Disability and Disaster

Explorations and Exchanges

I. Kelman, L. Stough, I. Kelman, L. Stough

• Publisher: Palgrave Macmillan
• Year: 2015
• Print ISBN: 9781349695164, 9781137485991
• eBook ISBN: 9781137486004
• Topic: Social Sciences
• Subtopic: Civil Rights in Law
• Index: Social Sciences

Disability and Disaster adds disaster research to the expanding area of disability studies. The book includes writings by international scholars and first-hand narratives from individuals with disabilities affected by disasters around the globe. Hazards described in these narratives include earthquakes, hurricanes, floods, fires, and war.

Part I

Background

Chapter One

(Dis)ability and (Dis)aster

Ilan Kelman and Laura M. Stough

Why This Book?

Traditional infrastructure, day-to-day life, and emergency procedures are designed for people without disabilities. It is assumed that human bodies have four functioning limbs; five functioning senses; and the cognitive ability to observe, interpret, and respond to the world in a normative fashion. However, an estimated 20 percent of the world’s population experiences physical, sensory, cognitive, or mental health issues (World Health Organization, 2011) not typically considered or accommodated in our societal and built environment. Society assumes normed functioning and often disregards those who walk, talk, or think atypically. Unfortunately, such marginalization often leads to calamitous experiences during disasters—experiences that are rarely recorded.

This book presents firsthand narratives, written by individuals with disabilities from around the globe, about disasters and disaster risk reduction. These narratives range from surviving an earthquake in urban Costa Rica to surviving the “everyday disaster” of walking down a street in Ireland. Some of these authors acquired a disability as a result of disaster- as did a one writer who lost her leg in a nightclub fire in Brazil. Some recount how acquiring a disability increased their awareness of disaster preparedness and made them agents of change—as did a researcher in Kansas. Some of these individuals did not survive—such as in the case of a woman in a wheelchair who drowned while Hurricane Katrina’s waters rose around her. A number of these narratives come from professionals within the field of emergency management or international development, while others are disability advocates or researchers. From a tsunami in the Cook Islands to fire alarms in Norwegian hotels, these authors exchange disaster-related challenges, sometimes unusual and sometimes day-to-day, in their own voices.

A second purpose of this book is to provide thoughtful academic explorations of why and how hazards affect people with disabilities. Academics from two different continents and two different research traditions contribute perspectives on the wider sociological, environmental, and policy factors that place some individuals disproportionately at risk during disasters. Their chapters provide broad backdrops against which to situate the individual disability-authored narratives.

Brenda D. Phillips’s chapter uses three frameworks to explore the intersection of disasters and disabilities. First, an overview of emergency management practices is reviewed across the disaster phases of preparedness, response, recovery, and mitigation, which have historically placed people with disabilities at risk. Phillips employs an ecosystem framework, allowing for analysis at different societal levels, to explain how people with disabilities are placed differentially at risk. Finally, Phillips uses a functional-needs framework, in which support needs, rather than disability diagnoses, are used for planning and providing disaster response.

In a second academic chapter, David Alexander argues that a fundamental reorientation is necessary for including people with disabilities in emergency plans, as civil protection systems have been historically designed for the mainstream population. He discusses how disasters, wars, and the hazards that accompany them, including bombs and landmines, also lead to disability. Finally, Alexander discusses how legal instruments and rights, most notably the international Sphere standards developed in 2011, have affected emergency procedures that provide support to people with disabilities. He cautions that an “adoption gap” separates what researchers and policy-makers have concluded is best practice from the actual adoption of these practices by international organizations.

Finally, we, the editors, explore a third perspective, one that presents a critical examination of the intersection of disability and disaster. A common assumption is that the occurrence of disability and the occurrence of a disaster are both negative, in that they both are undesirable and deleteriously affect human life. Indeed, as part of their semantic construction, the term disability and the term disaster share the prefix dis-, connoting negation or lack; apart, asunder, or away; or having “a privative, negative, or reversing force” (Dictionary.com, 2014). At this level of analysis, the word (dis)ability can be perceived as inherently offensive, as it indicates a lack of or absence of ability. An analysis of the word (dis)aster similarly reveals that it comes from the pejorative root dis- joined with the Latin root astrum, together meaning bad star—connoting bad luck or the result of a misalignment of the astral heavens.

Many, including us and the authors in this book, have come to question these conceptions, both separately and together. Is it truly the case that disability means a limitation of ability? Is it truly the case that hazards must cause disasters? The chapters in this book seem to tell a counter-narrative; while disasters can and do negatively affect people with disabilities, people do not passively wait for a disaster to happen and then passively wait to be helped afterwards. Instead, people with disabilities respond actively to these “bad stars.” Further, these authors, both in their individual narratives and in their scholarly reflections, suggest that disasters are not random, unexpected events (see also Hewitt, 1983; Lewis, 1999; Wisner et al., 2004). Disasters are actively designed by societies that fail to include the needs of all people. We further explore this counter-narrative by examining the separate constructions of (dis)ability and (dis)aster, and then these constructs at their intersection.

(Dis)ability: A Social Construction

For decades, the conceptualization of disability has been an ongoing and central discussion among disability scholars (e.g., Oliver, 1986; Shakespeare, 1998; Smart, 2009). Most recently, the social approach to disability has held sway. In this view, disability is seen as resulting from the interplay between external social factors and individual abilities and characteristics. This conceptualization departs from the biomedical stance in which disability is conceived of as an impairment or infirmity solely located within the individual. The biomedical conceptualization is clearly evidenced when an individual is diagnosed and assigned a disability label. For instance, a woman who receives a head injury and subsequently experiences memory loss might be given the label of “traumatic brain injury.” Following this diagnosis, and based on that label, she is then prescribed certain medical, rehabilitative, and psychosocial treatments. In contrast, the social approach to disability focuses on the resources and services that an individual requires, and the ways in which the environment needs to be modified so that people can be as independent as possible in day-to-day living. In our example of the woman with a head injury, the social approach to disability would focus on the daily living supports that the woman needed, such as supported employment or transportation alternates, thereby allowing her to live as independently as she desired.

Some authors (e.g., Abberley, 1987; Devlin and Pothier, 2006; Oliver, 1986) scrutinize how individuals with disabilities have been politically and economically marginalized throughout history. These Critical Disability theorists challenge traditional paradigms, such as the biomedical model, on the basis of power relations, injustice, and inequality. Many disability activists and theorists hold that disability is completely a social construction, in that without these society-created barriers, differences in abilities would be equalized (e.g., Devlin and Pothier, 2006; Oliver, 1986, 1996). Others argue that conceptualizing disability as completely social in nature overlooks or minimizes the corporeal experiences and physical sensations of people with disabilities (see Anastasiou and Kauffman, 2013; Hughes and Paterson, 2006).

To conceptualize how the social-environmental milieu affects people with disabilities, disability theorists employ constructs such as equity, inclusion, accessibility, stigma, segregation, or accommodation. For example, the construct of equity encompasses equity of service, in which people should be entitled to receive the same levels of service and equity of access, in which all people should be entitled to equal access to those services. Two examples illustrate these parallel concepts from the experiences of individuals with visual impairments. In July 2013, Canada’s government mass distributed by mail a flyer advertising job creation for Canadians. The flyer contained words in braille, ostensibly so that people with visual impairments could also understand the content. However, the braille lettering was completely flat, without the raised dots that permit people’s fingers to feel and hence read braille. In this case, the same flyer was sent to all, providing equity of service, but not all could read the information, thus preventing equity of access for people with visual impairments. A flip side occurs in US classes where children are learning to read braille. Teachers often translate reading materials from print to braille but, unless the teacher has a high level of braille expertise, these translated materials frequently contain spelling errors, grammatical mistakes, or are even unreadable. As a result, these students have equity of access to reading materials, but are not provided equity of service. In both of these examples, more thoughtful action would have prevented inequities.

Disasters, and the circumstances that surround them, similarly occasion difficulties in equity of access and equity of services. Individuals who are hearing impaired and who cannot understand announcements made over a loudspeaker in a shelter experience inequity of access. If poorly translated signed interpretation of those same announcements are provided, they do not receive the same information—an inequity of service results. Appropriate inclusion of people with disabilities in emergency response and recovery efforts involves not only what is provided, but also how it is provided. It is not sufficient to provide food and shelter that only addresses the needs of the majority. Everyone who is affected by disaster should have the right to receive services that are accessible, inclusive, and equitable.

In addition, people with disabilities are not simply overlooked or ignored; often they are seen as a burden on society, a problem to be solved by others, or a special case to be “treated.” Too often general measures are taken so that a box can ticked that “the disabled” are now “taken care of.” In addition, little is known about how a specific hazard might differentially affect people with disabilities (Stough and Mayhorn, 2013), which results in emergency measures that are vague and unfocused. Many of these measures also tend to be visible and concrete, such as creating registries of people (which might or might not be used) or changing infrastructure to adapt to needs (without always considering that such needs also change and that infrastructure requires maintenance). Furthermore, people with disabilities are often considered a single homogenized group- “people with disabilities”- despite the incredible diversity represented within the group. Finally, rarely is it acknowledged that people with disabilities and their social networks can best explain what they require to be appropriately included in disaster risk reduction and response.

(Dis)aster: A Social Construction

In the disaster research literature, the social vulnerability approach is increasingly used to conceptualize how disasters disproportionately and negatively affect different groups of people (e.g., Morrow, 1999; Hewitt, 1983, 1997; Lewis, 1999; Wisner et al., 2004). Wisner et al. (2004) suggest that disaster researchers need to move away from a focus on “vulnerable persons” and refocus on “vulnerable situations” within which some people are placed at increased risk more than others (see also Hewitt, 1983; Lewis, 1999). The social vulnerability approach posits that societal practices, including economic, political, and cultural factors, place people at risk. It is these practices that increase vulnerability and create disasters, not hazards such as tornadoes and earthquakes. In this view, it is human society, rather than nature, that deems who is more likely to die or be injured by hazards, as well as who will have fewer resources to deal with these same hazards (Hewitt, 1997).

While hazards occur indiscriminately within space and time boundaries, the effects of disaster are not equal. Disasters particularly disadvantage poor people who live on unstable slopes and cannot afford to move; children who are dependent upon their parents for evacuation assistance; those who cannot understand the language in which warnings and announcements are made; caregivers (most frequently women) for elderly parents and children; and (most frequently) men expected to play rescuer roles and place themselves in danger. Edwards (2000) stated, “Disasters may not discriminate, but they do expose and underscore the inequalities that already exist in the communities they impact.” In this view, vulnerabilities pre-exist in society as chronic, ongoing conditions (Lewis, 1999) and are only unmasked by hazard, thus making vulnerabilities visible as the disaster emerges. As an example, those living in substandard housing suffer more property damage and then have fewer resources for post-disaster repair (Van Willigen et al., 2002). Such differential impact also manifests during recovery. For instance, those without personal transportation (which also would have enabled self-evacuation before a storm) are differentially disadvantaged post-disaster when they cannot travel to obtain recovery services or resources. Social vulnerability theory thus explains how diverse groups differentially experience hazards.

Merging Voices on Disability and Disaster

The intersection of the two fields of disability and of disaster in this book stems from a collaboration between two editors, together with a collaboration among researchers and non-researchers, both with and without disabilities, some who are already authors and some who are first-time authors. As such, this book is not simply about people with disabilities, but written by and with people with disabilities.

As editors, we sought to go beyond “giving voice” to people with disabilities and invited them to “take voice” through authorship. Doing so meant that some of these chapters were spoken and transcribed, some translated, and some co-authored, but always under the direction and approval of individuals with disabilities. We believe such collaborations help mitigate criticisms of disability researchers who reinforce power differentials when they present disability as “personal tragedy” (Barnes and Mercer, 1997) despite the admonishment of “Nothing about us without us” by disability advocates (Charlton, 2000). Families of people with disabilities, too, negotiate disability and disaster, so we included their narratives, particularly when they could give voice to relatives with barriers to writing thei...

Table of contents

• Cover
• Title
• Part I   Background
• Part II   Narratives
• Part III   Conclusions
• List of Contributors
• Index