Table Of Content
- About the author
- About the book
- This eBook can be cited
- Table of Contents
- Chapter 1. The Personal Is the Public: My Story
- Chapter 2. Mapping Out Disability
- Chapter 3. What Do Popular Culture, Television, and Youth Have to Do with It?
- Chapter 4. Youth Is Wasted on the Young and Other Myths About Popular Culture
- Chapter 5. A Methodology to the Madness
- Chapter 6. Game of Themes
- Chapter 7. “Breaking” Down the Content
- Chapter 8. (Dis/Dys)abling the Truth: Findings and Implications for Pedagogy
- Chapter 9. Series Finale: Changing Attitudes and Perceptions Through the Media
- Series index
← viii | ix →Acknowledgments
The function of education is to teach one to think intensively and to think critically. Intelligence plus character—that is the goal of true education.
— Martin Luther King, Jr. —
This book would not have been possible without the love, support, and encouragement I received from my husband Sam, my children Liam and Ella, my parents Jack and Randi, my second parents Marcel and Soly, my brothers Jeremy and Cory, Julie, Shane David, Nancy, Kayla, Dylan, and friends (you know who you are). It also is crucial for me to recognize my late grandparents Leon, Eva, Ike, and Mollie; they were instrumental in my development and have inspired me in more ways than I thought possible. My grandmother Eva will never know how much she turned my life around as I watched her face challenges and push through adversity (surviving the Holocaust and living through an amputation) to prove to herself and her family that she would not be beaten down but lifted up. My grandfather Leon, a Holocaust survivor as well, always expressed his wish for his grandchildren to pursue education and take it as far as it could possibly go. As a man who never ← ix | x →had that opportunity because of his circumstances, it was his biggest dream, and I hope that I have fulfilled his wish and have made him proud. My grandparents Ike and Mollie always only saw the best in their grandchildren and fed us with kindness and unconditional love that transformed into our realization of what it means to treat people with kindness, respect, and the purest form of love. Only now am I beginning to realize how much my family has sacrificed so that I could reach for the stars and push through what has been a challenging, yet incredibly rewarding time in my academic/personal life. I do not have words to adequately describe my deep gratitude for all they have provided me, although I hope to show them in the years to come. I have benefited greatly from the mentoring of Dr. Shirley Steinberg, Dr. Steve Jordan, and Dr. Karen Gazieth—their comments and exceptional efforts to make my work the best it can be will always be treasured and appreciated. Dr. Steinberg was instrumental in helping me to carry out a study relating to critical disability and pedagogy as I reflected on my past experiences and interests in both media studies and disability studies. I developed a tremendous desire to learn and understand this multifaceted topic of study. I am truly indebted to her for fostering the same pursuit and fascination in me and, of course, for her assistance and advice during my years as her student. Dr. Jordan has been a patient, helpful guide who never gave up on my efforts. It has taken many years and a lot of patience and persistence to bring this research to fruition. In essence, I hope that this book will make an impact in the field of critical disability and media studies. I hope that it will open the door for further exploration and understanding of a topic that has been marginalized for so long. I am hopeful that we are living in a time where diversity and acceptance is the norm and people are seen as people not objects, with varying strengths and abilities.
← x | 1 →Chapter One
Stereotype assumptions about people with impairments are based on superstition, myths and beliefs from earlier less enlightened times. They are inherent to our culture and persist partly because they are constantly reproduced through the communications media; books, films, television, newspapers and advertising. (Barnes, 1991, p. 45)
Who am I? How do I situate myself in my writing and what life experiences have brought me to this point in life? What effect do I want my work to have in my field and beyond? In Qualitative Inquiry, Butler-Kisber (2010) asks, “Who we are as researchers, our research identities, changes with time and experience, just as our everyday identities do” (p. 19). I believe that our experiences, especially early in life, mold us into the individuals we will become and give us a strong foundation for what will turn our passion into substance. Who I am affects my research, and I consider my positionality as I introduce this work.
Delving deeper into the reasons I have devoted so much time and energy to this field will become apparent as I weave together my past to make sense of my present. As a point of entry, I use the opening quote about stereotypes and myths about disability from Barnes (1991). ← 1 | 2 →I believe that this quote represents my burning desire to research a topic that falls under the radar so frequently, yet is fundamental to understand because of the impact it has on those who often are denied a voice in which to express their truth.
In developing the research question for this topic, I had to observe, reflect, and ask questions of the questions already posed and stay true to myself in the process. The overarching question that evolved from this process is the following: How can my research on popular culture be contextualized within the theoretical literature on critical disability studies in education? Critical disability studies in education can be defined as a critical investigation of disability through a sociopolitical lens that applies humanities, social sciences, and art-based methodologies to ongoing matters related to education and pedagogy (Gabel, 2005/2009).
As Kincheloe (2005a) states, “all observations of the world are shaped either consciously or unconsciously by social theory” (p. 324). Using a theoretical framework in research helps explain the relationship between our observations of the world and their effect on our daily lives. An approach grounded in cultural studies supports an exploration of the various concepts and methodologies responsible for constructing our views regarding the politics of media and representation.
Media culture is the dominant form of culture that socializes us in terms of our identity, social reproduction, and change. Cultural studies is especially useful for this type of research because it provides a specialized understanding of marginalized groups with respect to race, class, gender, and ability. It is my intention to link theories from media, education, and cultural studies because these three disciplines seek to understand the production of all things related to culture. While looking at the different aspects of culture and media, my personal narrative emerged, and parts of my past began to unravel and created a need to understand how I got to where I am and why I chose to use particular concepts and theories for this study. I have outlined the steps I took to identify my position as a researcher and express my passion for both disability and media studies in popular culture in a manner that reflects my process (Hall, 1992; Kellner, 1995).
I will begin with a discussion about my unexpected encounter with disability and how this inspired me to question who I am, and in turn ← 2 | 3 →how it introduced me to a new world with which I had yet to become familiar. Then I move on to my early experiences with television, influenced to a great extent by my grandparents and the family dynamic created around this powerful technology. I tell the story of my grandparents, who survived the Holocaust, and their persistence to maintain normalcy through the atrocities they suffered. I briefly talk about my experience working in the media field in New York City and how an anecdote from my father—about a teacher and his connection with a marginalized, powerless student—caused me to shift careers and interests. I discuss my experience working in a special needs classroom with students who had severe learning differences. Finally, I introduce some of the theories that have informed my work in the areas of disability and media studies, which I expand on in later chapters that discuss methodology.
Poignancy: My Encounter with Disability
The shedding of the illusion of identity allows for our “lived experience” to come to the forefront. Thus our “lived experience” would be an integral part of the atmosphere and tone for any change within our lives and our interaction with others, whether they be disabled or non-disabled. (Overboe, 1999)
My relationship with disability differs from those individuals who actually live daily with a physical or mental disability. As an able-bodied person, I am using a unique lens to look at the disabled population. As I became interested in this particular area of research, I delved into my childhood to connect the personal with the academic.
When I decided to pursue a study involving disability, I thought it would be important to include my early memories of disability and how I interpreted differences at a young age. I recall with great trepidation being in a public space (e.g., mall, movie theater, department store) and my initial reactions to an individual missing an arm, a leg, part of his or her face, or those individuals walking with a large group and needing an aide because of what I later learned from my mother was a mental deficiency called Down syndrome. I remember being extremely ← 3 | 4 →uncomfortable when I came into contact with disability. I suppose the awkwardness I felt had more to do with an infantile ignorance and the social division between those who are able-bodied and those who are not, as well as a child’s discomfort with someone who looked different. As I grappled with my past experiences with disability, one of the first theorists to inform my work on the body was Leder (1990), who characterized the body as having two dimensions—lieb (lived experience) and korper (categorization). In an attempt to understand one’s everyday perception of the living body, it is critical to look at what characteristics he or she picks up on when face to face with another human being. The ability or inability to sift out the characteristics that stand out in an individual, in large part, plays a role in how a person living with disability forms his or her identity. Merleau-Ponty (1962/2005), another theorist who discusses the body and consciousness, ties these phenomena together by arguing that the “lived body” does not differ from consciousness. He states, “We make perception out of things perceived. And since perceived things themselves are obviously accessible only through perception, we end by understanding neither” (p. 4). Merleau-Ponty’s theory of embodied perception is examined by Abram (1996) in The Spell of the Sensuous: Perception and Language in a More-Than-Human World. Abram points out that perception is reciprocal—the body perceives the world and the world perceives it. The body perceives the world through the senses and grows out of and remains continuous with the environment, experiencing and perceiving meaning by other ways of knowing (especially through the senses, which Abram argues are the doorway to our imagination) that go beyond simply our thoughts about the world.
Both Merleau-Ponty (1962/2005) and Leder (1990) argued that knowing ourselves through the mind and the body assists in identity formation and creates a way of life that allows for a more grounded place in the world. This identity formation also occurs as we make social connections, and similarities and differences both physical and emotional begin to emerge. As I look more closely at identity, I discuss my grandmother and her experiences as a Holocaust survivor and a woman who would later have her leg amputated due to complications with diabetes. These experiences have worked to influence my ← 4 | 5 →own ideologies and have caused me to reevaluate notions of the “lived body.” Discussing the “lived body” within this particular research relates to the relationship between the physical body of youth living with disability and how this is interpreted by society.
My grandmother, Eva, identified herself as an Eastern European Jew who survived the Holocaust. Her intense experience began when she was 12 while waiting in a line at a concentration camp in Poland with her entire family of seven. Suddenly, she was yanked out of the line by a Polish police officer who asked why she was in line with the Jews “when she looked so much like a Polack” (luckily for my grandmother, she was blonde-haired and blue-eyed, the quintessential Aryan child). My grandmother’s mother heard this and told her to get out of the line and to take her nine-year-old brother Stanley with her. My grandmother immediately ran away as fast as her thin legs could carry her, and her little brother did his best to keep up with her. For the next five years, the two of them went into hiding, begging for jobs and a place to sleep. The intensity of my grandmother’s “lived experience” during her teenage years on the run with her brother in survival mode speaks volumes about her strength and resourcefulness at such a young age. She used her two legs to run through the streets of Poland, to do what was necessary to take care of herself and her baby brother. The irony of what was to come later in her life has played a considerable part in why I have become interested in the field of disability.
When my grandmother was 16, the Jewish people were liberated, and she was free to live her life as a Jew with her brother. My grandmother met my grandfather, Leon, also a concentration camp survivor, almost immediately after the war, and they had one of the first religious weddings in 1945.
When my grandmother was in her late 40s, she was diagnosed with type 2 diabetes. She never found the appropriate way to care for herself or to live cautiously with her disease: she saw it as more of an unnecessary burden than as a serious condition that necessitated that she take better care of herself to manage it properly. It was difficult for her to accept what she had, and it overwhelmed her sensibility. In essence, my grandmother was held captive by this disease, and in an ironic turn of events, her will to survive turned to capitulation. It was as if she had ← 5 | 6 →surrendered all of the strength and determination that had served her well in all her days in hiding, and she had no more willpower to go on with diabetes. The depth of her surrender became clearer to me five years later when she developed gangrene, a life-threatening condition that arises when a body part loses blood supply. Her condition became so unmanageable that the doctors had to amputate part of her right leg, which put her and our family in a position we could never have imagined. Questions about how we would go on with her as a disabled woman began to surface, and we realized how much we needed to learn and accept about her new “identity.” The concept of the disabled body “dys-appearing” because of a dysfunction (Leder, 1990) can cause individuals to focus on the part(s) of the body that are missing and make all other characteristics disappear, thus focusing mainly on the impairment (i.e., loss of leg). I begin with this recollection because I believe it is more powerful to start with the impact that disability can have on a lived life and then juxtapose this against the impact of representations of disability on TV.
Barnes and Mercer (2003) discuss Young’s (1990) concept of cultural imperialism as a devaluation or undermining of a particular group by dominant and negative social stereotypes, which magnify the notion of that group as the “Other.” In some sense, this concept helps to explain why my mother, especially, internalized the pain and suffering that my grandmother was going through and felt this amputation had marked the end of my grandmother’s life as my grandmother knew it. The thought of my grandmother being categorized as the “Other” and marginalized by society was difficult for both my mother and my grandmother to grasp. However, that all changed when my grandmother entered a rehabilitation center in upstate New York and was surrounded by other individuals in similar circumstances, who carried a more positive, optimistic view about what had happened to them and had realized, as a group, that they were not necessarily the “Other”—rather, they were the other minded. The experiences of the people my grandmother met at the rehab center opened her eyes to a greater awareness of differences and demonstrated a deep desire, at physical and psychological levels, to gain back mobility and strength.
← 6 | 7 →In the haze of my mother’s grief and pain of dealing with her mother’s loss, it was difficult for me to express my feelings about what was going on in my own head, especially when I first saw my grandmother after her amputation. As I mentioned earlier, I always have been uncomfortable with the notion of “disability.” Whereas before I could be in a public space and turn away from a man missing his arm, now I had to face my grandmother on a day-to-day basis, a woman whom I admired and looked up to who now was the embodiment of the thing I feared. My initial interactions with my grandmother were guarded at best, and I was not sure how or if my close relationship with her would change because of my ability or inability to cope with what was going on. As a sheltered 12-year-old girl, I now had to adapt to a new framework and pedagogy (I didn’t quite think of it in those terms then, but on reflection, that was what was happening).
Carrying a great deal of built-up anxiety, I went to visit my grandmother in rehab. The concept of rehabilitation and what this implies for a person who has just lost part of a limb is explained by Barnes and Mercer (2003) in their discussions about Morris (1989) regarding rehabilitation: “It is very apparent that rehabilitation discourse is invested with a moral notion of what bodies should be like” (p. 83). Society has created a prototype for what “normal” looks like, putting emphasis on the body and physical appearance as defining an individual’s ability or (dis)ability. This concept of body perception relates to Leder (1990) and Merleau-Ponty’s (1962/2005) theory of the body and self. As I neared the rehab, I continued to naively put emphasis on body image and my perception of what a typical body should look like. I was petrified at what I would see and how I would react. Upon entering the facility, I saw the light in everyone’s face and the “normalcy” in which they were living their lives.
One evening at the rehab center, a game night was held in a recreational room. My mother and I took my grandmother down to participate. The room was filled with 15 men and women who had varying physical impairments. One of the aides who had organized the event asked if I would run the craps table, and before I knew it, I was sitting with a crowded group of energetic individuals and laughing and ← 7 | 8 →enjoying a competitive game of craps. I vividly recall that this moment brought a great deal of comfort to my mother, my grandmother, and me, as I started to realize that my fears about disability were due to my lack of exposure and knowledge. Disability was no longer the elephant in the room, and I was not turning away anymore from the societal notion of “imperfection.” I began to feel a strong need to spend time with my grandmother and the other men and women I had met at the center. I was visiting once a day after school and building relationships that, to this day, have played a pivotal role in my decision to study disability. I began to consider my relationship to representations of disability on television and to question the resulting perceptions I had developed regarding disability. This relates to Huntemann and Morgan’s (2001) discussion: “It is important to stress that young people also actively use media to define themselves, and media can help children and adolescents make sense of their lives as a form of self-socialization” (p. 312). This accentuates the way the media defined parts of my developing identity as I was receiving messages regarding differences that influenced my value system.
Phenomenology and Television Viewing: The Affect and Effect on Me
Although there is some dispute about the level of influence the mass media has on our perceptions of the world, there are relatively few who would argue that it does not have any. (Barnes, 1991, p. 46)
I watch a lot of television. Some nights, it consumes me to the point that one show bleeds into another, and I almost don’t know where one has stopped and the next one begins. As I have relied on television so much to be entertained and enlightened, I also have realized that its ability to represent the “other” (i.e., a woman in a wheelchair, a teenager living with Down syndrome, or a person with autism spectrum disorder) has huge gaps. Television was a huge part of my childhood. My Eastern European grandparents considered it to be a hero/teacher/friend of sorts, since it helped them learn English when they moved ← 8 | 9 →to the United States in their early 20s. One of my first memories was my Polish grandfather, in broken English, trying to solve the puzzle on Wheel of Fortune with only one letter on the board. Nine times out of 10 he would guess the phrase to be “Toot Toot Toot Sie, Goodbye.” My brother and I thought he was doing it to get a good laugh out of us, but looking back, I think he thought he had it nailed. To feel like he was “fitting in” to the cultural norm of television viewing, my grandfather worked hard to create a dialogue with the host of the game show and participate in the show’s spectacle. Television viewing was connecting my grandfather to my brother and me, since we all shared the joy of watching it together. Age, gender, and educational backgrounds were blurred as we were drawn into a simplistic, family moment. Postman (1994) describes: “The essential point is that TV presents information in a form that is undifferentiated in its accessibility, and this means that television does not need to make distinctions between categories ‘child’ and ‘adult’” (79).
Another early memory of television viewing was with my mother. An integral part of our relationship from the time I could hold my head up was her propping me up on her knee with one hand and folding laundry with the other while she watched her favorite soap opera, All My Children. I didn’t understand much of what was going on at age 2, but I did know that my mother was enraptured by the characters and the glamorous lives they led. The line between childhood and adulthood was blurred as television became a permanent fixture in my everyday experiences (Postman, 1982). Houston (2000) discusses the process of watching television using Freud’s concept of the ego, which primarily deals with the individual’s ability to make sense of his or her reality; creating a need for pleasure and satisfaction to be met immediately, the ego slows down this process and allows for organization of external objects and circumstances to be directed (Freud, 1923). In relation to television, Houston (2000) states, “It [television] offers an extraordinary promise of endless flow, which is repeatedly blocked for the spectator by interruption in the delivery of the text” (p. 204). She goes on to say that as the ego struggles to stay in control of the overflow of information and organize it, the actual object itself gets lost (Houston, 2000). As individuals are bombarded with various pictures, ← 9 | 10 →words, and symbols, the intended message from the producer often is lost as the viewer tries to keep up with all of the material being broadcast. In large part, media are a distraction from the everyday hustle and realities, an escape into another dimension, albeit temporary.
The comfort that television seemed to bring to our home influenced my later infatuation with it. Television gave us something with which to connect. Through watching television, the common, everyday housewife breaks out of her suburban container to go on a journey with exciting characters and fantasy situations, all the time believing that her daily activities of folding the laundry and cleaning up puke are a walk in the park compared to Erica Kane’s (Susan Lucci on ABC’s All My Children) multiple divorces and trust issues. The images and scenarios to which I was exposed at a young age avoided any representations of disability. Perhaps I would catch a glimpse of a character in the background of a scene sitting in a wheelchair or see a dramatic car accident in which a character becomes paralyzed and then, by some unforeseen miracle, becomes “cured.” The tragic “creation” of a disabled person always seemed to be a “worst-case scenario,” and a cure was demanded in the plot. I cannot remember a character becoming disabled and leading a fictional life as disabled for the duration of a show. This pattern of watching disability as an obligatory storyline, or for unrealistic melodramatic effect in soap operas, set a tone for me. I saw people with differences, but I did not understand their differences and capabilities. In the early 1980s, my parents purchased a VHS recorder, and my mother was able to record the daily soap opera episode and watch it with me before my bedtime. There was no more differentiation between what my mother and I were watching, and the television was left on for hours on end as a permanent fixture in my home. Postman (1982) suggests that “The plain facts are that television operates virtually around the clock, that both its physical and symbolic form make it unnecessary—in fact impossible—to segregate its audience” (p. 82).
Television became my built-in playmate. It ranked with my Barbie dolls, and I began to see my family and myself as caricatures on our own sitcom—The (Postman, 1985). As a TV star, I began to create my own television programs with anyone who was willing to accept a starring role. If they didn’t want it, the part would go to me. I became ← 10 | 11 →fascinated with my father’s bulky video camera. I was the master of my domain, and I could recreate anything I saw in a television show and make it my own (Simpson, 2004). I was living in and through a true media culture, basing much of my understanding of family life, schools, and relationships on what I was seeing on television. I was identifying myself with television and building my experiences around its media representations. Kellner (1995) provides some insight into this common phenomenon: “A media culture has emerged in which images, sounds, and spectacles help produce the fabric of everyday life, dominating leisure time, shaping political views and social behavior, and providing the materials out of which people forge their very identities” (p. 1).
As I grew, I realized more and more that television helps create the prototype that society has accepted as “normal,” and it has become so innately constructed that it is rarely questioned. Thus, as my relationship with the media continued to develop, I recognized that Manhattan, New York, was the best place in which to pursue my interest and passion for this television culture (Gauntlett, 2002/2008).
Shifting Careers: Building a New Foundation
The lights; the skyscrapers; thousands of people crowding the streets to get to their destination, be it work, a show, an art gallery, or rehearsal, make New York City a place unlike any other in the world. It is a mixture of high and low cultures. One has to compete with the intensity of a prizefighter to make a mark, but if desired badly enough, greatness is attainable. I always have felt a connection to Manhattan. I grew up 35 minutes north of “The City” and would often take trips into the city after school to see a Broadway show or a ballet. I was infused with artistic culture by my parents, and like most young girls in my neighborhood, I was enrolled in dance classes from the time I could walk. Theater classes came later, but the feeling of wanting to break out of my shell and exude excellence was creeping up faster than I could contain it. Living so close to a place that contained so much opportunity for greatness placed me in a position to want to reach for it. As Frank ← 11 | 12 →Sinatra reflected, “If you could make it there, you’ll make it anywhere” (Ebb & Kander, 1977).
As my fascination with television grew, it became such a fundamental part of my life that I applied for the Mass Media in Communications program at New York University to study the science of television viewing. There, I was thrust into the world of theories regarding the implications of watching television and the manipulation of the media to present a message to an audience that would ultimately result in consumption of a product or ideal lifestyle. Postman (1985) suggests that
Television is our culture’s principal mode of knowing about itself. Therefore—and this is the critical point—how television stages the world becomes the model for how the world is properly to be staged. It is not merely that on the television screen entertainment is the metaphor for all discourse. It is that off the screen the same metaphor prevails. (p. 92)
As I was using television to educate me on the various situations and ideologies being formed, it was a compelling indicator of how much my consumption and the values systems I had built were based on its influence.
Jenkins (2006) points out that “once a medium establishes itself as satisfying some core human demand, it continues to function within the larger system of communication options” (p. 14). As I gathered more information and the realities about media began to take shape, I began to feel disillusioned about my career choice and more curious about how the media dominated the reality I was living and its impact on my conscience.
I started doing production internships at big corporations: ABC, Viacom, and the New York Times, as well as some small-scale public relations firms in lower Manhattan. I felt myself caught up in the notoriety that came with these big names. My perceptions of television became more negative as I realized the power of corporations to influence them, thus making me second-guess my decision to make this a lifelong career.
After graduation in May 2002, I began working as an assistant publicist for business books with the publishing company HarperCollins. ← 12 | 13 →I was catapulted into a world of cutthroat work ideals that would include late nights, brownnosing, and a lot of letdowns. The world I was building around media was straying far from what my childhood imagination thought it would be. I turned my attention to education, an interest that had always crept in and out of my life, and set new goals for what I thought was important: educating children through the media, using it as a tool to learn rather than as a narrow escape. Thinking back to my father’s positive experiences as a teacher, I felt pride and admiration. It was a feeling that motivated my future decisions about working in an educational context where I hoped to leave my mark on students with various learning abilities and differences.
Recalling an Anecdote from My Father
I remember it like it was yesterday—it was 1989, and I was nine years old. Jack, my father, a fairly tall, athletic man, would come home from teaching school around 4:30 p.m.; sometimes he would run to teach at his second job, which was Holocaust studies at a reformed Hebrew school, or to play basketball with a group of men around his age. On this particular evening, my family—consisting at the time of Jeremy (a brother five years older than me) and my mother Randi—had the opportunity to sit down together for a hot meal and reflect on our day. Most nights this would happen with the hum of a small, beat-up, 20-inch, black-and-white television on the kitchen countertop, which needed a hit every five minutes to stop the picture from scrambling. But tonight, my father wanted it off, and although he generally liked to disconnect from his school day and just relax and talk about sports or the most recent funny episode of Married with Children, tonight he wanted to share his challenging encounter with a boy I will call Adam, an 11th grader. My brother and I were not really sure how to take it. We were used to kicking each other underneath the table during “family dinners” and rapidly finishing our meals so we could go back to playing Nintendo.
However, this time, things seemed different. Adam, as my dad began to tell us, came from a dysfunctional family, and this, in turn, led ← 13 | 14 →him to suffer from emotional delays, which affected his ability to function in school. My father had been asked by the chair of the special education department of his high school to accept Adam as a member of his journalism class. She hadn’t given him many details about Adam’s background, but she felt that he had a lot of untapped potential. My father, generally a pragmatist, also had a son around Adam’s age and felt that he could potentially be in a position like Adam’s one day. He reluctantly agreed and said that he would give Adam a chance to shine.
The next day, Adam entered Dad’s class. Dad described him to us as a shy, almost reclusive young man who crept to a seat in the last row of his classroom. During the class, he explained the requirements of the writing course to the students: as the writing class, they were responsible for publishing the school newspaper. As a result, the students were required to fill the various jobs of making a newspaper (e.g., reporters, editors, photographers, etc.). By the end of the class, Adam was the only pupil who had not volunteered for anything. He sat timidly at his desk with his head bent forward and his shoulders hunched. After my father dismissed the class, he asked Adam to stay so he could speak to him about his problem. Adam explained that he did not want to write anything that the school would read because he had heard countless times that he was “stupid,” “incapable,” an “underachiever,” and “a waste of time.”
My father told Adam that he had a lot of reflecting to do and that he wanted him to come back to class tomorrow ready for a challenge. The next day, my father told Adam that he had thought it over and would make a deal with him. If he were willing to write a story for the paper, he would allow him to use a pen name so that no one would know who wrote it and that it would give him the freedom to critique anything he wanted. Begrudgingly, Adam agreed, and he wrote a scathing article criticizing school policy. Not only was it well written, it also had a maturity about it that proved that Adam had a latent talent for writing. Adam chose the pen name The Terminator. After the paper was published, no fewer than 20 students came to Dad’s office to inquire as to the identity of the writer. When my father mentioned it to Adam, he was shocked to the point of disbelief. For the first time in his life, he had been recognized and complimented ← 14 | 15 →for something he had done. This lit a fire under him, and he began working on his next article while others in his journalism class went to him for ideas and editing advice. Adam decided not only to be a writer but also an editor for the newspaper. His shyness faded and the wall of mystery came down as he confessed to the school who he was. He started walking the hallways with a confident swagger, and he actually started making friends. His turnaround was so profound that at Adam’s request, the principal allowed him to take my father’s journalism class for a second year as an advanced class. For his senior year, Adam became editor-in-chief and ran the entire newspaper. At the conclusion of his story, my family and I felt deep pride and admiration for both my father and Adam. For the first time, I saw my father’s profession as a tool to empower those in difficult learning situations and give them a voice. According to Kincheloe (2005b), “Advocates of critical pedagogy are aware that every minute of every hour that teachers teach, they are faced with complex decisions concerning justice, democracy, and competing ethical claims” (p. 1). It becomes the responsibility of the educator to know the background and situation of the students, and this will allow for a deeper understanding and more effective way to teach, as each student carries with him or her a past and a story.
Cultural theorist Paulo Freire’s (1970) influential Pedagogy of the Oppressed examines the importance of empowering students with differences. Freire discusses the power of the perspective of humanization, especially since society is so rapidly becoming dehumanized. Freire states, “Within history, in concrete, objective contexts, both humanization and dehumanization are possibilities for a person as an uncompleted being conscious of their incompletion” (p. 43). My father’s guidance to help Adam fulfill his hidden potential by creating a trust between them contributed to “humanizing” Adam. As a result, Adam was able to build the confidence he needed to and grow his latent aptitude.
Through the years, I asked my father about Adam, always eager to hear about where he was going and what he was doing. My father informed me that after Adam graduated from high school, they stayed in touch while Adam was in college. Adam was a rising star ← 15 | 16 →at the university as well. He began as a writer for his school newspaper, and by his senior year he was editor-in-chief. After graduating from college, Adam achieved his ultimate goal: he became a sports writer for a local Connecticut newspaper. My father was proud of the strides his student had made from being a battered, emotionally broken-down, introverted adolescent to a consummate, confident professional. My father and Adam eventually fell out of touch. One evening, out of the blue, my father was contacted by Adam’s mother, who after months of looking for my dad told him that Adam had just written his first sports book. She requested that he surprise him at a book signing, where he would be equally surprised at the great honor of having Adam dedicate his book to “the teacher that guided him.” This moment from my father’s career turned my thoughts toward education and the needs of students, as I realized that so much of a student’s success or failure relies heavily on the teacher and that all-important connection and trust between a teacher and a student. Much of the research indicates that a positive relationship between a teacher and student positively influences a student’s performance and overall attitude. Adam’s story helped me realize how vital a healthy student/teacher relationship could be. It made me realize that teaching students involved far more than just presenting information. A quality teacher takes the time and effort to establish a trusting relationship with his or her students. My perception was forever changed, and I never looked at teaching or teachers again in quite the same way (Niebur & Niebur, 1999).
Stepping into Inclusion
Public debate over the role of media usage in shaping values and attitudes increases every year. Numerous studies have demonstrated predictable correlations between school performance and children’s use of media. (Dorr & Rabin, 1995, p. 323)
While New York kept my energy high and my cultural addictions fed, I felt a part of me was not being fulfilled. I always had a deep ← 16 | 17 →connection to education and kept it in the back of my mind as I navigated career paths. I owe this to my father, a successful English teacher for more than 30 years who passed his passion and energy on to my family and me.
The work of Paulo Freire influenced my life during the first year of my doctorate journey. In reflecting on his theories about education and human beings, I was reminded of a quote from Pedagogy of the Oppressed (1970): “Man’s ontological vocation is to be a Subject who acts upon and transforms his world, and in so doing moves toward ever new possibilities of fuller and richer life individually and collectively” (p. 32). Freire’s words sum up what has helped guide my transition from entertainment to academia, as I became both a student and a special education instructor working with students.
When I came to McGill University in 2004, I was eager to start the master’s program in inclusive education in the Department of Counselling and Psychology. Admittedly, I felt I didn’t fit because my bachelor’s degree was in Mass Media and Communications Studies. My only real knowledge of children and education came from the day care centers that I worked in intermittently after graduation. I didn’t really know what I was getting myself into. I was thrust into a world quite different from the one I had known during my schooling in New York.
In a course called Special Needs 1, I was able to make connections to my past experiences with disability and get more in-depth explanations for the various syndromes, disorders, and deficits that affect millions upon millions of children and significantly impede their ability to learn and be understood. An opportunity to work in an inclusive setting with a child diagnosed with severe learning deficits and emotional problems became available to me through some early-intervention work I had been doing in various Jewish kindergartens around the greater Montreal area.
As I observed the child—in grade 4 with his six other classmates, one lead teacher, and one assistant who spent part of their day out of the “mainstream” classroom while the other students in the school learned French, English, and Hebrew—I became engaged with how these students embraced their learning environment and was fascinated with ← 17 | 18 →their ideas about how they learn and how they perceive themselves as alternative learners in comparison with the other students in their school. The students in the special needs classroom had disabilities including problems with decoding, language and processing delays, attention deficit disorders, and low self-confidence. In the special needs classroom, the students would have an opportunity to work in smaller groups on social skills, reading, writing, mathematics, language acquisition, and building self-confidence. I spent four months in the special needs classroom and was more challenged working one-on-one with my fourth grader than I had been working in any other sphere. With the rigor and intensity of learning in the Jewish elementary school, the inclusive students merged with the other students during cultural celebrations, some English instruction, physical education, lunch, and recess. The remainder of the time, the inclusive students followed individualized education plans (IEPs).
In trying to find the most effective mode to educate my student and help him grasp simple concepts, I was challenged to connect with him in areas in which he was interested, for example, computers, cartoons, and popular movies. As the cultural psychologist Lev Vygotsky (1987) notes, “The teacher must orient his work not on yesterday’s development in the child but on tomorrow’s” (p. 211). Due to ongoing difficulties at school, in and outside of the classroom, most of these children have lost their motivation for learning and are more interested in keeping up with the status quo. They desire the newest gadget and/or the most popular computer game and television show being talked about rather than learning basic math or sitting down to complete a skill builder’s worksheet.
The American Academy of Pediatrics (2013) points out that “[i]n a matter of seconds, most children can mimic a movie or TV character, sing an advertising jingle, or give other examples of what they have learned from media.” (p. 1). As our time working together came to a close, I felt I was being pulled away from children who were extremely misunderstood and misrepresented. Hoechsmann and Low (2008) argue for the importance of situating literacy and listening to words that children speak to get a sense of their cultural context. This type of ← 18 | 19 →discourse was not happening within this classroom, and the students were frustrated and the teachers impatient.
By some incredible twist of fate, the future of the special needs classroom was undergoing some major restructuring, because the success rate and comfort of the students was not satisfactory. The timing was perfect. I would be graduating from McGill with a master’s degree in inclusive education that May, and I was asked by the administration if I would become a lead teacher in the fall in the expansion of the special needs classroom. I accepted the position because I felt that I could use the opportunity to employ media to motivate different learning styles, and to explore the way ideologies and beliefs were shaped by students. This opportunity was the beginning of my explorations with representation of disability in the media. I began to critically study and practice in areas of inclusion and special needs learning in the classroom. I did this by observing children and gaining more personal insights into their family backgrounds and past learning experiences. I learned that a large body of research and knowledge related to education and pedagogy was available for a world that would fundamentally affect my role as an educator. Exploring pedagogy more in depth, I yearned to work more closely with students and bring learning to life, giving each student the room to grow and discover his or her strengths at his or her own pace. To me, pedagogy, inside the classroom, enhances the effectiveness of education by allowing each student to express himself or herself individually and not be an automaton (Freire, 1970).
Informing the Informer
After I realized that part of my life journey would involve the study of disability in the media, I began to research the various theories and methodologies associated with this discipline to help ground my work and provide a basis from which to begin. To do this successfully, with the help of my supervisor Dr. Shirley Steinberg, I was introduced to social and critical theory. Understanding the foundational theories of critical theorists such as Baudrillard, Postman, McLuhan, Freire, Gramsci, Corker, Kellner, Giroux, and Kincheloe would help inform ← 19 | 20 →the work I intended to do in my graduate study. Complementary to these theorists are the concepts and epistemologies they built to help their audiences understand the areas they are critiquing. To support my intention to become a rigorous researcher, I have adapted these concepts to my own interest in the representation of disability and its role in the media (Kincheloe & Berry, 2004).
Influence of Functionalism
The theoretical concept of functionalism is used widely in contemporary sociological studies to explain the systematic elements needed to maintain organization and function (Flecha, Gomez, & Puigvert, 2003). The purpose of applying functionalism to the larger framework of my research on disability representation on popular television is to build on the conceptualization of societal norms as they are applied collectively to individuals. Regarding early functionalism circa the 1950s, social science had close ties to the biological sciences in that just as physical science uses the digestive system, nervous system, etc. to organize itself, so does social science use the functioning of social systems based on the organizing principles of politics, capitalism, etc. In terms of disability, individuals are placed within “systems” and “structures” that map out where they should go as a way to define their usefulness to society: “The function of structures is to contribute to the maintenance and adaptability of the systems which they belong” (Flecha et al., 2003, p. 9). Generally, functionalists argue that a certain degree of inequality is functional for society as a whole, and that society could not operate without a certain degree of inequality.
Social theorists such as Talcott Parsons (1951) and Émile Durkheim (1960) have made significant contributions to the development of functionalism. Parsons’s interpretation of the doctor/patient role and the impact of “sickness” on the rights and responsibilities of the patient contributes a great deal to how functionalism has influenced the development of disability theory (Barnes, Mercer, & Shakespeare, 1999).
← 20 | 21 →Although functionalism has a solid foundation in the social sciences, it has been criticized as being a conservative theory that favors previous social structures that continue to dominate our present. Overall, there is no way to empirically argue the validity of certain social systems such as family, or employer and employee status, which undermines the validity of functionalism. These are systems that are not replaceable by other, more efficient means (Flecha et al., 2003).
How to Account for Representation
The “representation of the Other” is a significant concept of cultural studies that has further influenced my research. The concept of representation implies a concrete form based on a system of signs: “The representation entity outside the self—that is, outside one’s own gender, social group, class, culture or civilization—is the other” (Sardar & Van Loon, 2010, p. 13). When applied to disability, the representation of the other signifies the uncommon denominator that is disability as it falls out of the “norm” of Western society. The influence of postmodernist and poststructuralist paradigms, on both cultural studies and critical disability studies in education, has used the concept of the “other.” Within this framework, the term difference has added yet another dimension to representation. Garland-Thomson (2009) states, “Because we come to expect one another to have certain kinds of bodies and behaviours, stares flare up when we glimpse people who act in ways that contradict our expectations” (p. 6). In fact, “the construction of difference” and the “process of assigning value to difference” are central to the understanding not only of disability but also of many other forms of oppressive beliefs (Rothenberg, 1998, p. 281).
The systems that produce representation are the cultural circuits through which meanings are transmitted. As individuals coast through their everyday lives, the means of representation embody concepts, ideas, and emotions in a symbolic form that can be transmitted and meaningfully interpreted. Some important systems of representation include the media in all its forms—especially television and the print ← 21 | 22 →media—films and videos, music lyrics, museum exhibitions, and all aspects of society characterized by “text and talk” (Lemesianou & Grinberg, 2006).
To maintain an awareness of myself as an avid television viewer with a background in mass media and communications theory, I am always taking a step back from my initial reaction to what is being implied through the message. As Lemesianou and Grinberg (2006) state, “the point is that representations always convey meaning and that meaning is contextual and contingent to its milieu” (p. 222). Every day, society is saturated with hundreds of media images in which individuals or whole groups of people are featured and looked upon within a particular context, often perpetuating a “norm” set up by a power producer (Kellner, 1995).
Within a postmodern framework, there are some significant ideas/theories/perspectives on how disability should be represented. What has been analyzed thus far does not necessarily emphasize the important areas in need of research. For instance, North American theorists and those theorists from Great Britain differ in the definitions and contextual frameworks they use. American theorists such as Hahn (2010), Albrecht (Albrecht, Seelman, & Bury, 2001), Amundsen (1992), Rioux and Bach (1994), Davis (2013) and Wendell (1996) explored significant and critical frameworks of disability from aspects ranging from social/cultural to political but have not done much work to modify the current definitions of “disability.” This differs somewhat from the British point of view, including Hasler (1993), Barnes (1991), and Oliver (1990, 1996), who place more emphasis on the social model of disability over the biological interpretation (Shakespeare & Watson, 2002).
It’s a Sign of the Times: Structuralism
The structuralists and their heirs embrace language as the dominant model for theorizing representation, interpreting nearly all symbolic behavior in strictly linguistic terms. (Siebers, 2008, p. 2)
Based on the work of Ferdinand de Saussure, structuralism is linguistic in origin and reflective of cultural systems and signs that are ← 22 | 23 →analyzed for their structural relationships. Flecha et al. (2003) describe structuralism as having “objective structures, independent of the agents’ consciousness and will” (p. 36). Sociologist and educator Pierre Bourdieu was one of the main contributors to the theory known as structuralism. Bourdieu argued that individuals as agents of society are unable to freely choose their realities. Two central concepts developed by Bourdieu are habitus and cultural capital. Habitus is described as a “structuring structure that organizes the practices and perception of the practices” (Flecha et al., 2003, p. 17). Cultural capital is the ability to “read and understand cultural codes” (Sardar & Van Loon, 2010, p. 72).
The effect that structuralist theory has on critical disability studies in education is twofold:
First, because linguistic structuralism tends to view language as the agent and never the object of representation, the body, whether able or disabled, figures as a language effect rather than as a causal agent, excluding embodiment from representational process almost entirely. Second, theorists influenced by the linguistic turn infrequently extend the theory of representation from mimesis properly speaking to political representation. (Siebers, 2008, p. 2)
Looking at the poststructuralist analysis of deconstructing language and interpreting hidden representation has helped “give voice” to those who are powerless (Barnes & Mercer, 2003). All too often, disability is lumped together with sexuality and race and is never quite on its own footing in the social sciences discourse (Corker & Shakespeare, 2002). As more and more questions about marginalized individuals arose, Roland Barthes (1964) contributed to this ongoing conversation by asking: What is the process by “which men give meaning to things?” Barthes argues:
Of course the world has never stopped looking for meaning of what is given it and of what it produces; what is new is a mode of thought (or a “poetics”) which seeks less to assign completed meanings to the objects it discovers than to know how meaning is possible, at what cost and by what means. Ultimately, one might say that the object of structuralism is not man endowed with meanings, but man fabricating meanings. (p. 1130)
The Acculturation of Media
Media culture falls under the umbrella of cultural studies and imposes its own set of criteria for a definition. Kellner (1995) argues, “Media culture in the United States and most capitalist countries is a largely commercial form of culture, produced and disseminated in the form of commodities” (p. 16). Popular artifacts are produced for public consumption, and therefore, they become the dominant value system of individuals. Baudrillard (2003) made the claim that
the entire society is organized around consumption and display of commodities through which individuals gain prestige, identity, and standing. In this system, the more prestigious one’s commodities (houses, cars, clothes, and so on), the higher one’s standing in the realm of sign value. (p. 313)
Keeping in mind the specific agendas that the culture industries explicitly place on societal values helps us understand the “social discourses which are embedded in the key conflicts and struggles of the day” (Kellner, 1995, p. 14). Also, a closer examination of contemporary culture and popular texts, for example, television programs, hip-hop music, celebrities, and top news stories, will help draw together dominant ideologies that help shape culture and society (Kellner, 1995).
The complex way of sending and receiving messages at rapid speeds through various media outlets has helped support the powerful impact of the media and culture discourse. McLuhan (1967) and Sardar and Van Loon (2010) describe four basic components of the media industry involved in the packaging of messages and products:
- The message or product itself
- The audiences who imbibe the message and consume the products
- The ever-changing technology that shapes both the industry and the way the message is communicated
- The final look of the product (p. 155)
What appears to be common-sense dissipates slowly into the ether, as electronic media refract the world in ways that benefit the purveyors of power. We have never seen anything like this before, a new world—new forms of social regulation, new forms of disinformation, and new modes of hegemony and ideology. In such a cyber/mediated jungle new modes of research are absolutely necessary. (p. 117)
As a student of the media, I am particularly interested in why culture, specifically popular culture, has had a substantial impact on society and why so many of us have come to know (or think we know) the “truth” based on what we absorb from the media. According to Steinberg (2006), “Mass Culture is imposed from above. It is fabricated by technicians hired by businessmen; its audiences are passive consumers, their participation limited to the choice between buying and not buying” (p. 118). This theory about the fabrication of mass culture will be useful for grounding my point of view about disability as I examine how disability is represented in the media. As I grapple with my position and my personal connection to disability, I find myself asking questions about the responsibility of media to its audience and whether media responsibility is even an issue. Have significant strides been made in this area, or are we still watching a silent struggle over what is perceived and what is an accurate representation? There is no such thing as “fair” and “balanced” so long as the corporate world wields such enormous control over what “reality” is being disseminated.
My intention for this chapter was to weave into my personal narrative various concepts of critical theory, to become a bricoleur—one who draws from different areas of research to create a meaningful body of work—and bridge the gap between academia and personal narrative. Foucault (1984) defines “techniques of the self” or “arts of existence” as
← 25 | 26 →those reflective and voluntary practices by which men not only set themselves rules of conduct, but seek to transform themselves, to change themselves in their singular being, and to make of their life into an oeuvre that carries certain aesthetic values and meets certain stylistic criteria. (pp. 10-11)
The motivational force behind certain bodies of work and the desire to achieve more in the field of academia is significant when doing a self-reflective study like this one. Weiner (1992) uses the metaphor, “people are scientists, trying to understand themselves and their environment and then acting on the basis of this knowledge” (p. 2). Looking at the self also raises questions about ideology and power. The dominant discourse in my case is disability and television and the deep-rooted effects that representations of disability on television have had on my consciousness. A theoretical examination of ideology and how it influences/creates societal norms is crucial when defining media culture, as Kellner (2003a) argues: “Ideology assumes that ‘I’ am the norm, that everyone is like me, that anything different or other is not normal” (p. 61). According to Kincheloe (2005b), ideology is “meaning making that supports forms of dominant power” (p. 2). Representation commands our everyday encounters as a direct influence on our belief systems.
As I pull together the pieces of the puzzle that have brought me to my current place in society, I am faced with some conflicting issues, which include wanting to use the media not only for entertainment and educating elementary and high school students but also being mindful of the negative influences and overdependence of individuals on the media for their access to information. In this introductory chapter, I have recounted my earliest memories of media and disability and connected them with the various stages of my development through childhood and into adulthood. I have discussed the paradigm shift that I experienced as I moved from the glitz and glory of a career in high-energy, fast-paced New York City to a more grounded career working in education with children who have learning differences in a private Jewish elementary school.
In the chapters that follow, I provide a literature review, a further expansion and articulation of my chosen methodology (bricolage), and ← 26 | 27 →an in-depth analysis of media representations of youth with disabilities on popular television programs. The goal of this study is to create awareness of marginalized groups and look at the limitations and strengths of disability representations.← 27 | 28 →
← 28 | 29 →Chapter Two
Stereotype assumptions about disabled people are based on superstition, myths and beliefs from earlier less enlightened times. They are inherent to our culture and persist partly because they are constantly reproduced through the communications media. We learn about disability through the media and in the same way that racist or sexist attitudes, whether implicit or explicit, are acquired through the “normal” learning process, so too are negative assumptions about disabled people. (Barnes, 1992, p. 5)
The focus of this chapter is an examination of the various theories and philosophies that both support and discredit the use of media as a tool for empowering individuals living with disabilities. I look at network television as a form of popular media that has become a driving force in the portrayal and propagation of the various roles and stereotypes of contemporary culture. This approach allows me to explore the power ← 29 | 30 →of this media in representing marginalized groups and in transmitting its messages to children/youth and to delve deeper into how the standards that the media have constructed might influence the development of the self-image of individuals living with disabilities.
Individuals living with disability often are misrepresented and discriminated against because of their differences (Barnes, 1991). For a generation that relies heavily on the media for introduction and exposure to marginalized and underrepresented groups, it becomes essential to acknowledge how media affect the masses. Television, and in particular network television (ABC, CBS, FOX, NBC, etc.), is central to our daily lives. Watching television gives an audience a media/socially constructed view into the lives of individuals from various religious, ethnic, sexual, and economic backgrounds. With that phenomenon in mind, through my research, I examine the influence of media on disability and how media works to socialize disability. This chapter has four key sections that discuss the most important concerns of disability and media studies. I begin with an introduction that explains why I chose disability and media as my topic of interest. Next, I look at disability studies and how the “disabling image” was created and reinforced by the rise of television. This is followed by a historical overview of television as a socializing tool for youth that influences popular culture and serves as a means to teach critical pedagogy and educate youth. Last, to build a strong foundation for the remainder of the study, I summarize my literature review, which examines the theories that have been formulated to understand the discourse on disability in the media.
The Importance of Looking at Disability and the Media
Contemporary human beings obtain a great deal of cultural information from television, which affects the ideological development of the self and remains palpable as schooling begins and connections are made between individuals. Many studies have examined the long-term effects of television viewing on the behaviors and attitudes of ← 30 | 31 →individuals (Gebner, Gross, Morgan, Signorielli, & Shanahan, 2002; Jenkins, 2006). It is important for researchers to take note of the absence or misrepresentation of marginalized groups (i.e., television characters with disability), as their representation has been minimal at best. This absence is significant given that more than 10 percent of the world population lives with some form of disability (World Health Organization, 2010). This population is affected by the many distorting images carried by the media. For example, Goggin and Newell (2003) point out that “[i]ndeed we can see that increasingly TV as a sociopolitical space has disabled people, but because of its dominant understandings and power relations we located the blame with deviant individuals we know as disabled” (p. 90). The way that television mirrors popular culture has led me to question its ability to accurately represent disabled youth. The standards of the mainstream media still seem to represent white, thin, able-bodied, attractive individuals. The overarching question examined here is: How are youth with physical or emotional differences represented in the media? Since the Internet and social media play such fundamental roles in the everyday lives of young adults, and new methods have arisen to express ideas, issues, opinions, and current events, it is the role of educators and activists to start a conversation about the effects of these media representations, which wield a great deal of power to shape the beliefs of individuals.
- X, 147
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- 2016 (March)
- New York, Bern, Berlin, Bruxelles, Frankfurt am Main, Oxford, Wien, 2016. X, 147 pp.