blind travelerí and accumulated more miles traveled than any other explorer had up until the mid 20th century. This is a man who had towns and rivers named after him. A man who discovered new lands and civilizations. A man who, through his identification of several unknown species of animals, inspired the likes of Charles Darwin. But, by the end of his life, he was also a man who was dismissed by the general population as a liar and charlatan. They said, as a blind man, he could not possibly have experienced or done all the things he claimed to do. Was Holman a hero or just an ordinary man? Iíll leave that to your judgment.

Can a man find beauty in his disability? Can he express that beauty to the world? In his memoir, Under the Eye of the Clock, Christopher Nolan does those things. Nolan has Cerebral Palsy. In an attempt to examine and discuss objectively how the condition affects his life he writes in the third person, through the eyes of a fictionalized character, Joseph Meehan. By doing this he is able to pull himself away from his own disability, away from a body that can neither verbally communicate nor move through conscious effort. And yet his words, his descriptions, are musical. His prose is nothing short of poetic. Through Meehan we see how Nolan meets the world, and how he tries to engage it. He talks about how he is able, through his gaze alone, to direct his motherís actions and responses. We watch as he matures and struggles with his own sense of self and his need to be independent. He loves his family, and acknowledges that they have been of immeasurable help to him, but by the end of the book we see that he has to break away from them as much as he can in order to become his own person. Nolan is an everyman, with an everymanís hopes, desires and dreams. Though some might see his efforts as astounding for someone with a severe disability, Nolan just wants to be a complete individual. Arenít these the same things we all struggle with?

Ok, so now weíve looked at how people with disabilities see and express themselves, and how they can contribute to societyís image of disability through their writing. Now letís talk about how authors create images of disability in their fiction. How is disability usually illustrated in fiction literature? From many different sources we see many different views of disability. The question I put to you is thisÖ are any of them realistic? Letís first go back to early childhood and look at a favorite tale. Snow White and the Seven Dwarfs tells the story of a woman helped by seven men of short stature. While it does not portray the difficulties someone with dwarfism might experience in their life, the story does demonstrate that even though someone is of diminutive size they can still be loyal, helpful, and industrious. Then thereís Mary Shellyís Frankenstein. Here was a creature made up of parts from many dead people. Those parts, sewn together, created a scared and ugly creature. Throughout the story the creature was portrayed as a monster despite the fact that he showed kindness to a little girl and only did harm when he was attacked. He was a sorrowful creature who only sought to be left alone. Shelley could have just as easily given Frankenstein prosthetic limbs. They existed at the time she wrote the story. Looking at literary characters with prosthetics one might get the impression that just because someone is missing an arm or a leg it makes them a bad person. Take Peter Panís Captain Hook and Moby Dickís Captain Ahab as examples. The pirate James Hook brandishes his curved, metal hook as a weapon. Captain Ahab uses his wooden leg as an excuse to hunt down and slaughter the great white whale. In John Steinbeckís novel Of Mice and Men we are introduced to the character of Lenny, a man with diminished mental capacity. Steinbeck describes Lenny as a hulking individual who is unaware of his own strength, someone who kills animals and harms people without intending to do so. The character is drawn from a prevalent fear of the period in which it was written, that people with cognitive disabilities were a threat to society.

More modern examples of disability linked to villainy can be found in Dan Brownís The DaVinci Code. In the story the two main villains, Teabing and Silas, are both people with disabilities. Silas suffers from albinism. Teabing has a severe mobility impairment caused by polio. In Kelsey Georgeís mystery novel, Blind Justice, Norrie Benedict is a blind woman with greatly heightened senses and a psychic gift. When she walks into a crime scene or touches an object she can Ďreadí it, telling the police how a murder went down and giving descriptions of both perpetrator and victim. When a conversation takes place, even in a whisper, she can hear it. My question is, does a blind character need these kinds of compensations? Can a blind person just be a blind person? Here we have a good woman, on the side of justice, who just happens to have a disability. Thereís nothing wrong with that. Is there any reason to make her into some kind of Superwoman with heightened senses and psychic abilities? In my own novel, Blind Traveler Down a Dark River, Douglas Abledan is an everyman who becomes a hero. He is a blind man who is trying to have a normal life after losing his sight to a drive-by shooterís bullet. He works as a computer hardware specialist. He socializes. He enjoys the occasional night on the town. But, when he witnesses a murder, by way of the GPS navigation device that helps him get around his world, he is confronted by the prejudices and dismissive attitudes of those he meets. Though he does not wish to be so, he becomes a hero by solving a crime that no one else wants to deal with.

Hero, Villain, Everyman. We are each all three and we are each none of those. Literature tends to mimic real life. I read a lot of comic books. The writers of those tend to create characters that are larger than life. They exaggerate certain features and diminish others. The goal is to glorify or vilify with no grey in between. Other forms of literature tend to do the same thing. What we end up with in the body of literature is the same thing that we have in the real world, a balanced society. When youíre reading a book that has a character with a disability itís best not to judge the author. Just observe from an outsiderís point of view. Youíll learn a lot about the world by how authors depict their characters. Youíll get an insight into his thinking and his worldview, or just a bit of his perception. Iíll leave you with two final questions. What are human perceptions shaped by? Do they come from with in us or from without? I put it to you, and literature tends to back me up on this, that perceptions come from both.



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