Social Research and Disability

Developing Inclusive Research Spaces for Disabled Researchers

Ciaran Burke, Bronagh Byrne, Ciaran Burke, Bronagh Byrne

• Publisher: Routledge
• Year: 2020
• Print ISBN:
  9781138387652
• eBook ISBN:
  9780429760020
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

Social Research and Disability argues that the contemporary rules of sociological methods outlined in numerous research methods texts make a number of assumptions concerning the researcher including ambulance, sight, hearing and speech. In short, the disabled researcher is not considered when outlining the requirements of particular methods. Drawing upon these considerations, the volume emphasizes how disabled researchers negotiate the empirical process, in light of disability, whilst retaining the scientific rigour of the method. It also considers the negative consequences arising from disabled researchers' attempts at "passing" and the benefits that can emerge from a reflexive approach to method.

This innovative and original text will, for the first time, bring together research-active academics, who identify as being disabled, to consider experiences of being disabled within a largely ableist academy, as well as strategies employed and issues faced when conducting empirical research. The driving force of this volume is to provide the blueprints for bringing how we conduct social research to the same standards and vision as how the social world is understood: multi-faceted and intersectional. To this end, this edited collection advocates for a sociological future that values the presence of disabled researchers and normalises research methods that are inclusive and accessible.

The interdisciplinary focus of Social Research and Disability offers a uniquely broad primary market. This volume will be of interest not only to the student market, but also to established academics within the social sciences.

Part 1

Navigating the academy

Chapter 1

Owning my room

Building a safe, accessible and productive space for student researchers with complex communication disabilities

Annmaree Watharow

Introduction

DeafBlind people can do anything. The question is not whether or not we can or should do something, but how we are going to do it—John Lee Clark, Where I Stand 2014.

(Kindle version, Handtype Press, location no: 1698 of 2094)

This chapter seeks to explore how to make a research degree possible for a student with dual sensory impairment, examining what reasonable adjustments can be made and also how many of them might be needed. In short, it aims to provide a practical resource for students (and their potential supervisors), whilst acknowledging that the heterogeneity of interests, abilities, residual hearing and vision, and life course of each student is different. Attitudinal change is needed. The questions what accommodations are reasonable and how much is it going to cost? ought to be recast as what does this student need for success?

There are negligible narrative accounts available to people with deafblindness enrolling as doctoral students; there are also hardly any resources, including research, for deafblind scholars. The following reflections, from my experience as a student postgraduate researcher at the University of Technology, Sydney (UTS)—and from a decade of study in total in Australian tertiary institutions before that—provide one foundation layer (of many to come, I hope) in enabling deafblind students to succeed. In this chapter, as well as reflecting on personal experience, I distil the scant literature on students with deafblindness/dual sensory impairments/disabilities for insight. The subtext is: I can do this and so can you—but it will be difficult, because the steps to learning and knowledge production are steep and uneven—as detailed in Figure 1.1. I remind readers that I am in the middle of this process and not yet in a position to survey with hindsight how I arrived here, what forces were at play and what the significance of my research into the communication, access and mobility experiences of deafblind patients is.

A tertiary institution, like the society it is a part of, is slow to provide what the disabled need for success in a natural, forthcoming manner. My years at several universities in Australia have been one of favour (you are lucky we are doing this), invisibility (we have no services for people like you), unwanted visibility (whoever shouts loudest often gets more), privilege (I am white, literate and loud), and omnipresent aggressions, assumptions and discrimination. These aggressions, assumptions and discrimination weaken both institutions and individuals. Disabled students are required to rise above it all, be resilient and toughen up—to work harder for longer for less. If we succeed, we are regarded as amazing: role models, inspo porn for the able (well, if they without legs/arms/hearing/sight etc. can do it, why can’t you?). And if we fail, that is to be expected. Low expectations abound for people with disabilities in general and for people with deafblindness in particular.

In addition, there are implications of unfair benefits—after accommodations granted following a doctor’s visit to certify disabilities (we wouldn’t want there to be any fraudulent claims for accessibility provisions) and the granting of what is deemed reasonable—many students and academics persist in believing that these confer unfair advantage to the disabled student. The concept of reasonable adjustments is a legal, moral and educational ambiguity that can fuel disputes over the cost, the need, the method, the provision and the legitimacy of accommodations. If access to learning and research were indeed equitable, institutions would simply provide everything that was needed for success quickly, without judgement, as directed by the expert in their disabilities, the student herself. But our universities (and society) have yet to become truly inclusive and welcoming. This makes climbing the steep steps to learning and knowledge production fraught and challenging.

Tertiary institutions are obliged by legal and moral frameworks in Australia—specifically, the Anti-Discrimination Act (1977) and Australian Disability Services Act (1986), as well as by international law, specifically, the United Nations Convention on the Rights of People with Disabilities (2008) to provide equitable and supported education to students with disabilities. Dr Sev Ozdowski, the Disability Discrimination Commissioner of the Australian Human Rights Commission (2000–2005) affirms that equitable access to communication is a fundamental human right, ratified by the Universal Declaration of Human Rights (1948) and other legally binding treaties such as the International Covenant on Civil and Political Rights (1966), all formally confirmed by Australia. He states:

These are rights which the Australian government has agreed to respect and ensure for all people within Australia. That means all people, not just people who do not have a disability affecting communication … Equitable access to communication is essential if deafblind people are to have any prospect of equality of opportunity and access in education, employment, access to citizenship rights including voting, access to services such as health care or transport; and other areas of social and economic participation … It is one thing to declare human rights in theory. It is another to achieve them in practice … The Disability Discrimination Act [Commonwealth, 1992] … is one tool for working towards equality for people with disabilities. It makes discrimination unlawful in employment; education; provision of goods and services among other areas.

(Ozdowski 2002)

This chapter operates on a social relational understanding of disability; that is, that we are disabled by our bodies and society (Shakespeare 2014). Unfortunately, ableism in academia creates barriers and difficulties in learning spaces for students with disabilities (Dolmage 2017). Furthermore, students with disability do not benefit from policies that prescribe for them as a homogenous group. Nor do students flourish when there are gaps between policies and practice that impact adversely on the provision of supports to students (Mutanga 2017).

The enormous heterogeneity of disability means that a co-creation approach to individuals with diverse learning and support needs is vital to the success of pathfinder students. Students with disabilities themselves possess vast and detailed knowledge of their conditions and needs; they are expert-knowers (Barnes & Mercer 1997). Social relational methodology accepts that no model suffices to explicate every disability experience in every person in every culture so, while my focus is on personal experience, this chapter is designed to be read and used as needed by deafblind students and other readers. My experience is that of an Australian postgraduate student with deafblindness in the late teens of this century.

Many terms are used to describe people with dual sensory impairment, but for the purposes of this chapter, I have chosen to use deafblindness to encompass both deafblindness and dual sensory impairment/losses to discuss all students with combined impairments of vision and hearing. At times, I have also used these terms interchangeably; so, this chapter will provide an overview of the term deafblindness using the 2016 Nordic definition as a lynchpin. While this first part of the chapter provides information on deafblindness globally and within an Australian context, it also briefly mentions Usher syndrome and discusses the presence of residual vision and/or hearing among deafblind individuals.

I then outline my subject position as a deafblind PhD student to indicate how my unique requirements, background and education shape my research question, methodologies and practices. I also provide critical information and gaps in relation to studying as a deafblind researcher. This profile includes documenting personal and research data on the steps to learning, knowledge and research production. There are ten steps detailed in Figure 1.1, which are then elaborated on, including: (1) Preparation limbo, (2) Safe conduct, (3) Access and communication, (4) Digital spaces, (5) Pedagogy and supervisors, (6) Unsafe spaces, (7) Knowledge building about disability, (8) Methodological anxieties and tensions, (9) Vicissitudes of life, and (10) Time—this last step is a significant obstacle in my work. The section of Access and Communication includes a table (Table 1.1) that outlines specific Access and Communication Problems/Barriers and their solutions. The section on time includes a table (Table 1.2) that compares the time I take to complete “writing a journal article activities” against the time estimated for a majority of researchers. The intention of sharing this detailed account of my experiences at one institution is to provide a resource that I hope will prove useful to others.

Deafblindness: an overview

Deafblindness research is a nascent field. There are data gaps, invisible sub-populations, and diverse definitions and terminologies to contend with (Wittich et al. 2013; Dammeyer 2014; Larsen and Damen 2014; Simcock 2017; Jaiswal et al. 2018). For the purposes of this work, the Nordic definition and a summary of explanatory comments will be the underpinning definition:

Deafblindness is a distinct disability. Deafblindness is a combined vision and hearing disability. It limits activities of a person and restricts full participation in society to such a degree that society is required to facilitate specific services, environmental alterations and/or technology.¹

(Nordic Centre for Welfare and Social Issues 2016)

This 2016 Nordic definition addresses many of the intricacies of life with dual sensory impairments. In brief, the key complexities, drawn from the explanatory comments, are as follows:

1. Distinct and complex disability
2. Hard for each sense to compensate for the other
3. Time-consuming
4. Energy draining
5. Information is received in fragments.
6. Activities are limited.
7. Participation is reduced.
8. Communication, access to information and mobility are affected.
9. Tactile sense is critical as a conduit of information.
10. Communication technology, assistive devices, interpreters and adaptions to the environment may be required.
11. Despite the above, human assistance and support is necessary to provide access to information, mobility and safety.
12. Society is responsible for support and barrier removal.

Research is difficult in this population because of (a) rarity/low prevalence, (b) geographical spread, (c) heterogeneity of the population and (d) vast permutation of communication methods (Luckner, Bruce & Ferrell 2016).

The World Federation of the Deafblind (WFDB) Report is a collaboration that seeks to gather data and estimate the global prevalence of deafblindness. Covering 97 million people across 22 nations (a mix of high-, middle- and low-income countries), it was completed in 2018. Significant findings from the report include

• Of the world’s population, 0.2–2% live with deafblindness (where deafblindness is used as an umbrella term for all dual sensory impairment) (p. 10).
• The majority of people with deafblindness are over 65 years, so the number of persons with deafblindness increases with age (p. 16).
• Deafblindness often coexists with other disabilities: “Between 20% and 75% of persons with deafblindness” have additional disabilities (p. 33).

Australian data is difficult to ascertain. In 2013, it was estimated that 100,000 Australians lived with deafblindness/dual sensory impairment. Of these, 13,700 were under the age of 60 living with significant disability from the combination of vision and hearing loss (Dyke 2013, p. 1). Deafblindness occurring before the age of 65 is uncommon (Schneider, Gopinath & McMahon 2012; Dammeyer 2014). Usher syndrome accounts for half of all these cases (Wittich et al. 2012) with an incidence of 4–10 per 100,000.

Usher syndrome is both congenital and acquired. In brief, Usher syndrome is an autosomal recessive inherited condition that can impact three major senses in the body: vision (progressive vision loss over time), hearing (loss varying in severity, usually present at birth and may decline), and balance (present in some subtypes of Usher syndrome, but not a universal feature). Sixteen loci have been identified that are either causative or modifier genes (Mathur & Yang 2015). This is what I have.

Few with deafblindness have no sight and no hearing at all; most have limited residual vision and/or residual hearing. Measures to maximise and support these residuals are usually needed for university and research success. The deafblind are, therefore, a small population with high communication, access and mobility support needs.

The research: identifying critical information and gaps

As stated in the introduction, there is a dearth of scholarly work on deafblindness generally (Dammeyer 2014; Larsen & Damen 2014) and on both university and postgraduate experiences specifically (Arndt 2010; Chanock, Stevens & Freeman 2010, 2011; Wolsey 2017).

In the absence of data on deafblind PhD students, I located five papers related to undergraduate student experiences (Arndt 2011; Chanock 2010; Chanock, Stevens & Freeman 2010, 2011; Wolsey 2017). These papers found that strong academic and learning support led to success, while Arndt (2...

Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• List of figures
• List of tables
• Acknowledgments
• Notes on contributors
• Introduction
• Part 1 Navigating the academy
• Part 2 Conducting research ‘in the field’
• Part 3 Shifting methodologies
• Editorial reflections
• Index