Arts and Humanities

Brenda Jo Brueggemann

• Publisher: SAGE Publications, Inc
• Year: 2012
• Print ISBN: 9781412988186
• eBook ISBN: 9781483305929
• Edition: 1
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

This volume in The SAGE Reference Series on Disability explores the arts and humanities within the lives of people with disabilities. It is one of eight volumes in the cross-disciplinary and issues-based series, which incorporates links from varied fields making up Disability Studies as volumes examine topics central to the lives of individuals with disabilities and their families. With a balance of history, theory, research, and application, specialists set out the findings and implications of research and practice for others whose current or future work involves the care and/or study of those with disabilities, as well as for the disabled themselves. The presentational style (concise and engaging) emphasizes accessibility. Taken individually, each volume sets out the fundamentals of the topic it addresses, accompanied by compiled data and statistics, recommended further readings, a guide to organizations and associations, and other annotated resources, thus providing the ideal introductory platform and gateway for further study. Taken together, the series represents both a survey of major disability issues and a guide to new directions and trends and contemporary resources in the field as a whole.

One

---

Introduction, Background, and History

Elizabeth Brewer, Brenda Jo Brueggemann, Nicholas Hetrick, and Melanie Yergeau

Part 1: Models of Disability

It might not be possible to explain the idea or give examples of models of disability if it were not for some important events of the 1960s. Both the civil rights movement and second-wave feminism—the first wave was earlier in the 20th century, and women’s suffrage was among its achievements— set a precedent for disabled people to demand equal rights in the face of widespread prejudice. Advocates of racial and ethnic minorities and of women had developed a critique of prejudice based on the notion that members of these marginalized groups are not marginalized because of anything inherent to members of the groups, but rather because of misguided beliefs about them and the practices and policies those beliefs engender. Those attitudes, assumptions, and the actions they motivate are the product of historical trends, social conventions, and false ideas about minority groups and their members. While there is a wealth of current work taking place on disability issues in a global context, this volume focuses mostly on an American context.

From that American context, in 1966, sociologists James L. Berger and Thomas Luckmann published The Social Construction of Reality, which argues that all social patterns are based on concepts people develop over a long history of group interactions and the roles members of a society imagine for themselves and for others. Berger and Luckmann’s explanation of the relative nature of both knowledge and social conventions provided a foundation for civil rights advocates. Although ideas about the social construction of reality and knowledge had been around for millennia, in the 1960s and beyond, minority groups and many others embraced what has come to be called social constructionism. Social constructionism is an important backdrop for thinking about models of disability. If knowledge about society and its members is flexible, then we can emphasize different parts of the disability experience in ways that lead to very different conclusions about what disability means and how we ought to interact with disability in our world.

For example, if we think of disability as a primarily medical phenomenon, we are thinking through a medical model of disability. Under this paradigm disability is a property of human bodies, a deficit or lack in the human body that belongs to the individual whose body it is. The medical model views disability as a departure from the normative functioning of healthy human bodies. Medical professionals are best equipped to address disability, and they do so as they would illnesses and diseases. In the event that the medical professional cannot provide a cure, the disability is considered “chronic” or, in instances where an individual was born with her disability, “congenital.” In the humanities, the medical model often relates to areas of inquiry such as medical ethics, medical humanities, or some studies of illness in narrative. New York University’s School of Medicine, for example, has a medical humanities division dedicated to the way artworks and humanities scholarship contribute to the practice of medicine. Similarly, Columbia University has a program in Narrative Medicine, the aim of which is to incorporate narratives of illness, disease, and disability into medical practice. Thinking through the medical model in the arts might also lead to an interest in art or music therapy. Oliver Sacks’s “medical anthropology” books, like The Man Who Mistook His Wife for a Hat (1985) and An Anthropologist on Mars (1995), are good examples of popular literature rooted in the medical model: Sacks writes from the perspective of a neurologist even as he “humanizes” the individuals profiled in his books. In all of these cases, artworks and humanities scholarship on disability serve medicine as the central paradigm under which to think about disability. While the medical model is the dominant paradigm for thinking about disability today, it finds its most substantial counterpart in the social model.

Under the social model, disability is socially constructed. Inaccessible buildings, inflexible educational systems aimed at students who learn only in certain ways, prejudicial attitudes, and other features of society disable people with certain types of bodies. For people thinking through the social model, disability is best addressed through efforts at rendering those social features more accessible so that disabled people can participate as full members of society. If disability is a social product, then people’s bodies are not inherently defective or ill. Rather, bodies do not have attached qualitative values, but only the potential to participate or not participate in the life of a society depending on how that society is arranged.

Artists thinking according to the social model might produce work that thematizes or directly represents problems of access and prejudice. Many contemporary autobiographies and memoirs written by disabled people provide useful examples, such as Stephen Kuusisto’s Planet of the Blind, in which he describes the liberating experience of training with a guide dog in order to enable confident movement on busy city streets not designed with blind people in mind. Working with a dog in harness, he says, “For the first time I feel the sunken lanes under my feet. The street is more my own. I belong here… . The harness is a transmitter, the dog is confident… . I am choosing to be blind in a forceful way” (Kuusisto, 1998, p. 171). In Kuusisto’s case, adapting his environment by using a service animal empowers him to navigate the world confidently, albeit differently than sighted people. With this accommodation, what formerly disabled him—the fact that the environment is designed for people who can see— no longer does.

Similarly, Georgina Kleege opens her 1999 collection of essays, Sight Unseen, with the eye-catching claim, “Writing this book made me blind” (p. 1). She goes on to explain that she did not, in effect, lose her sight in the process of writing this book, but rather that in the essays that follow, her exploration of the historical, cultural, linguistic, and media representations of blindness brought her to proudly claim for herself the identity of “blind.” John Hockenberry also explores the socially constructed nature of his own disability in “Fear of Bees,” a frequently reprinted essay from his 1995 book Moving Violations. In answer to “people want to know what I want to be called,” Hockenberry opens this essay with a nearly three-page rant about the “names” for his life and “condition” that are often contradictory. He writes, for example, “I am a former food stamp recipient. I am in the 35 percent tax bracket. I am part of the disability rights movement. I am a sell-out wannabe TV star media scumbag who has turned his broken back on other crips” (p. 88).

Legal historians working under the social model might survey legislation directed at people with disabilities and thereby discover the ways that political systems have disabled people at different points in history. For instance, in his Why I Burned My Book and Other Essays on Disability (2003), Paul K. Longmore analyzes the progression of disability rights activism through the lens of the social model. He says, “The movement of disabled Americans has entered its second phase. The first phase has been a quest for civil rights, for equal access and equal opportunity… . The second phase is a quest for collective identity” (p. 221). Longmore’s argument is that disability rights activists, starting with New York City’s League of the Physically Handicapped in the 1930s, use the social model to argue for accommodations and access to, for example, employment opportunities and public places, since inaccessibility disables people more than any inherent limitations.

People interested in aesthetics, meanwhile, might look at a building and investigate the assumptions its design reveals about bodies and how they move, or perhaps about what constitutes “beautiful” proportions in a built environment. In his 2008 book Disability Theory Tobin Siebers describes his home in Ann Arbor, Michigan, in order to demonstrate that there is a “one-to-one correspondence between the dimensions of the built environment and … the body invited inside as opposed to those bodies not issued an invitation” (p. 85). By pointing out the dimensions of doors, the heights of light switches and door handles, Siebers reveals that architectural practice and preferences are based on assumptions about human bodies. He says thinking about private spaces in this way is important because “the greatest cruelty of inaccessibility remains the fact that people with disabilities are excluded from the private spaces where most intimate gatherings occur—dinner parties, children’s birthday parties and sleepovers, holiday meals, wakes, Shiva, and celebrations of births, anniversaries, and weddings” (pp. 85–86).

The medical and social models are the most prominent paradigms for thinking about disability, and they are often held in tension with one another. However, there are other important and useful ways of thinking about disability, especially within an identity model. Under the identity model, disability is a marker of membership in a minority identity, much like gender or race. In order to think through an identity model we must have an operative definition of what constitutes disability, no matter how complex or conflicted that definition might be. This definition must allow for both individual and collective/community experience.

Under an identity model, disability is primarily defined by a certain type of experience in the world—a social and political experience of the effects of a social system not designed with disabled people in mind. This experience is individual but more often than not has some resonance with others who may be or become part of one’s identity group. Because the disability experience is socially constructed, the identity model largely depends on the social model. The difference between the social model and the identity model is that the latter claims disability as a positive identity, a way to describe oneself and to be part of a community, in a way that the former does not by definition entail. Once someone has claimed disability as a positive identity marker, it becomes more feasible and desirable to produce art that celebrates human variation than it would be under a medical model.

For example, Simi Linton’s Claiming Disability (1998) explains and celebrates disability identity as “the social and political circumstances that have forged [disabled] people as a group” (p. 4), and her memoir My Body Politic (2005) is an ebullient celebration of disability identity. Again, while the identity model owes much to the social model, it is less interested in the ways environments, policies, and institutions disable people, and more interested in forging a positive definition of disability identity based on experiences and circumstances that have created a recognizable minority group called “people with disabilities.”

We do not mean to suggest that these models are exclusive of one another, that these are the only models of disability (we could also discuss, for instance, a moral model, a charity model, and an economic model), or that one is clearly preferable to the others for disability studies. On a theoretical level it is possible to separate these models as we have done here, but it will become clear as we discuss examples of art and scholarship throughout the rest of this volume that we almost always draw on multiple models of disability, whether unconsciously or by design.

Normal

We often assume that we have an idea of what it means to be “normal.” We might expect, for example, a normal college student to be between the ages of 18 and 22; we may believe we can recognize whether or not a person falls into the range of normal height and weight; and we think have an understanding of what type of food is normally served at breakfast and not at dinner. We also generally accept that being normal has positive value, and as a result, it can be difficult to step back from our assumptions and think critically about what our culture values as normal and why.

However, in recent years disability studies scholars in the arts and humanities have begun doing just that: they are following gender and race studies scholars who have turned their attention to whiteness and heterosexual relationships as allegedly unmarked identities. In the same way, disability studies scholars are interested in normalcy as an unmarked, previously unquestioned category.

Rosemarie Garland-Thomson (1996) coined the term normate to describe what is understood as the definitive, generalizable human being—that which is thought to be normal. The power of Garland-Thomson’s term is that only a small minority of real people could be considered normates, because almost all people deviate in some way from whatever their culture deems normal (p. 8). In Robert McRuer’s (2008) scholarship, he lists traits that make up the normate in American culture, including proper dimensions of height and weight, freedom from chronic illness, Euro-American standards of beauty, and heterosexuality, among other things (p. 245). Lennard Davis’s (2006) historical perspective on what it means to be normal adds another dimension to Garland-Thomson’s and McRuer’s work by showing that what defines the normate is different in every culture: “The idea of a norm is less a condition of human nature than it is a feature of a certain kind of society” (p. 3). According to Davis, we learn what is normal in our own culture through many positive representations of normal characters and negative representations of abnormal characters in books, movies, TV shows, and other cultural objects. Davis calls this process of equating normal with positive traits “enforcing normalcy” (p. 12).

While it can be useful to question what is normal, it is not always practical to question the reasons why one thing is understood as normal and another is not. In order for standardized tests, medical diagnoses, and school applications to be useful, an agreed-upon normal range of performance is necessary. On the other hand, disability studies provides a check on how such standardized tests, for example, define their range of normal scores. Disability studies asks questions such as: Who decides what counts as normal and what does not? What are some of the consequences of being labeled abnormal? In a given scenario, how is normal defined? How does normal/abnormal circulate historically and socially in art, literature, and media? Who benefits from thinking in terms of normal and abnormal?

As this last question suggests, disability studies scholars are interested in where the boundary between normal and abnormal is drawn, and further, how firm the boundary is. In the same way that the boundary between a novel and a novella is not always clear, a neat circle could not be made to include everything that counts as normal and exclude everything abnormal. In the same way that Joseph Conrad’s Heart of Darkness is not clearly a novel or a novella, certain bodily behaviors and traits inevitably straddle the boundary line between normal and abnormal. The boundary between normal and abnormal is not fixed, but can be blurred or redrawn. Furthermore, creating a category of “normal” means that everything outside of the category’s boundaries is “abnormal”; if we only focus on the inside of the “normal” circle and what falls within those boundary lines, we ignore whatever does not fit neatly within the circle.

The stakes of ignoring novels and focusing on novellas are relatively low. However, if we substitute novellas with “normal people” and novels with “abnormal people,” the results could be more damaging. For example, if our government and social programs focused only on normal individuals and excluded any individuals deemed abnormal, the stakes would obviously be much higher. In Nazi Germany, those deemed abnormal were not quietly excluded but forcibly sterilized, experimented on, and killed—a testament to the power that cultural understandings of normalcy can have (Davis, 2006, p. 10).

An infamous poster promoting Nazi euthanasia policies shows a man with disabilities seated in a chair with a man in a white lab coat standing behind him. The text reads,

60,000 Reichmark. This is what this person suffering from hereditary defects costs the Community of Germans during his lifetime. Fellow Citizen, that is your money, too. Read A New Peo...

Table of contents

• Cover Page
• The SAGE Reference Series on Disability: Key Issues and Future Directions
• Title
• Copyright
• Contents
• Series Introduction
• Preface
• About the Author
• About the Series Editor
• Chapter 1. Introduction, Background, and History
• Chapter 2. Current Issues, Controversies, and Solutions
• Chapter 3. Chronology of Critical Events
• Chapter 4. Biographies of Key Contributors in the Field
• Chapter 5. Annotated Data, Statistics, Tables, and Graphs
• Chapter 6. Annotated List of Organizations and Associations
• Chapter 7. Selected Print and Electronic Resources
• Glossary of Key Terms
• Index