New Narratives of Disability

Constructions, Clashes, and Controversies

Sara E. Green, Donileen R. Loseke, Sara E. Green, Donileen R. Loseke

• Publisher: Emerald Publishing Limited
• Year: 2019
• ISBN:
  9781839091452
• Topic: Ciencias sociales
• Subtopic: Sociología

This volume explores questions about narrative frameworks in disability research. Narrative is a omnipresent meaning-producing communication form in social life that is both cultural and personal.
Public understandings of disability tend to follow a medical storyline in which disability is a personal tragedy to be treated through professional intervention - a frame that disempowers and fails to resonate with many disabled people. Scholars in disability studies and the social sciences have proposed an alternative that portrays social structures, forces, and attitudes as the problems to be resolved - a frame that, while empowering, may neglect, or even repress, some kinds of personal disability stories.
This volume seeks to answer the call for richer, more diverse understandings of disability. We explore how narrative inquiry can broaden perspectives on disability to include pain, suffering, chronic illness, and episodic disability, as well as the perspectives of family members and caregivers, while also serving as a platform for dismantling prejudice and discrimination in order to promote positive social change.

PART I
CULTURAL STORIES OF DISABILITY AND INDIVIDUAL LIVES

CHAPTER 1

REFRAMING THE STORY OF HELEN KELLER AND ANNE SULLIVAN: RESISTING (DIS)ABILITY STEREOTYPES THROUGH AN ANALYSIS OF CHILDREN’S LITERATURE

Cheryl Najarian Souza

ABSTRACT

Purpose

This chapter investigates how we have come to know what we know, in the United States, about the terms “ability” and “disability” through the story of Helen Keller and her teacher Anne Sullivan Macy. What is the narrative of Helen Keller as told through children’s literature? How might the ways in which her life is presented contribute to stereotypes of what it means to be disabled? What, if any, are the ways in which authors of these books resist writing about her as someone who “overcame” her disabilities? How is Helen Keller’s relationship with her teacher, Anne Sullivan, portrayed and what might this representation contribute to the concepts of dependence and interdependence?

Method/Approach

This project provides a sociological analysis of common themes through a content analysis of 20 children’s books on Helen Keller.

Findings

The theme of the widely circulating “story of the water pump moment” (when Keller realizes that hand movements signify language) depicts a one-sided relationship of Helen Keller and her teacher Anne Sullivan Macy. This informs the narrative representations of Anne Sullivan Macy as “miracle worker” and Helen Keller as “miracle child.” Another theme is the “complexities of resistance,” which shows how these narratives uphold the stereotype that Helen Keller needed to “overcome” her disabilities while also resisting this notion and showing how she also helped Anne Sullivan Macy.

Implication/Value

This demonstrates how widely circulating stories such as those about Helen Keller shape what we know about what it means to be abled or disabled, challenges simplistic binary understandings of the disability experience, and points to the power of narratives to shape systems of beliefs.

Keywords: Disability; ability; gender; narratives; interdependence; deaf

INTRODUCTION

In this chapter, I look at how, in the United States, we have come to know what we know about the terms “ability” and “disability” through the story of not only Helen Keller but also of her teacher Anne Sullivan Macy. In an effort to look at the subjugation and stereotypes of people with disabilities, this project addresses several important research questions: What is the common narrative of Helen Keller as told through children’s literature? How might the ways in which her life is presented contribute to the stereotypes of what it means to be disabled and abled in America? What, if any, are the ways in which authors of these books resist writing about her as someone who is disabled and who needed to “overcome” her disabilities? How is Helen Keller’s relationship with her teacher, Anne Sullivan, portrayed and what might this representation contribute to the concepts of independence and interdependence?

This chapter contributes to this volume, which looks at narratives of disability and how it relates to cultural notions of what it means to be normal. It adds to knowledge in the fields of sociology, disability studies, and gender studies by looking at the concepts of ability and (dis)ability through the historical icon of Helen Keller along with her teacher Anne Sullivan. By providing an analysis of how we have come to know what we know about what it means to be abled or disabled, the author challenges this binary system and seeks to add to the growing body of scholarship on the concepts of narrative, independence, and interdependence. This research contributes to the efforts of scholars and activists who are fighting for social justice and seeks a world that challenges history and how we have arrived at constructions of normalcy in the twenty-first century.

Deaf, Deaf–Blind, and Identities

I have written about the Deaf community, particularly highlighting the experiences of college-educated Deaf women in their paid work and mothering experiences and analyzing the spaces where they face oppression and where they seek to resist the stereotypes imposed upon them (Najarian, 2008, 2006a, 2006b; Najarian Souza, 2010a, 2010b). As part of this project, I investigate what the narratives have been on perhaps the most famous deaf and blind woman of all in our time – Helen Keller. My hope is that by gaining an understanding of where these discourses come from and tracing how they might evolve over time, we will be able to change stereotypes that oppress those who are labeled “disabled” and also rethink the concept of what it means to be “abled.”

According to the Deaf scholars in the United States, the lowercase deaf describes the audiological condition of the not hearing, whereas the uppercase Deaf refers to a group of deaf people who share a common language, American Sign Language (ASL), culture, and history (Padden & Humphries, 1988). Instead of viewing themselves as disabled, the Deaf community defines being Deaf as cultural and part of a linguistic minority whose primary language is ASL (Lane, 1999). People who are deaf are often, although not always, older Americans who lose their hearing and become deaf later in life and do not consider themselves part of the Deaf community. Hard of hearing individuals, as another group, sometimes identify with the Deaf community, but not in all cases.

Deaf studies scholars often contest the distinction between the terms deaf and Deaf. In their study of deaf and hard of hearing youth and welfare policy of the disabled, Haualand, Gronningsaeter, and Hansen (2003) discuss how it becomes problematic to place individuals into such categories because of the risk of reducing people’s complex identities to one particular status. Instead of using either deaf or Deaf, they adopt a “minority approach” and a “disability approach.” Breivik (2005), in his study of Norwegian Deaf people, adopts a similar perspective and provides an analysis of how individuals navigate being deaf/Deaf. These literatures suggest that issues of identity have something to do with the languages of each country and that they are not solely an American and ASL issue. In line with these scholars, I take the position that the labels deaf, Deaf, and hearing and the privileges and stigmas attached to them are socially constructed and mediated through the various contexts which people find themselves in their daily lives.

Recent disability studies scholars have begun to focus on narrative analysis as a way of understanding people with disabilities and their stories. Stoffel (2012), as a deaf–blind individual himself, chronicles the experiences of 12 deaf–blind people to illustrate a more complete view of the challenges it entails to have this lived experience. These narratives are important because they show another dimension to the experience of being disabled and are not the typical narrative of a success story. Instead, it prompts us to contemplate the question: how do we define success? Is it something that is based on individualism and being independent or one that shows the need for an interdependence of those who are labeled disabled and those who are considered able-bodied? Mauldin (2016), in looking at the experiences of mothers who navigate the experience of getting a cochlear implant for their deaf child, analyzes how the culture of what is normal affects the concept of having a disability such as deafness. We could think of Mauldin’s work as also challenging the grand narrative that success is based on individual or independent experiences and perhaps one that is based on interdependence.

Narratives, (Dis)ability, and Interdependence

What does it mean, though, to look at narratives through the lenses of a social scientist and disability studies scholar? How is using this perspective important for those interested in changing these narratives in the fight for social justice? Loseke (2019) has written about the importance of stories and the power of storytelling for those in the field of the social sciences. Stories, she argues, produce meaning and because of this it is critical to understand that the importance of narrative meaning making requires us to see that “meaning is cognitive and emotional and moral” (p. 2). She argues that there are four themes in the study of narrative productions of meaning, which include that narratives are social in their contexts, meanings, evaluations, and consequences, that narrative meaning is cognitive, emotional, and moral, that narrative meaning has cultural, interactional, and personal dimensions, and that narrative or stories are a tool of power (Loseke, 2019). As a sociologist and disability studies scholar, what is of interest to me is Loseke’s consideration of how narratives, as she states, and their meanings are about culture and interactions (p. 13). How we know what we know is created by individuals in the social world and then reinforced by the process of interaction between individuals in a social setting or institution. For example, how children learn the narrative of disability stereotypes rests in part on books that they read about people with disabilities. Helen Keller is a household name in elementary schools when teaching students about what it means to be disabled (or not). The individual ideas that teachers and parents have about these concepts are read to the students who then, by the process of interacting with their teachers, families, and peers, further reinforce the ideas in this narrative.

Reindal (1999) calls for a redefining of the term “independence” and states that instead, scholars should use the term “interdependence” to more fully capture the human condition and experience of those with disabilities in relation to those that are defined as able-bodied. In this chapter, I utilize and expand on Loseke’s (2019) ideas about narrative as well as Reindal’s (1999) call for action to redefine these terms through the story of Helen Keller and Anne Sullivan Macy. I will argue that the narrative in the context of these children’s books is actually a one-sided story which tells readers that Anne Sullivan Macy teaches Helen Keller how to overcome her disability and function as a “normal” in the greater American society. The story that has been told is one that preaches independence, renders the concept and experiences of interdependence invisible, and also presumes that those that are interdependent are not successful or normal. It is time this story is both challenged and retold, especially to young children who learn stereotypes from it.

The social construction of the concept of disability has long been written about in the field of disability studies. Several people have argued that the concept of disability is another aspect of oppression, and that it is linked to the issues of representation in various discourses such as the medical, educational, and legal discourses (Bogdan, 1988; Bogdan & Biklen, 1977; Bogdan & Taylor, 1994; Linton, 1998). Linton (1998, p. 118) has argued for a “claiming” of the term disability and stated that we need to put disability studies at the “center” of our analyses because it adds, as she states:

a critical dimension to thinking about issues such as autonomy, competence, wholeness, independence/dependence, health, physical appearance, aesthetics community, and notions of progress and perfection – issues that pervade every aspect of the civic and pedagogic culture.

This is also an area where scholars often diverge with disability rights activists and those who are proud of their “disabled” identity. Scholars who consider the Deaf community as a linguistic minority are important aspects of this literature and what the Deaf community sees as the claiming of their identity as a civil rights issue (Padden & Humphries, 1988; Shapiro, 1996). Some scholars argue that a constructionist view risks missing important connections between disability, bodily pain, suffering, and materiality (Thomson, 1997; Wendell, 1996). These theorists, do not, however, contest that the stigma of being disabled is a narrative that should be challenged.

However one thinks about disability, what can be gleaned from these theoretical perspectives is that the definitions of ability and disability are a type of narrative or story that is told, in part, and emphasized by a variety of social institutions such as schools, families, and the media. These perspectives also think of success in a particular way – how it is linked to being independent or not. The story of Helen Keller is one such story. It greatly informs and encapsulates how we as Americans have come to define those who are disabled and those who are deemed abled bodied or normal. People with disabilities are often stereotyped by these cultural scripts as those that are in need of rescue, ones that should be pitied, as passive, and in need of a cure. The “normal” or able-bodied individuals seek to rescue those with disabilities who are seen as in need and to “cure” them from their ailments or individual deficits. This has resulted in a great injustice in the way Americans have come to think of the relationship between these two groups and also perpetuated the idea that the binary exists in the first place. In fact, the concept of interdependence is worth pursuing because it shows the more complex and real relationship between those that are arbitrarily seen as disabled and abled.

The story of Helen Keller and Anne Sullivan Macy, I will argue, embodies these stereotypes and is as much a narrative of what it means to be normal (or not) as it is to be seen as American. The concept that people with disabilities depend on those who are able-bodied is perhaps one of the greatest fallacies of this American story. In fact, as the social constructionists argue, the identities of those with disabilities and those who are able-bodied are more fluid than originally thought. They also depend on one another to exist. For the purposes of this article, I will show how the story of Helen Keller has further falsely reinforced the one-sided relationship of the disabled and abled. Instead of thinking of those with disabilities as dependent on those who are not, I would argue for a new narrative of interdependence that highlights the complex relationship between these groups, among them, and the spaces in between. A new narrative desperately needs to be told of these constructs in order to eradicate the damaging stereotypes that exist o...