Disability, Discourse and Technology

Agency and Inclusion in (Inter)action

Najma Al Zidjaly

• Publisher: Palgrave Macmillan
• Year: 2016
• Print ISBN: 9781349558759, 9781137519566
• eBook ISBN: 9781137519573
• Topic: Politics & International Relations
• Subtopic: Linguistics
• Index: Politics & International Relations

Exclusion is the main predicament faced by people with disabilities across contexts and cultures, yet it is one of the least academically studied concepts. This book offers an applied linguistics perspective on critical and timely issues in disability research, filling in a number of gaps in discourse analysis and disability studies.

1

Inclusion in (Inter)action

How and when it all started

On the evening of January 4, 2002, during a one-month pilot study, Yahya, a 46-year-old Omani man with quadriplegia, of whom I am a friend and a caregiver, expressed his wish to take his daily shower. I promptly obliged by interrupting the conversation I was involved in with his sister, Fatima, and called out for his resident assistant from India, requesting that she fetch Yahya’s commode chair. Upon hearing my request, the assistant, who had been caring for Yahya for one year, similarly interrupted the action she was involved in (washing the dishes) and hurried to the main bathroom where Yahya’s commode chair was seated. Yahya’s teenage nephew, Hythum, also offered his help upon entering Yahya’s room. As the assistant placed the commode chair in the right angle at the right side of Yahya’s bed and took her position behind the commode chair, the following series of negotiations between the five of us ensued (these were captured by video-recorder and occurred in Arabic; what follows is the English translation):¹

Hythum:	((addressing Najma)) You want to lift Yahya
	Or you want me to do it
Najma:	I’ll lift now
Fatima:	Come on, Hythum,
You are a man now
Yahya:	I need you later, Hythum
Najma:	You do the car lifting
Fatima:	((addressing Najma)) Yahya is going out later?
Yahya:	[Hey, I’m] here
Najma:	[Ask him]
Hythum:	[Yes]
Fatima:	[Sorry] bro
Najma:	Pull the pad, okay?
	Ready
Hythum:	For GOD’S sake—
Yahya:	Just pull it
Najma:	You pull yourself together first
	((laughter))
Yahya:	<smile voice> Here we go>

((Yahya lifts his arms up. I grab him from his upper arms and pull him toward me. Meanwhile, the assistant puts her hands around Yahya’s chest from behind and Hythum places one hand on the medicated pad in anticipation of pulling it out as soon as the assistant and I lift Yahya up))

Hythum:	<impatiently> Come on PEOPLE>
Najma:	((addressing the assistant)) Okay, ready?
Assistant:	Yes
Najma:	1 2 3
Fatima:	[HE::Y]
Yahya:	[HE::Y]
Hythum:	<while pulling the medicated pad> Mission accomplished
Yahya:	Bravo?
	((the assistant and I place Yahya on his commode chair))
Najma:	Are you okay?
	Or you need to go higher?
Fatima:	[He needs ] to go higher
	((the assistant fiddles with Yahya’s computer))
Yahya:	[I am okay] and
	Nobody touches my computer
	I’m working on a new PowerPoint video
Hythum:	<while shaking his head from side to side>
	You and your videos
	((laughter ensues))
Najma:	Okay, off you go?

This is the interaction in 2002 that started it all. At first, I was intrigued by the chain of actions that led to Yahya’s transfer to his commode chair. This soon turned into philosophical queries concerning the collective and collaborative nature of human agency. Thereafter, those questions generated more specific probes aimed at examining the links between discourse and action on one hand and the notion of inclusion and attempts at exclusion, especially in relation to individuals with quadriplegia, on the other. Twice in this conversation, and in numerous subsequent incidents, Yahya was either not directly addressed or somebody else jumped in to respond on his behalf. In both cases in the above extract, Yahya signals his wish to be addressed and his ability to respond for himself, indicating his requirement to be included. The role that caregivers, especially family, and language play in reinforcing the identity of persons with disabilities as agents shortly proved to be intriguing as well. Subsequently, questions emerged regarding Yahya’s use of technology and the effects it had on constructing his agency through offering him ways to combat exclusion at various levels.

What this book is about

This book is about the agency of people with disabilities. It is also an applied sociolinguistic manual on how to conduct multimodal research that is empirically rigorous, theoretically grounded, socioculturally sensitive and activism-oriented. Through analysis of various types of real-time data collected as part of a longitudinal, ethnographic case study involving one Arab Muslim man with quadriplegia and members of his social circles, the book presents a new framework for the analysis of agency and inclusion as interactive, multimodal and mediated accomplishments. The book argues that opening up the perimeter of analysis to integrate both local and global aspects of talk and actions is the best method for systematically analyzing the lived experience of disability, which indubitably displays itself in the daily verbal and non-verbal arbitrations of inclusion. In presenting this argument, the book draws upon and develops the integrative theory of mediated discourse analysis (Scollon, 2001a) that enables the capturing of the moment-by-moment attempts at inclusion inherent in communication across ability status and across modalities. In particular, it enables the examination of the role that a seemingly dependent person (named Yahya), his caregivers, discourse, art, technology and elements of the broader culture can, and do, play in the discursive reinforcement and diminishment of his identity as an agent. In rendering a comprehensive analysis of the processes of agency and inclusion in (inter)action, the book thus dispels stereotyped beliefs about persons with disabilities (in the Middle East and beyond).

The book provides answers to the following questions:

1. How does a person with a physical disability manage everyday attempts at exclusion and create inclusion through discourse and technology?
2. What is the exact role that discourse and technology can play in exercising agency?
3. What role does the Internet, through programs such as Yahoo chatrooms, play in effecting change in the agentive identities of persons with disabilities?
4. Can micro level discourse and art created by individuals using Microsoft PowerPoint and YouTube lead to macro level social change? Alternatively, can macro level actions (such as changing a law) lead to micro level personal change? In other words, what is the connection between micro and macro levels of discourses and actions?
5. What can a multimodal, qualitative analysis of inclusion in (inter)action and across modalities from the Middle East tell us about disability and inclusion? What does such a study add to the international research on disability? What does it add to linguistic research in general?

Disability, Discourse and Technology’s implications reach far beyond disability studies, discourse analysis, technology studies and the Middle East, however. The multimodal analysis I therein present problematizes the notion of an autonomous agent by illustrating the collective and co-constructed nature of human agency; it questions the stereotypical categorization of persons with disabilities as agentless, dependent bodies; and it calls for blurring the existing distinctions between people (both caregivers and those they care for) and the mediational means they bring into play. The study hence enriches recent academic discourses that call for a more ‘critical’ approach to disability, wherein documenting the lived experience of disability and the agency of persons with disabilities is at the forefront. The book further challenges us to eradicate exclusion, the main quandary of living with a disability, at the source by elucidating how we conceive of disability in our thinking, which readily translates itself into day-to-day interactions, and demonstrates how, if left untreated, these interactions coalesce into social discrimination.

Key analytic ingredients

This study provides the first multimodal, qualitative and descriptive account of the interrelationship between disability, discourse and technology across religious, social and cultural contexts, a relationship that is more often presumed than demonstrated. It is also the first multimodal analysis of how inclusion is managed in interactions between a Muslim Arab man with a disability and his caregivers through narrative and non-narrative discourse, art and computer-mediated communication. Thus, in this section, I synopsize key disability concepts, terminology and research to contextualize the study academically, socially and culturally. This is all the more crucial given that a main objective of this project is to capture the link between micro level actions (such as hypothetical narratives) and macro level actions (creating social change).

Disability studies

This book builds on and contributes to the well-established academic field of disability studies, which emerged in the 1960s and 1970s in Europe and North America in response to traditional conceptualizations of disability.² To avoid positioning disability as a biomedical quandary perpetuated by individuals—and fueled by political motivations during the latter part of the 20^th century—groups of persons with disabilities in Europe, Canada and the United States joined forces with researchers from diverse fields such as sociology and anthropology to demand their lawful rights, inevitably leading to many disability acts throughout the northern hemisphere. Therefore, while academics were influential in shifting the mode in which ‘deviance’ was conceived, the primary challenge to orthodox views came not from the academy but from activists with disability (Barnes et al., 2002; Barnes, 2012). Jointly, they shifted the focus from viewing the ‘disabled body’ as a setback to constructing the disabling society as the group at fault, rendering the cause of disability a social, cultural and a political construct, similar to paths taken in the gay and Black movements (Driedger, 1991; Vehmas, 2008).

As an ever growing interdisciplinary and multi-disciplinary field of study, disability studies has had its fair share of successes and challenges. Undoubtedly, it has highly contributed to international disability policies and to the academic and political discourse on disability, such as in Oman, wherein my research was conducted. Nonetheless, many contentions and ensuing debates remain. I now synopsize three of the chief concerns facing disability studies today. These are the most germane to the arguments put forth in this book, and provide a fundamental backdrop to my case study analysis.

The question of theory

The cornerstone theory upon which disability studies is built is the social model of disability (Thomas, 2007).³ The model, following policies of the Union of the Physically Impaired Against Segregation (UPIAS, 1976), distinguishes between impairment and disability, and centralizes identifying and eradicating all processes of exclusion, including physical, psychological, social and cultural barriers.⁴ Countless critics have mistranslated the model’s distinction between physical and social lack of ability, and the model’s foregrounding of outside barriers, as an unaccountability of impairment as a root of disability (Barnes, 2012). Accordingly, this has resulted in the characterization, by many, of the social model as limited in its capacity to address disability wholly (e.g., Shakespeare and Watson, 1997; Mulvany, 2000; Shakespeare, 2006; Goodley, 2011; Grue, 2011). Calls for a more complex theory that takes into account physical impairment abound (e.g., Hughes and Paterson, 1997; Hedlund, 2000; Seelman, 2003; Anderberg, 2005; Grue, 2011; Watson, 2012). Most interesting—and the most relevant to the findings of this book—are the proponents of theorizing disability more critically (e.g., Davis, 1995, 2013; Kasnitz, 2001; Chouinard, 2009; Goodley, 2010; Mitchell and Snyder, 2012; Shildrick, 2012). According to the critical disability lens, the traditional focus on physical barriers and the corresponding conventional thinking of binary designations (e.g., abled or dis-abled, normal or abnormal) must be deconstructed and transcended, for such misconceptions that paint people with disabilities as ‘different’ are argued to be neither viable nor serving the cause of disability any longer. On the contrary, they reinforce disempowering notions about persons with disabilities and, ultimately, what they can do.

The question of research

Conducting research that ultimately serves to eradicate social ostracizing has been one of the major objectives of disability activism since the inception of disability studies. The main contention presently is the validity of the idea of emancipatory research, which builds upon UPIAS ideals and was petitioned by Oliver (1992), a key founder of the field, in response to antiquated means of conducting research that did not sit well with the agenda of disability studies. Although emancipatory research, commissioned and controlled by persons with disabilities and their organizations (Department of Human Services [DHS], 1992), has forever altered disability policies by focusing on finding and eradicating social barriers (Barnes, 2012), Watson (2010, 2012), a second key figure in disability studies, rightly contends that it has failed to in reality emancipate people with disabilities. He explicates that by focusing on mental and physical disabling barriers in society, the concept of personal agency among people with disabilities to overcome and eliminate them is ignored. Moreover, past emancipatory research has neglected to address the eradication of barriers close to home that dominate the everyday lives of persons with disabilities (Watson, 2002). Thus, it is widely argued that it is time for disability studies to move away from emancipatory research and embark upon what Watson (2012) terms a critical realist agenda that explores individual experiences and foregrounds ablism instead of disablism. The new critical research agenda, hence, encourages a bottom-up rather than a top-down research agenda, whereby findings are generated from personal experience, not from theories.

The question of culture

Disability is a global concern that is culturally relative (Ingstad and Whyte, 1995, 2007). Accordingly, the United Nations’ (UN) mission has focused on scaling global concerns to local contexts since the creation of the Convention on the Rights of Persons with Disabilities in 2006.⁵ Notwithstanding international efforts,...

Table of contents

• Cover
• Title
• Copyright
• Contents
• List of Figures and Tables
• Preface
• Acknowledgments
• Transcription Conventions
• 1 Inclusion in (Inter)action
• 2 Methodology and Research Background
• 3 Inclusion through Microsoft PowerPoint
• 4 Inclusion through Hypothetical Narratives
• 5 Inclusion through Discourse
• 6 Inclusion through Yahoo Chatrooms
• 7 Disability and Agency Redefined
• Notes
• References
• Index