Disability, Citizenship, and Space in Highland Ecuador

Embodied Marginalities: Disability, Citizenship, and Space in Highland Ecuador

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Authors Rattray, Nicholas Anthony

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EMBODIED MARGINALITIES:

DISABILITY, CITIZENSHIP, AND SPACE IN HIGHLAND ECUADOR

Nicholas A. Rattray

______

A Dissertation Submitted to the Faculty of the

SCHOOL OF ANTHROPOLOGY

In Partial Fulfillment of the Requirements For the Degree of DOCTOR OF PHILOSOPHY

In the Graduate College

THE UNIVERSITY OF ARIZONA

2012

THE UNIVERSITY OF ARIZONA GRADUATE COLLEGE

As members of the Dissertation Committee, we certify that we have read the dissertation prepared by Nicholas A. Rattray entitled Embodied Marginalities: Disability, Citizenship, and Space in Highland Ecuador and recommend that it be accepted as fulfilling the dissertation requirement for the Degree of Doctor of Philosophy

______Date: March 1, 2012 Susan J. Shaw

______Date: March 1, 2012 Linda B. Green

______Date: March 1, 2012 Sarah A. Moore

______Date: March 1, 2012 Jason C. Pribilsky

Final approval and acceptance of this dissertation is contingent upon the candidate’s submission of the final copies of the dissertation to the Graduate College.

I hereby certify that I have read this dissertation prepared under my direction and recommend that it be accepted as fulfilling the dissertation requirement.

______Date: March 1, 2012 Dissertation Director: Susan J. Shaw

STATEMENT BY AUTHOR

This dissertation has been submitted in partial fulfillment of requirements for an advanced degree at the University of Arizona and is deposited in the University Library to be made available to borrowers under rules of the Library.

Brief quotations from this dissertation are allowable without special permission, provided that accurate acknowledgment of source is made. Requests for permission for extended quotation from or reproduction of this manuscript in whole or in part may be granted by the copyright holder.

SIGNED: Nicholas A. Rattray

ACKNOWLEDGEMENTS

I would like to thank the many people who supported, encouraged, and challenged me throughout my journey as a graduate student. I deeply appreciate the generosity and warmth extended to me during fieldwork in Cuenca. Although I use pseudonyms to protect confidentiality of the research participants, I would like to acknowledge each one of the participants from the two community groups and wheelchair basketball team that shared their time with me. Le agradezco que me haga sentir como parte de su familia. My will to finished has come in part from persistent queries from Cuenca about when I would complete my “tésis.” I hope this work brings awareness about accessibility issues, marginality, and social justice by sharing some of their stories. When starting graduate school, it can be difficult to comprehend the commitment involved in advising a student. I feel lucky to have had the opportunity to work with my advisor, Susan Shaw, who has been an outstanding mentor, able to balance meticulous intellectual engagement with pragmatic advice. I appreciate the sustained encouragement and provocative perspective provided by Linda Green. Jason Pribilsky generously shared his deep knowledge of the Andes and introduced me to networks of Ecuadorian scholars. Sarah Moore offered a nuanced reading of the dissertation and insights that I hope will extend to future work. These mentors and other have provided invaluable training in cultural and medical anthropology, geography, and Latin American Studies. I thank Steve Lansing, Diane Austin, Gary Christopherson, Tim Finan, Sarah Elwood, Sue Kroeger, Drexel Woodson, Sally Marston, and others from the University of Arizona. Thanks also to Ann Miles, Lynn Hirschkind, Walter Hartwig, Lisa Servon, and Susan Fainstein. In Ecuador, I would like to thank the dedicated staff of the Fulbright office in Quito, especially Karen Aguilar and Susana de Vaca. I am grateful to Bill Pitkin for his enthusiasm for studying Ecuador, and for introducing me to the wonderful Ayala Bedoya family. I appreciate the cooperation of staff at CONADIS in Quito and Cuenca and from a variety of Ecuadorian organizations working on disability issues. Thank you also to Tania Peillet and Natalia Martinez for assistance with translation. In Tucson and beyond, I value the vibrant intellectual communities I’ve joined. Many of the student groups have extended well beyond the classroom to involve engaged anthropology and autonomous writing partnerships. I especially would like to thank Brian Burke, Lauren Penney, Jacob Campbell, Karin Friederic, Jessica Piekielek, and many unnamed others for camaraderie and feedback; thanks also to Danny Knee and Heather McIntyre. I also thank my professors and colleagues from Berkeley, Rutgers, and the UCLA Center for Neighborhood Knowledge. This dissertation research was funded by a Fulbright IIE grant and the UA Excellence Graduate Fellowship. I am grateful for other support from the School of Anthropology, NASA Space Grant Program, Bureau of Applied Research in Anthropology, SBSRI, Center for Applied Spatial Analysis, Disability Resource Center, School of Geography, and the dedicated UA librarians. I am grateful for my entire family, especially my parents, Terry and David, brother Josh, and sister Julie (who read many drafts). My deepest thanks and respect goes to my wife Wendy Vogt for unfaltering support, inspiration and collaboration, and to our daughter Iris Qia who makes all the effort put into our projects entirely worth it.

DEDICATION

To the many people who shared their stories with me in Ecuador, and to Mike Harrington and Andy Donohoe of Berkeley, thank you for teaching me about ingenious methods for living independently and the art of demanding inclusion.

TABLE OF CONTENTS

LIST OF FIGURES ...... 9

LIST OF TABLES ...... 10

ABSTRACT ...... 11

CHAPTER 1 – INTRODUCTION ...... 14 A State of Emergency ...... 14 Rallying Against Public Invisibility ...... 18 Theoretical background ...... 21 Anthropological and historical approaches to studying disablement ...... 23 Theories of Embodiment and Space ...... 28 Biosociality, Citizenship, and the Governance of Disability ...... 32 Defining the Terms ...... 38 Research Themes and Outline of Chapters ...... 40

CHAPTER 2 – RESEARCH SETTING AND METHODS ...... 44 The Ecuadorian Context ...... 45 Studying Disability in Highland Ecuador ...... 47 Cuenca ...... 49 Local Hierarchies of Race and Class ...... 54 Disabled Ecuadorians ...... 56 Non-governmental assistance for disabled Ecuadorians ...... 57 Research Methods ...... 60 Participant Groups ...... 60 Ethics & Positionality ...... 65 Labeling Disability ...... 70 Interviews and Sample ...... 78 Data analysis ...... 83 Conclusions ...... 85

CHAPTER 3 – HISTORICAL CONTEXTS: THE PRODUCTION OF DISABLEMENT ...... 86 From Mining Accident to Wheelchair Basketball ...... 86 Historical Approaches to Conceptualizing Bodily and Behavioral Differences ...... 92 Structural Violence and Social Suffering ...... 94

Economic and Political Constraints in Managing Public Welfare ...... 99 Neoliberalism and the “Pink Tide” ...... 100 The State’s Role in Managing Disability ...... 105 Misrecognized as a Borracho...... 108 Conclusions ...... 112

CHAPTER 4 – VERGÜENZA AND THE SELECTIVE PRODUCTION OF ABJECT BODIES ...... 115 “No One Knew Me” ...... 117 Managing the Stigma of Disability ...... 119 Charity and Religious Expectations ...... 122 Fear of Contagion and Abjection ...... 123 Spatiotemporal Displacement ...... 127 Begging as a Livelihood Strategy ...... 134 Conclusions ...... 140

CHAPTER 5 – ON BEING DISABLED AND ‘OUT OF PLACE’ IN ECUADOR ..... 142 Navigating Inaccessible Terrain on the Ecuadorian Coast ...... 147 The Social Production of Steps, Stairs and Turnstiles ...... 158 Material constraints to independent living ...... 163 The Social Construction of Accessible Space ...... 175 Resisting, Avoiding, and Reconstructing Able-bodied Space ...... 179 Private and individual means of creating accessible space ...... 181 Constructing accessible community spaces ...... 183 The Phenomenology of Conventions ...... 186 Conclusions ...... 193

CHAPTER 6 – ECUADOR SIN BARRERAS: GOVERNING DISABILITY AND CITIZENSHIP ...... 196 Governing disabled bodies ...... 199 Enrolling Disabled Subjects ...... 202 CONADIS and the ESB Campaign ...... 204 Technologies of Governance ...... 206 The Biopolitics of Massive Enrollment ...... 210 Manufacturing a Crisis? ...... 213 Approving the Constitution ...... 215

Governing Disability in Cuenca ...... 218 Fragmented Biosocialities ...... 223 Hierarchies of Impairment ...... 225 Emerging Contradictions in Forging Productive Citizens ...... 229 The Uneven Effects of the ESB ...... 231 Conclusions ...... 235

CHAPTER 7 – EMBODIED DIFFERENCES AND DISABLED SUBJECTIVITIES 237 Disability and Technologies of the Self ...... 241 Contested Narratives of Disability and Rehabilitation ...... 248 Eugenia ...... 250 Norberto ...... 253 Joaquín ...... 257 Collective Management of Disabilities: Households and Cooperative Partnerships . 260 Acceptance and Independence in community-based rehabilitation ...... 268 Resisting Regimes of Accountability at SPD ...... 270 Rehabituation among Novidentes ...... 271 Athletics as Rehabituation: “The Chair is Our Feet” ...... 276 Conclusions ...... 283

CHAPTER 8 – CONCLUSIONS ...... 285 Highlights of Key Findings and Contributions ...... 287 Remaining Issues and Future Areas of Research ...... 291

APPENDIX A. KEY PEOPLE AND ORGANIZATIONS ...... 294

APPENDIX B: DISABILITY IN ECUADOR’S 2008 CONSTITUTION ...... 296

REFERENCES ...... 298

LIST OF FIGURES

Figure 1. Map of Ecuador ...... 13 Figure 2. Image of Rally with Message of Struggling Against Invisibility ...... 19 Figure 3: Social constructions of disability ...... 22 Figure 4. Map of the Azuay Province ...... 51 Figure 5. People with disabilities and “limitations” ...... 58 Figure 6. Wheelchair racing during a party at SPD ...... 62 Figure 7. ANA members conducting a simulation ...... 63 Figure 8. Wheelchair basketball players ...... 64 Figure 9. Cards handed out by disabled street people ...... 136 Figure 10. Going to beach as a group ...... 150 Figure 11. Inner tubes as a swimming aid ...... 154 Figure 12. SPD gathered at the church in Olón ...... 155 Figure 13. Turnstile at bus terminal ...... 169 Figure 14. Low-cost wheelchair made with plastic base ...... 176 Figure 15. Navigating a busy arterial street instead of using curb cuts ...... 178 Figure 16. Poster from the ESB campaign...... 205 Figure 17. Requirements to obtain CONADIS disability card ...... 207 Figure 18. Tax Benefits for Disabled Citizens...... 208 Figure 19. Vice President Moreno at Rally in Cuenca ...... 211 Figure 20. Painted Mural at ANA's community center...... 227 Figure 21. Dancing at SPD party ...... 278 Figure 22. Wheelchair basketball practice ...... 279 Figure 23. Rally for disability rights in La Plaza Grande ...... 286 Figure 24. President Correa waves to disability rights rally participants ...... 286

LIST OF TABLES

Table 1. Terms for Disability ...... 71 Table 2. Key Characteristics of Study Sample ...... 80 Table 3. Selected List of secondary sources ...... 82 Table 4: Population with severe disability over 5 years of age, by cause (2005) ...... 95

ABSTRACT

This dissertation critically explores the governance of disability, social marginalization, and spatial exclusion in highland Ecuador. Since the 1990s, disabled

Ecuadorians have moved from a state of social neglect and physical isolation to wider societal participation, fueled in part by national campaigns aimed at promoting disability rights. Many have joined grassroots organizations through biosocial networks based on the collective identity of shared impairment. However, their incorporation into the labor market, educational systems, and public sphere has been uneven and impeded by underlying spatial and cultural barriers. Based on twelve months of ethnographic research

I conducted among people with physical and visual disabilities in the city of Cuenca, this research analyzes narratives of disablement within the local disabled community. I focus on the consequences of living with embodied differences considered to be anomalous within environments designed for nondisabled citizens.

The study extends current scholarship on the social context of disability to a Latin

American country with significant ethnic and economic hierarchies, exploring disability as an important dimension of social stratification that is both produced and remedied by the state. In Ecuador, the social category of people with disabilities has emerged through historical processes and campaigns that emphasize the prevention of impairment and chronic disease, promotion of equal rights, and inclusive labor markets – all of which are part of a broader aspiration toward modernity. I argue that disability is often an overlooked but important, cross-cutting form of bodily and behavioral difference that creates multiple marginalities. Emphasizing social practices and structural dimensions of

12 disability shifts the attention away from approaches that foreground individual, psychological, or medical aspects of disablement and instead contributes to wider anthropological understandings of disability as socially produced, constructed, managed and enacted. In analyzing disability as a cross-cutting category, this research reframes disability as contingent on local constructions of normativity, highlighting how bodies come to be recognized as “abled” or “disabled” within particular productions of space and systems of un/marked subjects.

Figure 1. Map of Ecuador

CHAPTER 1 – INTRODUCTION

A State of Emergency

In July 2008, Ecuadorian president Rafael Correa declared a “state of emergency” with regard to the status of people with disabilities in Ecuador. Political speeches made by Correa and his Vice President, Lenin Moreno, a wheelchair user himself, drew upon stories that emphasized the social neglect of people with disabilities, such as cases of people tied up in sheds or hidden from public view in chicken coops. The administration pledged to reform rehabilitation systems, extend benefits, and clear the path for full citizenship. The Correa administration also integrated rights for people with disabilities into its successful effort to approve a new constitution in 2008.

While the declaration of a state of emergency was clearly politically motivated, it also brought into focus important debates about progress, modernity, and the role of the government in public welfare. President Correa’s new policies enabled the central government to legitimize itself as the arbiter of public debates around disability and care of marginalized communities. Given the primacy of democratic values in Correa’s revolución ciudadana (citizens’ revolution), ceasing to treat disabled people as second class citizens offered a hopeful political message.

The stories of shame, neglect and even “social death” that circulated within the political discourse of the early 2000s, like other accounts of disability elsewhere, touched upon an important and deep wound in the history of disablement in Ecuador. Spatial isolation and shame were common themes uncovered during my year of ethnographic research with disabled Ecuadorians and while many of my informants were skeptical

15 about political promises, they also recognized the historical importance of finally being seen. At a rally hosted by Vice President Moreno, people wore shirts that stated, “si no los vemos, desaparacen.” Literally, this translates as “if we don’t see them, they will disappear.” A more reflective interpretation would be “those who are unseen cease to matter.” These messages sought to reposition disability from a state of being hidden to a state that is publicly acknowledged— something that is neither silenced nor shamed.

Similar to advocates for disability rights in other parts of the world, Ecuadorians with disabilities made the issue of invisibility central to their organizing efforts.

Through ethnographic research with disabled Ecuadorians, this dissertation makes a critical intervention into anthropological understanding of how disability is socially produced. I draw on theories of embodiment, governmentality, political economy, and the social production of space to make the links between subject formation and structural inequalities. Following feminists and social scientists who emphasize the social construction of race, class, gender, and sexuality, I argue that disability is an often overlooked but important category of social analysis. Disability is not an additive category, but rather a cross-cutting form of bodily and behavioral difference that creates multiple marginalities within state and local hierarchies. Emphasizing social practices and structural dimensions of disability shifts the attention away from approaches that foreground individual, psychological, or medical aspects of disablement and instead contributes to wider anthropological understandings of disability as socially produced, constructed, managed and enacted. In analyzing disability as a cross-cutting category, I join other anthropologists interested in the ways in which individual bodies are linked to

16 particular productions of space and systems of un/marked subjects. Reframing disability as contingent on local constructions of normativity highlights how bodies come to be recognized as “abled” or “disabled.”

I frame this dissertation around three interconnected lines of analysis. Following disability rights advocates who reject the notion of disability as medical abnormality or individualized tragedy, I argue that disability is a social process shaped by systems of state governance, biomedicine, technology, and prevailing economic and cultural forces.

In Ecuador, the social category of people with disabilities has emerged through historical processes and campaigns that emphasize the prevention of impairment and chronic disease, promotion of equal rights, and inclusive labor markets – all of which are part of a broader aspiration toward modernity. Taking an ethnographic approach, I document how the shifting meanings of disability in Ecuador signify a broader transformation in the relationship between the state and embodied forms of citizenship. As the social category of personas con discapacidad has emerged, the historical neglect and social isolation of this group comes into greater clarity.

The second line of analysis centers on how debates around the social participation of disabled individuals are embedded within broader conflicts over the meanings of citizenship among marginalized populations. While national campaigns and local initiatives presented here promulgate new roles of the state in governing disability, they take place in what William Roseberry (1993) calls a common material and discursive framework. I investigate contention over issues such as accessibility, inclusive education, and workplace discrimination as “sites of struggle” that are jointly constructed by

17 dominant and marginalized actors, and that take place across multiple domains. I consider how increasingly visible disabled citizens still struggle against perceptions of them as anomalous subjects marked by deviant bodies. In the process, I examine the contradictions that arise as the state simultaneously perpetuates social exclusion based on bodily differences and serves as the site for entitlement claims on the basis of the status of being disabled.

The state’s role in remedying disability has led to new collectivities shaped by the responses of grassroots groups to new resources and opportunities for social action. A key objective of advocacy for disabled communities centers on contesting unequal access to transportation systems, buildings, and public space. The emphasis on barriers and spatial forms of exclusion made by disability advocates points to the non-neutrality of built environments. The normative citizen is assumed to able to hear, see, and move without impediment through the places they live and work. The “abilities” of unmarked individuals come into focus only as people with bodily impairments confront spaces designed for nondisabled users. I analyze the disjunctures between universalist policies of social inclusion and persistent forms of exclusion based on social stigma, discrimination, and fear of abject physical differences. Thus, the narratives of disabled individuals are a lens to understand the production and contestation of bodily differences, spatial order, and citizenship in Ecuador.

The third theme woven throughout this dissertation tracks how disability is enacted through social networks and the everyday presentations of self. In addition to institutional and spatial forms of governance, I also argue that disability is constructed

18 through meanings made across kin-based and secondary social networks. Households, community organizations, and athletic teams are all sites whereby cultural practices about disability are performed and enacted in the context of everyday life.

The remainder of this chapter offers an overview to the key literatures that have shaped this ethnography. I draw from texts and theory from the fields of medical and urban anthropology, critical disability studies, human geography, and Latin American and Andean Studies. I discuss anthropological approaches to studying constructions of disability, theories of embodiment and space, and scholarship on governmentality and citizenship. In addition, I establish basic terminology and present an overview of the dissertation chapters.

Rallying Against Public Invisibility

What should be asked is not how much it will cost to make a society completely accessible to all with physical difficulty, but rather why a society has been created and perpetuated which has excluded so many of its members. (Zola 1982a: 244)

Several months prior to the “state of emergency” declaration by President Correa,

I attended a rally for disability rights on a sunny Saturday in April 2008. The rally included a march through the central streets and ended in the historic plaza of San Blas.

The demands of the rally organizers were communicated through a series of speeches, signs, and interviews given to local media. One of the central messages came in the form of a plea written on the back of bright yellow shirts: ámame, inclúyeme, mírame (love me, include me, see me). These messages appeal to political, moral, and emotional motivations. One of the speakers emphasized how the practical issues disabled people

19 need assistance with, such as ramps at the bus terminal, would cost very little but require political will from Cuenca’s non-disabled taxpayers. While the speeches ranged from expressing outrage to logical arguments about costs and benefits, public awareness of disability identity was a message shared by all.

Figure 2. Image of Rally with Message of Struggling Against Invisibility

The rally reached its climax as the speeches progressed toward more sophisticated analyses of the status of the disabled community in Ecuador. A local disability leader, who I came to know quite well, asked rhetorical questions: How soon before people with disabilities will actually be able to secure jobs here in Cuenca? His most effective question dealt with the absurd: how can we participate in a municipal meeting about accessibility when it takes place on the third floor of a building with no elevator or accessible entrances? Taken together, this rally for disability rights represented a

20 collective struggle for legitimacy based on countering legacies of shame, lack of awareness, and broader social neglect. Disability advocates were attempting to shape the way that the public views disability – seeking to transform the idea of disability as tragedy into a source of pride. In contrast to the way that the Vice President’s campaign tended to reinforce the importance of rehabilitation of impairment, these actions are intended to engage in broader discussions in the realm of personhood rather than to resolve medical issues.

The rally at San Blas highlights the role that community organizations have begun to play in wider discussions of disability rights. People with disabilities are struggling against legacies of discrimination, neglect, and shame that persist in contemporary

Ecuadorian society (Molina Yépez et al. 2000; Torres Dávila 2004; Cazar Flores et al.

2005). While it is true that high-level politics emanating from the executive branch in

Quito have played an important role in debates around disability, I show how the meanings attached to bodily differences have begun to shift for those living with a disability in Cuenca. In contrast to the well-publicized state of emergency and high profile events that promote the celebrity status of the Vice President, the local dynamics that condition how members of disabled communities participate in social life in Cuenca are of primary importance.

Documenting how collective action can help articulate previously unseen or unheard stories is a path well-traveled by anthropologists. However, disabled people represent a subcategory of people whose history has not shown up in standard accounts.

[i]t is only when we integrate our different kinds of knowledge that the people without history emerge as actors in their own right. When we parcel them out among several disciplines, we render them invisible—their story which is also our story, vanishes from sight. -- Wolf (in Schneider and Rapp 1995: 7)

For Eric Wolf, listening for the stories produced by marginalized communities enables anthropology to appreciate the diversity of histories embedded in local fields (Schneider and Rapp 1995). Wolf’s call to take seriously the tendency to disarticulate the issues facing communities into different disciplines has also encouraged me to draw from a wide range of approaches that pertain to understanding disability. In addition to cultural and medical anthropology, I draw from human geography, disability studies, and other emergent work in the humanities that help illuminate the lives of people I worked with in in Ecuador.

Theoretical background

Susan Wendell (1996: 45) identifies four key elements of a constructivist account of disability. I have presented her framework as a diagram (see Figure 2) as a starting point to discuss social and cultural dimensions of disability. One important cause of disability stems from social conditions that fail to prevent damage to human bodies. As in many middle and low income countries, in Ecuador poor health conditions, lack of social protections, and limited social capital all contribute to the production of impairment. A second important factor I address more fully in chapter 5 deals with the inability or unwillingness to create inclusive social spaces.

The two elements on the right side of Figure 3 are interrelated. Disability, like other forms of bodily differences, exists in relation to bodies that are considered to be normal or non-disabled. As feminist theorists have pointed out, underlying the notion of universal subjects are assumptions about what makes a healthy, fit body (Grosz 1994).

Figure 3: Social constructions of disability

Orientation around ideally Social conditions that shaped bodies cause or fail to prevent (e.g. male, heterosexual, damage to people’s bodies “healthy body”)

Sociocultural systems of disability and bodily differences

Expectations of Unwillingness to create performance and cultural accessibility or ability for representations of bodily outliers to paradigm difference

These tend to be based on unacknowledged premises that such subjects are white, male, heterosexual, and usually constitute dominant groups. Moreover, an important requirement for meaningful social participation as healthy and productive individuals is premised on self-control of one’s body (Manderson 2011: 35). These perspectives point to the idea that meanings of disability are strongly affected by cultural representations and expectations of bodily difference.

Taking seriously how disability is socially produced means that it cannot be easily separated out from other factors such as gender, race/ethnicity, class, or geographic origin. Nor can disability be understood apart from its historical context. The socio- political phenomenon of people with disabilities forming community organizations throughout Ecuador has to be understood within a historical context of shame and social neglect that existed in the 20th century.

Anthropological and historical approaches to studying disablement

Although bodily differences and impairments have been recognized as fundamental in all human societies, “disability” as a social category is situated historically within the a Western context of public welfare and biomedicine (Scheer and

Groce 1988; Ingstad and Whyte 1995; Devlieger 1999; Ingstad and Whyte 2007). In preindustrial contexts, people with impairments have occasionally been thought to have special powers (Mauss 1972: 34), treated as potential threats to the social order (Douglas

1966; Barnes 1996; Thomson 1997: 33), or as measures of the health of the community

(Scheper-Hughes and Lock 1987). Prior to the twentieth century, people with disabling impairments or the “handicapped” were often considered abnormal and as a burden to society in European societies (Barnes 1996; Stiker 1999). People with physical anomalies, short stature, or “mental deficiencies” were also used as entertainment for royal courts, such as that of Philip IV of Spain and Montezuma in Mexico (Horsefeld

1940). In the early part of the twentieth century, the rise of “biomedicine” – a system of knowledge that privileges human biology, physiology, and “pathophysiology” (Hahn and

Kleinman 1983: 306) – shifted disability to a medical issue. Living with a bodily impairment gradually became a medical problem subject to prevention, treatment, and management.

Rather than analyzing the individual or medical aspects of having a disability, anthropological approaches tend to focus on “local meanings of anomalous physical/behavioral differences” (Shuttleworth 2004: 368). Kasnitz and Shuttleworth

(2001) argue that an “anthropology of impairment-disability” that incorporates theories of difference is more effective than the analytically imprecise term “disability,” and call for ethnographic research that incorporates three of anthropology’s key concerns. First, social phenomena must be embedded within their particular historical, cultural, and economic contexts. This dissertation examines the marginalization of disabled individuals in terms of their struggle for rights and social participation. Second, research on human societies should not divorce social agents from their material environment and embodied experience. In this work, I focus on the relationship between body and society, or in other words the practical considerations of negotiating life as a disabled Ecuadorian by navigating an often unfriendly urban environment. Third, anthropological perspectives emphasize the meanings and practices people produce through everyday living, or

Devlieger (1999) notes, “locally produced knowledge and cultural critique” about disability.1

1 Anthropology’s engagement with disability as a topic has been sporadic. One of the founders of anthropology, Edward Tylor, drew on the experiences of “deaf and blind” (Tylor and Bohannan 1964: 74-75). Medical and cultural anthropologists have drawn on a variety of disciplines

As many scholars have noted, disability has a paradoxical nature as the basis for social identity. On one hand, living with bodily or sensory impairments seems to imply a sort of corporeal stability (i.e. one who cannot hear, cannot walk). Disability has often been believed to be the result of illness, accident, misfortune, or other disabling event and thus not a “natural” aspect of the human experience (Michalko 2002: 5). In recent years, scholars have demonstrated that people with bodily and behavioral differences make up a relatively constant proportion of any human population (Scheer and Groce 1988), and that the boundaries between disabled and non-disabled depends on cultural and temporal context. Like medical anthropologists, disability scholars have adeptly shown that what is considered “normal” in terms of bodily capabilities in the United States has shifted considerably in the last century (Davis 1995; Garland-Thomson 1997; Longmore and

Umansky 2001). Even with particular impairment groups, factors such as “age on onset, time since onset, level of pain, visibility, ‘hideability,’ predictability, availability of accommodations, and social acceptability of impairments” (Shuttleworth 2004: 365) all play significant roles. Given that severity of disability or illness may fluctuate over time, discrete boundaries around what constitute a person with a disability are not easy to discern (Thomson 1997).

(academic and professional) including sociology, urban planning, geography, the humanities, education, law, occupational therapy/science and the emergency field of disability studies. Each of anthropology’s subfields has approached the topic of social exclusion in their distinctive way (Reid-Cunningham 2009). Archaeologists, for instance, have found evidence for ranking and exclusion on the basis of bodily differences; Hubert notes that people classified as mentally ill or physically disabled have been socially and physically excluded from society by dominant groups through “marginalizing them, oppressing them, or even eliminating them altogether” (2000: 1). This research selectively draws on cross-cutting themes from social science oriented research, anchored by anthropological scholarship.

Anthropologists have argued that social exclusion depends greatly on the relationships between disability and other aspects of social identity such as class, gender, and ethnicity. Contrary to widespread belief, people with impairments have often been well integrated into their local community (Scheer and Groce 1988). For example Goerdt

(1986), demonstrates how cultural beliefs in Barbados about what it means to be a productive member of society determines relative lack of social integration, not the nature of bodily impairment.2 Dissimilar to most other axes of social identity, any individual human being can instantly become disabled through injury (Murphy 1990).

Struggles for civil, political, and economic rights for people with disabilities that began in the 1970s were instrumental in establishing a framework for considering disability as a social identity. Although organized political movements were most prominent in the United States and the United Kingdom, governments and community organizations alike in other parts of the world focused on disability issues following the

United Nations Decade of Disabled Persons (1983-1992). As Michael Bérubé (1998: vi) has pointed out, within the recognition that categories like gender, race and sexual orientation are social constructed, “disability is perhaps the most unstable designation of them all.” Bérubé’s bold statement brings attention to disability as a universal category worthy of political and scholarly relevance. In addition, Bérubé also points out that

2 Although never a large body of work, ethnographers have made a steady contribution to disability-related scholarship. In earlier works, disability often fit into discussions of health, deviance, or treatment of social outcasts that were part of the social group under study. Key works include Edgerson’s (1984) investigations of people with mental retardation; Scott’s (1969)

27 according to the original definitions of intelligence and disability, everyone but Western

Europeans would have been disabled in the 19th century (Bennett et al. 2005: 88).

Disability is thus closely tied into ideas about key anthropological concepts of culture, progress, and modernity (Kohrman 2005: 24).

The instability of disability as a category is intimately tied to the purpose, construction and deployment of the category “human.” People with bodily and behavioral differences have at times been treated as sub-human for political reasons, as evidenced by the rise of eugenics in the early twentieth century.3 Disability has also been used as the justification for unequal treatment; as Baynton (2001) has noted in struggles for universal suffrage in the United States, attributing disabilities to women or African-Americans was deployed to deny civil rights. Other scholars have specified how different types of impairment are linked to hierarchies with local communities (Deal 2003; Devlieger et al.

2007). In most cases, people with intellectual and developmental disabilities are ranked as the least desirable types of impairment (Shuttleworth 2001), whereas physical disabilities are often accorded higher value, with visual and hearing impairments somewhere in the middle range (cf. Goerdt 1986: 460). Scholars have also extended discussion of the hierarchy of impairment to include all human variation, arguing that

3 Eugenic projects were a distinctive effort to promote the “scientific” effort to improve populations by discouraging reproduction by selected individuals, and spread from Europe throughout the Americas (Wullen 1937; de la Cadena 2000). In the early 20th century, Social Darwinists and proponents of eugenics urged forced sterilization of the handicapped (Coleridge 1993: 47; Barnes 1996: 56).

28 since being disabled can happen to anyone at any time, we should label those without a disability as “temporarily able-bodied” (Shapiro 1993; Breckenridge and Vogler 2001).

Theories of Embodiment and Space

The contributions of scholars working on the anthropology of the body (Mauss

1973; Blacking 1977; Bourdieu 1977; Jackson 1983; Turner 1984; Scheper-Hughes and

Lock 1987; Csordas 1990; Frank 1990) are useful in examining the relationship between the state and the formation of disabled bodies.4 Anthropologists have explored how the heightened role of corporeality for people with physical and sensory impairments calls attention to social constructions of space, or what Low (2003) terms “embodied space.”

Building on anthropological theories of the body and specifically the notion of

“embodiment” (Merleau-Ponty 1962; Csordas 1990; Lock 1993; Csordas 1994), embodied space refers “the location where human experience and consciousness take on material and spatial form” (Low 2003: 10).

Along with broader theories of embodiment, embodied space offers an avenue for interpreting the importance of spatial orientation and physical limitations within

“environments built on the assumption that everyone is young, strong, tireless, healthy, of similar size and shape, independent and with all physical and mental components and in perfect working order” (Kudlick 2003: 769). Built and social environments have been

4 Anthropological reviews of literature theorizing the body in the human sciences include a volume edited by Lock and Farquhar (2007), Lock (1993), Sharp (2000) and van Wolputte (2004).

29 constructed for particular users and purposes that can reveal cultural assumptions about how space will be used (McDermott and Varenne 1995; Rodman and Cooper 1995). For instance, steps and curbs are non-neutral methods of dividing space that constitute a known barrier for people who use wheelchairs or rely on technical aids like canes.

The exclusion of particular types of bodies from urban spaces likewise functions as a means of controlling the social order. Building on theories on “matter out of place”

(Douglas 1966, 1991), scholars have discussed how strategies of social exclusion can stem from extrapolation of fear or dread about infection of the social body (e.g. Cresswell

1997). Strategies of exclusion can be explicit, in the form of direct discrimination or physical barriers, and it can also take less visible forms, as Page and Thomas (1994) propose in their analysis of the construction of “White Public Space.” As in the case of white privilege, access to urban space depends on able-bodied individuals who control gatekeeping devices; security guards, medical professionals, bus drivers, and business owners are all examples of actors with the ability to prohibit or enable access to able- bodied space in Ecuador. Relatively unimpeded access to public space is a crucial plank on which able-bodied privilege rests and is sustained. Conflict over public efforts to increase the accessibility of urban environments reveals how space is mutually constituted through not just bureaucratic means of social control and resistance from users of the urban environment (Rabinow 1989; Feldman 1991; Low and Lawrence-

Zúñiga 2003). In recent years, disabled citizens have begun to pressure local officials to promote policies that lead to accessible environments.

The management of disability in highland Ecuador depends in part on the meaning of disability within households. This reflects a sociocentric model of personhood where family relations are paramount and disability is subsumed and managed within the household (Ingstad and Whyte 1995; Inhorn and Bharadwaj 2007).

As in other parts of Latin America, people with bodily differences were historically hidden from the public sphere and spent the majority of their life at home (Aptekar 1983).

Sequestering family members with disabilities has been a spatial tactic for dealing with the sense of vergüenza (shame) associated with impairment. Vergüenza is typically associated not just with individuals but with entire households, and thus becomes an explanation for seclusion or abandonment (Groce 1997). Torres Dávila (2004) notes that for households in Quito, mothers and other kin shoulder the primary burden in caring for disabled family members. Thus, disability impacts the fulfillment of expected gender roles for all members of the household, not just the disabled individual.

Disability has also been conceptualized in terms “biographical disruption.”

Drawing in part on Murphy’s (1987) proposal that being disabled entails a form of semi- permanent liminality, theories of disruption address the heightened sense of corporeality experienced though acquisition of disabilities through accidents or illness (Bury 1982).

Injuries or disease make individuals aware of processes that they previously took for granted while healthy (Leder 1990). In contrast to healthy bodies where the body can be viewed as “recessive,” people who acquire disablement go through periods of altered embodiment that disrupt modes where body was previously in “autopilot” (Jaye and

Fitzgerald 2011: 387). Scholarship in this area often draws on the extensive literature on

31 illness narratives (Miles 1998b; Mattingly and Garro 2000; Antelius 2009; Buchbinder

2010).

To summarize, anthropological approaches to bodies and space help frame disability as a socio-cultural phenomenon formed through the interaction of people with bodily differences in particular environments. Thus, contestation over space implies much more than straight-forward debates about accessibility of physical barriers.

Disabled bodies have come to symbolize particular locations of the governance of citizens. As Feldman (1991: 8) reflects, the “body becomes a spatial unit of power, and the distribution of these units in space constructs sites of domination.” Political power is exercised through the regulation of urban environments. Moreover, sites of exclusionary space do not refer solely to individual bodies, but arise through social relations in embodied interactions. Throughout this dissertation but especially in chapter 5, I emphasize the importance of space as a way to understand the experience of disability in

Ecuador. But it is also important to recognize how all individuals are governed in space based on their propensity for social contamination, their corporeal needs and abilities, and the amount of disorder that their presence might cause in public. More broadly, I investigate how meanings of disability in Ecuador serve as a lens to understand how boundaries are constructed around bodily anomalies and among marginalized groups.

Despite their significance for anthropological theorizing on embodiment and the social production of collective identity, little has been written on how these movements have developed in Latin America.

Biosociality, Citizenship, and the Governance of Disability

In exploring citizenship and the social experiences of Ecuadorians with disabilities, I expand on scholarship that situates disability within a broader framework of difference, stigma, and the cultural specificity of bodily impairment (Scheer and Groce

1988; Stiker 1999; Frank 2000; Ingstad and Whyte 2007). Anthropologists and other social scientists have drawn upon theories of the body and biopolitics to theorize the intertwined relationship between power and the disciplinary knowledge of the health professions. Inspired by Foucauldian formulations of biopolitics, theorists of governmentality have argued that the focus of state regulation has shifted from governance of space and territory toward the governance of populations (Rose 1996a;

Dean 1999) which include new political technologies that seek to rationalize the governance of disabled populations (Kohrman 2005; Tremain 2005b). I build on the work of anthropologists who integrate theories of biopolitics with careful attention to how spatial forms of governmentality operate in local fields (Rabinow 1989; Merry 2001;

Chappell 2010).

Medical anthropologists bring together scholarship on the implications of structural inequities on health outcomes with the production of health subjectivities

(Scheper-Hughes 1992; Farmer 2004; Whyte 2009). Different models of health care imply emerging types of patient/consumer subjectivities, which are produced not just in a top-down manner by biomedical practitioners and public health officials, but by media, social movement organizations, and individual agents (Briggs 2003, 2004). Particular

33 social groups have unequal access to debates over what makes a healthy, productive citizen (Shaw 2006).

Scientific and technical classification systems produce categories of humans, or ways of “making up people” (Hacking 2007: 285). In part to resist such classifications,

Hacking (2006) notes how advocacy groups have arisen for and by people at risk of becoming ill. New political configurations, genetic technologies, and collective resistance to biomedical models of health have begun the erode traditional lines between experts and lay people (Heath et al. 2004). Usually based around conditions with some ostensibly biological basis – like autism or Alzheimer’s – advocacy groups increasingly seek to interpret genetic testing and research. This is similar to groups such as AIDS activists that have appropriated medical knowledge by becoming “experts” through contesting medical definitions (Epstein 1995). Disability activists and health professionals have entered into highly contested debates around risk and reproductive rights by becoming educated consumers of health (Pfeiffer 1993; Rapp 1999).

As many biomedical systems shift toward neoliberal models of care, medical responsibility is being transferred to the client/consumer (Rose 1999). Specialized treatment on the basis of biosocial identity is akin to the notion of cultural competence, where particular social groups seek to be recognized as requiring specific sets of entitlement (Shaw 2005). Under these conditions, parents who “knowingly” give birth to children with an impairment after genetic counseling risk internalizing the financial costs of their decision and may choose to abort (Rapp 1999). Many disability activists label such selective abortion as neo-eugenic state policies (Saxton 1998). In many developing

34 countries, a major focus of public policies centers on the prevention of disease and disability. Arguing that many disabilities are preventable with improved prenatal care and patient education, recent public policies in Ecuador have prioritized preventative measures (Cazar Flores, et al. 2005).

As medical technology and knowledge permeates modern life, it generates new types of social relations and new forms of personhood. “Biosociality” describes how individuals (and their family members) with particular genetic traits or physical conditions organize around aspects of their physiology (Franklin 1995; Rabinow 1996).

One avenue of struggle against disabling social conditions is the formation of

“fellowships” geared toward collective action (Kohrman 2005; Whyte and Muyinda

2007). Das and Addlakha (2001) proposed limits to the applicability of the biosociality framework, arguing that in addition to biosocial or environmental conditions, the way that impairment is enacted through domestic networks in public sites plays a crucial role

(see also Staples 2011).

Disability is not a shared condition in the strict sense, but rather a recognition of the commonality of profound differences; disabled people strategically construct a sense of unity as a political project despite the fact that what is shared is “idiosyncrasy, functional diversity, and aesthetic impropriety across bodies” (Mitchell and Snyder 2010:

183). Zola (1972, 1982b, 1985) argues that the overall societal shift toward the

“medicalizing of society” was even more pervasive for disabled people; biomedicine had subjected them to forced sterilization, segregated housing, and viewed them not as people, but solely as pathological impairments. The shift toward a medical definition of

35 disability plays an important role in producing common experiences not just for highly specific conditions but also across broader categories of disability such as “mobility” impairments or “sensory” impairments.

Rapp argues that even as biomedicine “encourages enrollment in categories of biosociality, these claims do not go uncontested, nor are these new categories of identity used untransformed” (Rapp 1999: 302). Thus, one way to understand how much biopolitics manifests is to examine its role in the rise of various social movements for disability rights that have arisen in the last few decades. Following the United Nations

Decade for Disabled Persons (1983-1992), several nations created new initiatives aimed at improving the lives of their disabled citizens. These efforts often led to the formation of new bureaucracies and radical changes in the experience of disability (Charlton 1998).

Although many nations have significantly improved the legal rights of their disabled citizens, research suggests that the state plays a limited role in ensuring equal opportunity and access in many non-Western societies action (Ingstad and Whyte 2007; Whyte and

Muyinda 2007).

While the collective experience of impairment or damage can serve as the basis for biosociality, it is important to tease out the fragmented and localized aspects of such interrelationships (Roberts 2007; Guell 2011). Given Ecuador’s model of public health and citizenship, there is limited explanatory value to concepts of “biological citizenship”

(Petryna 2002; Rose and Novas 2005) developed in Euro-American contexts. Roberts

(2008) demonstrates that Ecuador’s fragile civil society, inadequate medical infrastructure, and legacy of racial ideologies complicate the relationship between

36 biology and personhood. In chapter 6, I focus on the relationships between embodied differences and personhood implied by local investigations of biosociality (Friedner

2010) among disabled communities.

In considering the how people with disabilities are being shaped as citizen- subjects, Ong’s (1996: 738) concept of “cultural citizenship” captures how practices and beliefs that arise in “negotiating the often ambivalent and contested relations with the state and its hegemonic forms that establish the criteria of belonging within a national population and territory.” This notion of citizenship attends to the influence of transnational processes, civil institutions, the state, and community groups as well as positioning of subjects along lines of class, gender, and race. 5 In chapters 4 and 6, I draw from notions of biological, cultural, and genetic citizenship to consider how disabled

Ecuadorians have struggled against legacies of stigma and exclusion to wider social membership and participation. Kohrman contends that in the absence of local service provision, disabled people have joined together in brother/sisterhoods. In this research, I refer to these groups as “second families” or “second homes” where people participate in crucial social networks that for many are just as important as their primary household.

Drawing from fieldwork in China, Kohrman (2005: 24) notes how disability can be an

5 For other concepts that relate health care politics, entitlement, and subjectivities, see “medical citizenship” (Nichter 2008: 172) and “therapeutic citizenship” (Nguyen 2005: 126).

37 index for modernity: the state’s treatment of marginalized citizens indicates the achievement of particularly valued version of modernity.

From the perspective of disability activists, the drive toward citizenship rights has positively strengthened the ability of disabled people to organize around a collective identity. Through the discourse of a liberal rights framework, these advocates link discrimination based on bodily status to citizenship rights (Barnartt and Scotch 2001).

Despite substantial differences in gender, class, ethnicity, and family situation, in many locations people with disabilities have formed associations based on their mutual affinity and shared oppression (Campbell and Oliver 1996; Charlton 1998). One of the ways that people have been struggling against disabling social conditions has been through the formation of “fellowships” geared toward collective action (Kohrman 2005; Whyte and

Muyinda 2007) . People with disabilities who use assistive technology (e.g. crutches, wheelchairs, leg braces, hand-crank tricycles) have literally and figuratively mobilized through “self-help,” cooperative groups.

Literature on the governance of disability offers insight into how the experience of disability is simultaneously shaped through cultural beliefs, state policies, the dissemination and rearticulation of biomedical knowledge, and the collective identity forged on the basis of a shared impairment. Inclusive models of citizenship based on the medical and bureaucratic validation of bodily impairment are important factors in the way that government attempt to manage disability at the population level. Yet no less important are the ways that social suffering is contested and shaped through intersubjective experiences (Kleinman et al. 1997). Grassroots collectivities that aim to

38 support people with disabilities and challenge medical expertise are key sites of struggle against biopolitical initiatives of the state.

Defining the Terms

The dominant trend in disability studies has sought to shift analysis away from individualized notions of impairment toward a focus on disabling political, environmental, and structural factors (Oliver 1990; Shakespeare 1993; Barnes 1996).

However, most studies of disabled populations have been conducted in North America and Europe (Shakespeare 1993; Whyte and Ingstad 1995; Imrie and Edwards 2007;

Ingstad and Whyte 2007). While debates over the definition of the term disability have surfaced in the last few decades, anthropologists focus on how disabling conditions affect people’s lives within local worlds (Whyte and Ingstad 2007: 11). This research examines the emergence of the social category of personas con discapacidad (persons with disabilities) in contemporary highland Ecuador.

The World Health Organization (WHO) has specified universalist definitions that have been used to compare conditions across countries (World Health Organization 2001;

Imrie 2004). The most recent revisions, known as the International Classification of

Functioning, Disability, and Health (ICF),6 attempted to balance biomedical and societal

6 The ICF is “a “bio-psycho-social model” that “represents a workable compromise between medical and social models. Disability is the umbrella term for impairments, activity limitations and participation restrictions, referring to the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors)” (World Health Organization 2011: 4).

39 concerns and specify disability as a phenomenon that can be experienced by anyone, not solely by a recognizable minority (Bickenbach et al. 1999). In 2011, the WHO published its inaugural “World Report on Disability” (World Health Organization 2011) as a guide for governments seeking to implement the United Nations Convention on the Rights of

Persons with Disabilities (CRPD). The CRPD entered into force in 2008 after being ratified by twenty nations – coincidentally, Ecuador was the twentieth signatory.

While it is true that constructing culturally neutral definitions through protocols like the ICF has proven problematic (Whyte and Ingstad 2007: 12-13), universalist definitions play a significant role in determining how disability is measured in Ecuador.

The ICF forms the basis for the survey conducted in Ecuador in 2004 (Cazar Flores, et al.

2005: 6) with the terms discapacidad, deficiencia, and limitación. The report uses the term persona con discapacidad to specify an individual with a limitation in executing activities, such as walking, that originates from an impairment and is non-temporary. The term deficiencia corresponds to impairment in English, and refers to problems or alterations in body structure that last for more than one year. Persona con limitación designates an individual with a limitation in activity, and is categorized into three gradations: grave (severe), (moderada) moderate, and leve (mild). Thus, the term discapacidad is intended to be generic in some sense and includes people with various forms of impairment and limitations in their activities or participation.

Throughout this dissertation, I discuss how these official definitions shape the way that disability is perceived, governed, and contested in local contexts. Since I discuss how official terms and more colloquial labels are used in everyday speech in more detail

40 in chapter 4, here I would like to point out that discapacidad does not neatly translate into the English word disability, which itself is a highly contested term. For the purposes of this research however, I refer to people I interviewed as “disabled” people (or

Ecuadorians, Cuencanos, etc.) on the basis that by and large they have used the term

“persona con discapacidad” to identify themselves. I generally use the term “disabled” first rather than “people-first” language.7 “Disabled people” emphasizes disability as a social, political and economic process that affects communities of people in collective ways.

Research Themes and Outline of Chapters

To understand the social dimensions, governance, and production of disability, I focus on several themes that engage with meanings of bodily difference in Ecuador. The chapters primarily draw from ethnographic data with disabled Ecuadorians to understand how embodied differences have become an issue of heightened social importance in

Ecuador. On a practical level, this entails understanding how people with disabilities and their supporters cope, manage, and present themselves with their impairments in everyday life. On a broader level, my objective is to understand how these experiences relate to wider political and economic forces and meanings of embodiment in Ecuador.

My approach to embodied differences emphasizes (i) the economic causes and

7 Although premised on the understandable rhetorical move to discourage the dehumanizing referent “the disabled” (or “the handicapped,” “the blind,” etc.), people-first language reinforces the idea that disability is an individual issue of bodily dysfunction, not a public issue or the basis for social identity (Titchkosky 2001).

41 consequences of disablement, (ii) how spatial inequalities can lead to marginalization, and (iii) the role of disability as the basis for collective identity. I demonstrate that although the social status of disabled Ecuadorians has shifted from a basic social neglect to limited forms of economic and societal integration, they remain severely marginalized in comparison to nondisabled Ecuadorians.

As the government has become more involved with governing disability, its role in both producing and remedying disablement has generated a series of contradictory effects. I contend that as these forces have made disability politics increasingly visible in

Ecuador, new cultural terrains that deal with accessibility, stigma, and the sanctity of the body politic have been threatened. A close reading of these cultural shifts indicates that social mobility implied by government--sponsored programs will continue to clash with persistent forms of social exclusion and hierarchy.

This dissertation is presented in eight chapters. Building on the literature review and background introduced in this chapter, the second chapter describes the research setting and methodology. Cuenca represents an intriguing location for studying bodily difference given its sizeable population of people with disabilities, concentration of advocacy organizations, and role in the national imaginary. The main research methods employed in this research included structured participation observation and semi- structured interviews with Ecuadorians who identified as personas con discapacidad in

Cuenca, including members of community organizations and a team of wheelchair basketball players. Additional interviews were conducted with disabled and non-disabled individuals in other sites in Ecuador including Guayaquil and Quito.

Chapter 3 explores historical factors that frame the status of disabled Ecuadorians by engaging with anthropological theories of structural violence. While the state has garnered international attention for its disability policies, this masks the role that the state plays in producing disablement. I analyze how economic restructuring, political instability, and shifts in the meaning of citizenship and public welfare have impacted disabled populations.

I consider how popular understandings of disability are shaped in Ecuador in chapter 4. I situate these narratives within the personal management of stigma, spatiotemporal disjunctures between modern and traditional treatment of disability, and the fear of contagion. In addition to ethnographic data, I analyze how printed paraphernalia related to begging reflects cultural representations of disability in Ecuador.

Chapter 5 examines the relationship between spatial barriers and the cultural politics of accessibility. I argue that inaccessible physical and cultural terrains mark disabled people from non-disabled Ecuadorians, which reinforce exclusionary practices and the role of vergüenza in the social meaning of disability. I demonstrate the interdependency of physical and social barriers by examining inaccessible terrain on the

Ecuadorian coast, urban transportation challenges, and local strategies of creating inclusive community spaces.

Chapter 6 analyzes historical shifts in the way that national and local state institutions manage disability. This chapter employs the notion of biological citizenship to understand how people with disabilities engage with and resist bureaucratic and biomedical approaches to managing impairments. I analyze state-based approaches aimed

43 at prevention of disability alongside community-based efforts that challenge biomedical frameworks about health and the body. I suggest community organizations in Cuenca have several overlapping agendas: economic empowerment, contesting biomedical narratives of disability, inclusive social spaces, and cultural forms of community-based rehabilitation.

Chapter 7 discusses disability as a subject position managed on personal, household, and community levels. I draw on theories of performativity and bodily practice such as Manderson’s (2011: 96-105) notion of “rehabituation” to consider how self-management of impairment creates a form of embodied citizenship (Russell 2011).

In particular, I present diverse narratives from wheelchair basketball players to analyze how disability is “enacted” through social networks and self-presentation.

The final chapter considers the wider implications of the research and offers future directions for study. I reflect on how anthropological approaches to disability can contribute understanding the cultural, economic, and spatial dimensions of difference. I point to the potential for anthropology in illuminating hidden histories of communities that have experienced legacies of social neglect.

CHAPTER 2 – RESEARCH SETTING AND METHODS

This chapter discusses the local research setting in Cuenca, Ecuador, outlining key demographic considerations, and describes the methods and study participants. I conducted twelve months of ethnographic fieldwork in Ecuador during 2008 through participation observation, interviewing, and secondary data analysis. I primarily worked with three groups in Cuenca: a regional association of people with disabilities, a local society of visually impaired individuals, and a group of wheelchair athletes.

My discussion of methods includes the ethical and practical challenges of working with a highly marginalized group. Since it is ethnographic in nature, I view this project as a product of “situated knowledge” (Haraway 1988) that is partial, complex, and dependent on my positionality as the researcher. My voice is present throughout this dissertation as an interpreter of events that only took place in relation to a specific group of people in conversation with me. It is well established that ethnographic writing brings those engaged in fieldwork into ethical relationships that create opportunities to connect larger social processes to individual lives (Marcus and Fischer 1986). As Biehl (2005:

20) explains, this type of engagement involves “identifying the ordinary, violent, and inescapable limits of inclusion and exclusion,” but also the challenge of making sense of the world from the perspective of those we work with. While I consider a range of theories germane to social meanings of bodily differences, in this work I have tried to maintain a focus on the experiences of living with a disability in Ecuador.

The Ecuadorian Context

As noted by travelers and scientists alike, Ecuador is a land of many contrasts. It is located on the northwestern coast of South America, with an area of just over 256,000 km2, and is one of the smallest countries on the continent. Ecuador is divided into four regions. The easternmost area is the Amazon forest region (often called las amazonas or la selva), which makes up roughly half the total land area. The coastal area (la costa) and the central highlands (la sierra) support the majority of the population. Each of these two zones comprise one quarter of the national territory, with the tiny remainder made up of the Galápagos Islands. The Andes mountain range splits the mainland into two areas, and creates a disproportionately high number of ecosystems and corresponding abundance of life. Its biodiversity exceeds that of the United States, a nation 375 times larger. The country is richly abundant in natural resources, which has led to a sizeable extractment industry (mining and petroleum), as well vigorous tourism and agricultural sectors.

Ecuador’s population is just over 14 million people (INEC 2009). Although it is one of the smallest countries in South America, it is densely populated with roughly 47 persons per square kilometer. In 1974, Ecuador was 59% rural and 41% urban; by 2008, the majority (57%) had moved to urban areas (INEC 2009). In addition to Spanish, at least twenty languages are spoken in Ecuador. Roughly one million and a half

Ecuadorians speak one of the nine dialects of Quichua, with the remainder speaking languages particular to indigenous groups who reside in the lowlands areas in the

Amazon and pacific basins.

In recent decades, Ecuador has experienced considerable economic growth but with increasing levels of inequality. The World Bank categorizes the nation as

“moderately developed.”8 Wealth is highly concentrated among a small minority of the population, and several large business groups hold monopolies in key industries (INEC

2009: 277-292). The distribution of wealth has been slowly becoming more unequal over the last decade (INEC 2009).9 The richest ten percent of households outspends the poorest ten percent by a ratio of 45 to one. These figures demonstrate substantial wealth inequities that are among the highest in the region. In addition, 9.8% of Ecuador’s population live on less than $1.25 per day, which is the World Bank’s (2008) internationally recognized extreme poverty line.

When I did my fieldwork in 2008, the country had entered into a political period that would be considered highly unstable in most countries, but was relatively calm compared to the previous decade. Prior to Correa’s election in 2006, Ecuador had faced significant economic and political turmoil following the adoption of the US dollar

(dolarización) as the national currency in 2000. High foreign debt10 and the deleterious consequences of neoliberal structural adjustment programs made governing difficult

8 Ecuador’s ranking in the World Bank Human Development Index (2008) is 0.772, which gives the country a ranking of 89th out of 177 countries. As of 2011, Ecuador’s GNI per capita was $3,850 placing it at the upper range of lower middle income ($1,006–3,975) countries. According to the World Bank, GNI is the gross national income divided by the midyear population, calculated in US dollars. 9 The GINI coefficient hovered around 0.50 in the last several years (European Commission 2007). The GINI coefficient measures the degree of inequality in asset or income distribution, with “1.0” indicating that all assets are owned by a single individual, and ‘0.0’ indicating that assets are perfectly distributed among the whole population. 10 The World Bank (2011) measured Ecuador’s foreign debt at $USD 13 billion in 2009, which amount to 22% of its gross domestic product.

(Gerlach 2003; Larrea 2004). In addition, the rise of what has been considered the most powerful indigenous movements in the region has also profoundly shaped national politics (Meisch 1992). Indigenous communities and organizations have opposed neoliberal policies, contributed to the removal of at least three presidents, and institutionalized pluriculualism and bilingual education (Clark and Becker 2007; Becker

2008). Correa’s attempt to pass a new constitution in 2008 created Ecuador’s twentieth since independence and aimed to consolidate his political power. I discuss the effects of adopting the US dollar as its national currency and the consequences of neoliberal policies in chapter 3.

Studying Disability in Highland Ecuador

Any scholar who begins to delve into a topic suddenly sees evidence of it everywhere. It is as if blinders had been removed; an automatic self-censoring mechanism inside the brain suddenly ceases to function. (Brandes 2002: 25)

How it was it that this small, relatively poor Andean nation was recognized as an international model for disability rights? My initial interest in studying disability issues was piqued by the contradiction between Ecuador’s model of relatively progressive disability policy, and the persistent marginalization of its disabled citizens. Building on prior research experience with disability issues in the United States, I began to explore the possibility of studying similar themes in South America in 2005. In discussing my initial ideas with colleagues and friends, I discovered that a commonly-held assumption is that Latin Americans with disabilities face inaccessible environments and significant social exclusion. I became aware that Ecuador represents a fairly unique case when it

48 comes to the status of disability rights. Although it is a developing nation with relatively little social spending, it has also become an international leader in the area of disability policy.

Following the United Nations Decade for Disabled Persons (1983-1992), Ecuador was one of several nations that created new initiatives aimed at improving the lives of their disabled citizens. In 1996, the Ecuadorian government formed CONADIS, the national agency for people with disabilities. In 2002, Ecuador became the first country in

Latin America to receive the “Franklin D. Roosevelt International Disability Award,” an honor that recognizes countries demonstrating progress toward societal inclusion for people with disabilities. The message projected was that since Ecuador’s ability to serve its most disadvantaged citizens was so limited, its efforts were considered extraordinary and indicative of modernity and progress. Yet from living in Ecuador and speaking with disability advocates in exploratory fieldwork, I also had the sense that the vast majority of people with disabilities in Ecuador were virtually untouched by the state. My initial research puzzle was to understand what appeared to be an anomalous case: How did

Ecuador reach the point of international recognition, and under what political and economic conditions? What were the relative contributions of grassroots social action and state-led efforts in increased pressure for disability rights? Was this a case, as Ingstad and

Whyte (1995: 10) suggest in writing about the global South, where disability has barely emerged as a cultural concept or as source of meaningful political identity?

During exploratory fieldwork in 2005 and 2006, I learned more about the contradictory circumstances that disabled Ecuadorians experience. Exposure to new

49 locations and speaking about disability helped me remove the perceptual “blinders” mentioned by Brandes in the epigraph above. I conducted interviews with staff at

CONADIS and discussed the topic of disability with anyone who was willing to offer their opinion. While there had been some progress with increased architectural accessibility, there was also considerable evidence that stigma and pity remained widespread societal responses. The Vice President of Ecuador, Lenin Moreno, was a wheelchair user, yet accessibility for wheelchairs was at best in the planning stages. The agency responsible for disability policy had been set up nearly a decade earlier, but was just beginning to establish a regional presence outside of the capital. In short, the status of people with disabilities was ambiguous. I hypothesized that exclusionary forces stemming from having a disability could not be divorced from the discrimination and minimal economic opportunities that other similarly marginalized communities face in

Ecuador.

Cuenca

After exploring potential locations for ethnographic research, I established institutional contacts in the city of Cuenca, deciding that it would the site for the bulk of my dissertation fieldwork because of its manageable size, urban infrastructure, and range of disability organizations. Known by its inhabitants as the “Athens of Ecuador” for its distinctive architectural and intellectual heritage (Miles 2004: 25), Cuenca is the third largest city in Ecuador (INEC 2009). It is also the capital of the Azuay province, which in

2010 had a population of 712,000 (see Figure 4). According to preliminary data from

2010 national census, the province of Azuay has grown by nearly fifteen percent since

2001. Approximately 600,000 people live in the metro area of the Cuenca canton, and roughly 331,000 inhabitants within the city proper (the urban parishes that make up the municipality of Cuenca).11

Cuenca was designated as a “world heritage site” in 1999. According to

Cuencanos, the designation (known as el patrimonio) confirms the city’s world-class status and is a great source of civic pride. In addition to its colonial architecture and plethora of churches, Cuenca is also known for its appealing climate, its greenery, and the four rivers that splice through the city. For nearly a century, Cuenca was also the primary site of exporting sobreros de paja toquilla, popularly known as “Panama” hats (Miller

1986), which played an important role in the economy of the Azuay-Cañar region

(Domínguez 1991; Pribilsky 2007: 57-63). Many of the people I spoke with expressed tremendous pride in their hometown, proclaiming its tranquility, climate, and cleanliness.

Such amenities also contribute to the cost of living, which is considered to be the highest in Ecuador (INEC 2009).

Since the late 1960s, a number of high quality ethnographies have documented the cultural aspects of life in Cuenca. Scholars have often emphasized the role of local elites and their control of cultural and economic power in the region. The city continues to function as the symbolic capital of the southern portion of highland Ecuador. Pribilsky

11 Ecuador is divided into 23 provinces. Provinces are further subdivided into cantons, and parishes (which are either urban or rural).

(2007: 38) points out that it is collective history and a shared ethnic identity, more so than geographical boundaries, that holds people from the Cañari-Azuay region together.

Figure 4. Map of the Azuay Province

In the 1970s, Brownrigg (1972) brought attention to the legacy of the land- holding patterns of the Cuencan aristocratic class in the Azuay region. The emphasis on power and class continued with Hirschkind’s (1980) ethnography of the social dynamics of elites. Hirschkind distilled Cuenca’s rigid social hierarchy into distinct social classes, arguing that local elites continue to exact a firm grip on social institutions, limiting the opportunity for social change throughout the class system. Palanca, or the system of

52 networking that relies on personal ties, ensures that most jobs and economic opportunities are tightly controlled. Stark (1981: 390) elaborates on the role that palanca plays in social stratification as a marker of the “relative power” gained through prestige and social connections. As Miles demonstrated in her study of ideological resistance and gender among rural migrants, social opportunity in Cuenca stems from family connections:

Everything from registering children at a particular school to getting telephone service is more easily accomplished through palanca (literally, leverage). Those in the upper classes carry surnames that instantly bring respect, and they have dense networks of individuals that they can call upon for assistance. In contrast, those at the bottom of Cuencan society, like rural-to-urban migrants, are relatively bereft of palanca. For poor people in Cuenca, establishing influential networks is elusive. (Miles 1991: 28)

Limited social mobility and relatively impermeable barriers between social classes are features of a rigid social hierarchy based on wealth, race, and familial connections. These anthropologists have shown that the disparate social classes are nearly endogamous in their marriage patterns and in transfer of wealth and land.

In the two decades that have passed since Miles’ definitive ethnography of

Cuenca, migration patterns have altered considerably (Miles 2000; Jokisch and Pribilsky

2002; Pribilsky 2007). It is common in the Azuay-Cañari region for households to have at least one family member in the United States or Spain. It is estimated that one in three households have at least one family member abroad (Borrero Vega and Vega Ugalde

1995), and recent studies have suggested that those figures may be even higher since

2007 (FLACSO Ecuador 2008). Migration has altered the balance of wealth in Cuenca and the surrounding provinces by increasing the amount of income in the hands of non- elites, or what Jokisch describes as “rural gentrification” (2002: 547). As evidenced by the explosion of internet cafés, international mail services and travel agents, it has

53 spawned changes in the retail sector as well. Someone who wishes to send the iconic

Ecuadorian delicacy, a cuy (a relative of the guinea pig), to their family members in

Spain or the United States can do so through one of many shipping services. Remittances have also altered housing development and ignited debates over cultural taste and propriety (Klaufus 2006). Many of these changes suggest that resources flowing in from abroad are beginning to chip away at the control that local elites have held continuously since Spanish colonization. During my fieldwork, however, I often came across the sentiment that while migration and national-level investments has affected the local social structure, the balance of power still remained entrenched within Cuenca’s elite families.

Cuenca meets a number of important criteria that made it an intriguing site for an ethnography of disability communities. First, it is an urban environment where architectural, social and physical barriers to accessibility are feasible to document and explore. The relatively compact layout of the city makes a range of different organizations reachable by public transportation; buses and taxis turned out to be key research sites. Cuenca is also city large enough to support diversity of disability organizations, social classes, and industries, but not as large or fragmented as in Quito or

Guayaquil. Second, with a citizenry that is relatively educated compared to other parts of

Ecuador, topics like disability awareness generate sufficient public debate. In smaller rural towns where disability is more covert, groups of disabled people have not reached the critical mass to make their issues recognized publicly. I felt that studying the topic in a more remote region would make the project overly intensive; instead, I wanted to zero

54 in on how individuals interact with disability institutions and experience urban space— only possible in a few regions in Ecuador. Moreover, preliminary research suggested that it was becoming a nascent node of disability rights efforts in Ecuador.

Local Hierarchies of Race and Class

In contrast to myths of racial democracy in Latin America, race continues to be a key “social fact” in Andean societies for reason that are not biological, but historical

(Weismantel and Eisenman 1998: 121). Various analysts have shown race, class, and geography are intertwined in the racial order and social systems in Ecuador (Wibbelsman

2003). In Ecuador’s racial imaginary, white and white-mestizos comprise the top of the racial order and economic ladder while blacks and indigenous groups make up the lower rungs (Rahier 1998). The myth of mestizaje, or the ideology that individuals that have

Spanish and indigenous ancestry, posits Ecuador as a nation of mixed-race citizens.

However, the notion of blanqueamiento (whitening) means that the mixing goes only one way – that Indians “whiten” themselves (Whitten 1981: 16); moreover, Afro-Ecuadorians have no place in such a scheme (Stutzman 1981; Rahier 1998).

Although it is closely linked with economic stratification, racial inequality has its own logic that can be traced to language, bodily practices, and hygienic boundaries among other indicators (Weismantel and Eisenman 1998). Ecuador’s ethnic makeup has been notoriously difficult to estimate, but government officials estimate that roughly one in three Ecuadorians can be identified as indigenous, and one in ten can claim African descent. The official counts for ethnicity present a rather confusing picture. Since

55 ethnicity was first measured in 2001 and depends on auto-identification, it overestimates categories that have been historically valorized and underestimates Afro-Ecuadorians and indigenous populations (INEC 2009: 127).

Racial geographies with long histories in Ecuador tend to associate rural areas and their inhabitants with inferiority. As other research has shown, I found that urban and rural distinctions remain highly salient. “Racial imaginaries” continue to link Indians to rural areas, and associate the countryside with what is backwards, uneducated and poor

(Radcliffe and Westwood 1996). Ethnographers of Cuenca describe how social stratification in Cuenca along lines of ancestry, race, and class has manifested in remarkably durable hierarchies (Brownrigg 1972; Hirschkind 1980). Although they attempt to shed markers of their background, those who migrate to Cuenca from rural areas often easily “type-cast” (Miles 2000: 60). Elites in Cuenca have a long tradition of romanticizing peasants living in the countryside in the region of Azuay, as well as those who make up a long-standing component of Cuenca’s population (Weismantel 2003).

Miles remarks that “the elites of the city (most of whom can trace their lineages back to the Spanish invaders of the valley) have always considered themselves urban city dwellers who have a gentlemanly respect for ‘their country folk’” (Miles 1994: 138). Part of the path to building social capital in Cuenca involves deemphasizing the rural origins of one’s family. In doing so, migrants to Cuenca try to figure out ways to show that they are “buena gente,” (literally good people) which signifies that they are educated and have connections to the right places.

Disabled Ecuadorians

Surveys from the national census have demonstrated that people with disabilities constitute a sizable share of Ecuadorians. One in eight Ecuadorians have some type of disability (Cazar Flores, et al. 2005). Of these 1.6 million citizens, forty percent have severe impairments. There are more women (52%) than men (48%) with disabilities. Just over half of people with disabilities live with their families, and one third requires the permanent assistance of a caregiver. Only one in ten people with disabilities receives any type of support from public or private institutions in Ecuador (Cazar Flores, et al. 2005:

111). In contrast, over half of Ecuadorians report that they receive social support from family members; one third of respondents receive some type of assistance from friends or co-workers. In addition to the epidemiological causes of disablement from low health provision and poverty, other causes of disablement include accidents from land mines, intoxication, vehicular accidents, and injuries sustained through labor in Ecuador’s extractive industries. Causes of disablement are discussed in more detail in chapter 3.

Lack of financial resources and intricate social networks make it more likely that disability will be managed through aid from family members or acquaintances than through expensive adaptive technology. In addition, just over half of Ecuador’s disabled population has finished elementary school, and less than twenty percent has had any high school education (estudios secundarios). The vast majority (84%) of those with some estudios secundarios live in urban areas like Cuenca. \

Disability is strongly linked with poverty in Ecuador. Half of all disabled

Ecuadorians fall into the bottom two income quintiles based on their monthly income,

57 which is less than $30/month. This figure is twenty percent higher than for non-disabled individuals with similar circumstances. For people facing the costs associated with impairment or chronic illness, living on one dollar per day is clearly insufficient.

Non-governmental assistance for disabled Ecuadorians

While the state has begun to provide service for households with disabled family members, non-governmental organizations (NGOs) and private entities have historically been the primary sources of financial support. A full account is beyond the scope of this project, but a wide array of specialized private, community, religious and international organizations provide aid to disabled individuals or families. CONADIS maintains a directory of many of these organizations. Public agencies that are involved in disability include regional commissions present in several provinces; local offices for ministries of health, education and culture, labor, and health; local schools that have special education programs; hospitals and clinics that often have specialties in rehabilitation (CONADIS

2011). The private sector includes foundations, corporate programs, and most importantly local manifestations of the Institute for Childhood and Families (El Instituto de la Niñez y la Familia, or INFA). INFA has specialized programs for children with disabilities located in the cities of Ibarra, Quito, Portoviejo, and Guayaquil. Several national level federations exist around particular impairments, including physical (FEDEDIF), auditory

(FENASEC), visual (FENCE), and cognitive/developmental disabilities (FEPAPDEM).

While I paid short visits to the headquarters of FEDEDIF and FENCE, I learned about these groups mostly through their local counterparts in Cuenca.

Within the province of Azuay, CONADIS identified at least 57 organizations

“working in the area of disability” in their national directory (CONADIS 2007). From

research in Azuay, I found that less than half those organizations appeared to be active.

Other agencies merely list an individual contact who may or may not have much

experience working with people with disabilities, such as staff from other government

agencies. But even counting the inactive and tangential entities working in this area, one

of the most formidable challenges arises from coordinating across a highly fragmented

sector.

Based on the CONADIS survey of disability conducted in 2004 (Cazar Flores, et

al. 2005), just under 98,000 people in Azuay have some type of disability.

Figure 5. People with disabilities and “limitations”

15% 14.6%

12.1% 12%

9% 6.8%

6% 4.8%

2.4% 3% 1.9%

0% Mild/Moderate Severe PwDs

Azuay Ecuador

The chart in figure 5 compares the proportions of people with disabilities and

“limitations” for the province of Azuay and for Ecuador as a whole (refer to chapter 1 for a definition of these terms). To reiterate, limitations and disabilities refer to different ways of measuring similar phenomenon. For example, a person with a facial disfigurement may consider themselves “disabled” but not having a limitation.

Conversely, a person with arthritis may indicate that they have a moderate limitation in activity with identifying themselves as a person with a disability. The overall rate of people with disabilities in Azuay (14.6%) is slightly greater than the national average.

The census also groups individuals into those with mild/moderate limitations and severe limitations. The figure for severe limitations, which is 6.8% in Azuay, is sometimes used by international entities for designating the rate of disability, rather than the figure for

“people with disabilities.12 Importantly, CONADIS (Cazar Flores, et al. 2005: 21) also reports the majority of people with “serious limitations” (74%) do not use any type of technical assistance, and only one in twenty are involved in a community organization of disabled people. These statistics suggest that most disabled Ecuadorians do not have adequate access to the financial and personal support necessary to address their requirements.

12 For a thorough discussion of the challenges in cross-country comparisons of rates of disability, see Elwan (1999) and Mont (2007).

Research Methods

I conducted ethnographic research for twelve months in 2008. Roughly ten months of this period was spent in Cuenca, with the remainder made up of visits to Quito,

Guayaquil, and other cities throughout Azuay. I also conducted a preliminary research trips in 2005 and 2006 and a return trip in 2010. I made use of three important methodological tools of sociocultural anthropology: participant-observation, interviews, and analysis of primary and secondary materials (government and NGO reports, newspapers, research studies).

Participant Groups

The majority of data collection occurred in social interactions with members of community organizations in Cuenca. Although I had visited Cuenca before, I had spent most of my time in Ecuador living with a family in Quito during preliminary research. I made my original contacts with key contacts in Cuenca mostly through serendipity and assistance from officials working for CONADIS primarily through two lucky events. The first event took place in midtown Quito where I was conducting an initial meeting with the public information officer at CONADIS headquarters. As I was explaining my interest in working with local leaders in Cuenca, the officer gave me a funny look and asked me to wait a moment. “You’re in luck,” she said returning to the office, “Señor

Fernando happens to be visiting Quito and in fact is sitting right down the hall.” I walked over to meet him. Fernando looked to be in his 40s, with short black hair and wearing a blue dress shirt with a black suit jacket. Though flustered, I managed to explain my

61 interests to Fernando. He agreed to meet me the following week in Cuenca. From internet research, I knew that Fernando was one of the few people with visual impairments to head regional offices of CONADIS and was well-known in the disabled community in

Azuay.

The second fortuitous moment took place in Cuenca the following week. By that time, the formal letter I had written to Fernando two weeks before had arrived. As I was waiting in the hall for our meeting, Fernando’s assistant read the letter to him aloud. He told me that he had been in Quito the whole week and just got back after the ten hour bus ride. A Cuban flag hanging down behind him that read Hasta La Victoria Siempre (ever onward to victory), a white cane, and computer with a screen reader were the few objects in his sparse office. After we chatted about CONADIS and my project, Fernando informed me that he had taken the liberty of inviting the leader of a local disability organization. Before I knew it, Estuardo had shown up sporting a sweatshirt over a collared shirt and a dark cap. Estuardo moved slowly with the aid of two walking canes.

Estuardo later become one of my key informants and was critical to my access to the disabled community in Cuenca.

I worked primarily with three groups in Cuenca. The first group is called the

Society for People with Disabilities (SPD).13 SPD is a nonprofit, non-governmental organization that was formed in 1985. The organization strives to offer rehabilitation services, promote labor market inclusion, and extend support for people with disabilities

13 The names of the main organizations I worked with are fictitious in order to protect the confidentiality of the research participants.

62 in the province of Azuay. It has roughly sixty active members from an overall membership of 450 individuals. The majority of the members have some type of physical disability, although there are people with auditory, intellectual, and visual disabilities.

Figure 6. Wheelchair racing during a party at SPD

Like many similar organizations in Ecuador, its governance is built around a group of rotating officers that occupy leadership positions. These include President, Vice-

President, Secretary, and a few others. It subsists financially on member dues (which are

$2/month), and receives no other ongoing financial support. However, in the last few years, it has received some assistance from the US-based office of Mobility International

(MIUSA), a nonprofit organization associated with USAID. MIUSA awarded SPD with funding to support a microenterprise project making textiles products for sporting

63 apparel.14 Figure 6 depicts SPD members participating in a wheelchair race during their annual holiday party that took place at their community center.

The Association of Novidentes of Azuay (ANA)15 was the second group I worked with in Cuenca. ANA is comprised of roughly forty people with low vision, partial sight, or complete blindness. It was founded in May 1965, and had been at its current location for about a decade.

Figure 7. ANA members conducting a simulation

14 See http://www.miusa.org/idd/inclusive-development-projects/ for more information. 15 The term novidentes refer to people who cannot see in some capacity. As I discuss in the next section, I decided to retain the Spanish term given that there is no obvious translation in English.

Figure 7 shows members of ANA allowing a local journalist to participate in a simulation of visual impairment by wearing a blindfold. ANA occasionally conducts exercises to generate public awareness about living with a visual impairment. ANA maintains an organizational structure similar to SPD with a rotating set of officers. According to organization leaders, it serves as an advocacy organization, a coordinating entity, and as a direct provider of services for people with visual disabilities. Presently, ANA has courses in special education, music, using “speaking software” and other technical aids, learning

Braille, and rehabilitation. Although members must be disabled people, they also serve students and family members.

Figure 8. Wheelchair basketball players

The third group of informants with whom I worked was a team of wheelchair athletes associated Club for Adaptive Athletics of Azuay. After a few months of attending SPD meetings, I was invited to observe a wheelchair practice by a friend, and subsequently visited the team on several occasions (see Figure 8). The wheelchair basketball players have been playing together for ten years or so. In addition to the four members of the team I interviewed, I had the opportunity to actually play basketball with them on five different occasions.

Ethics & Positionality

Fieldsite selection is a critical issue for anthropologists, often fraught with symbolic meaning and significance for the future. Perceptions of the validity and prestige accorded to particular types of fieldwork coalesce into a “hierarchy of purity,” that values research that takes place in locations traditionally considered exotic (Gupta and Ferguson

1997: 13). By virtue of its location, Cuenca lies within a traditional “hotspot” of anthropologists who have long been interested in peasant communities and indigenous groups throughout the Andean region in the remnants of the Incan Empire. As Gupta and

Ferguson explain, traditional “Malinowskian” research also tends to valorize long-term research with small-scale communities with groups that are considered culturally remote from the global North. Like many recent ethnographic studies, my project diverged from this traditional practice of the field; I was not setting out to study all aspects of social and cultural life in a rural town, or to focus on one of the Ecuador’s many indigenous groups.

However, I view the formation of disabled identity as a key site for engaging with

66 ongoing debates on migration, race, or household economics that have been traditionally studied in the Ecuadorian Andes. Although this is not an ethnographic re-study of life in

Cuenca, I engage with and update some of these ongoing intellectual debates. My continuing objective is to explore the everyday experience of disabled Ecuadorians as a window for linking marginalized subjects to broader economic and cultural forces.

Without a doubt, my positionality as a researcher played an important role in what type of data was collected as part of this study. First, my entry in the fieldsite was based on few social connections to existing organizations. This required me to approach research subjects and potential partner organizations through direct, unmediated contact.

In the early phase of fieldwork, I tried phone calls, formal letters, emails, and showing up at the doorstep of target organizations. Face-to-face interactions through showing up proved to be the most effective. The markers that positioned me as an American male researcher of European descent likely aided my entry into some organizations given the privileges accorded to similar individuals in Cuenca. Moreover, people perceived to be

American or European foreigners are accorded respect and assumed to have substantial resources. When I explained that my research was from a beca, or fellowship, that further solidified my dominant position. On the other hand, the conversations that I had with women with disabilities were possible only after firmly establishing rapport with community organizations in Cuenca.

Almost no one in Cuenca had ever heard of the Fulbright program. From the perspective of locals, it meant that I was becario (fellowship holder) based on some generic source of income from the US government. While I did meet some local

67 academics through Fulbright connections, I was wary of using those ties initially given the way that social connections operate. Rather, I tried to make direct contact with local disability organizations or through relationships generated during my first few months of residence in Cuenca.

Since I do not personally identify as a person with a disability, one barrier to working with Ecuadorians who do have disabilities was to prove that my interest was genuine. As I will discuss in later chapters, disability continues to be associated with shame in Ecuador making it a sensitive topic to discuss – especially with strangers. In the first phase of my fieldwork, I tried to be extremely patient in terms of building rapport and trust with members of the organizations I was working with. I also often discussed my history of working as a personal attendant and conducting research with people with disabilities in the United States. I explained that my original interest studying disability resulted from a job as an attendant for two adults in California that involved intimate personal care, and that led to a small ethnographic project on wheelchair users and independent living in Berkeley. People were often astonished to learn that I helped adult men with physical dystrophy to shower or use the restroom, and that I was paid for these services through the university. Depending on the context, I also explained how later research with mapping and accessibility conducted in both Los Angeles and Arizona had impacted my understanding of living with disabilities.

Given the ethical debates that surround disability research (Oliver 1992; Barnes

2003; Couser 2004), I decided to work closely with specific organizations rather than seek out unattached individuals, particularly in the early phase of research. With SPD, I

68 presented my ideas and research goals informally through meetings with the president and other organizational officers. Subsequently, I had to formally present to the group whereby I received approval through a vote by the majority of participants present at an asamblea. Following the initial introduction, I made appointments directly with people or through organizational leadership. With other organizations, I either was introduced through acquaintances or simply showed up and discussed the possibility of working together. In each interview, I took a formal approach to discussing informed consent by sharing disclaimer forms and explaining how Human Subjects Protection works in the

United States. Most participants found it surprising that such protocols were followed in scientific research; others weren’t terribly interested in such formalities. As suggested by

Couser (2004), the sensitive nature of writing about issues of people with physical impairments necessitates careful adherence to guidelines about participant consent and the publication of findings.

Since my research was conducted entirely in Spanish, the interpretation of my data was mediated through listening in Spanish, recording, translating, and representing the work for English-speaking audiences. In many cases, I have left phrases or words in

Spanish that are more difficult to translate or narrated my interpretation of events where unmediated descriptions would lack sufficient context to make sense. While my goal was not achieve any type of “insider status,” I view my ongoing engagement as a dynamic process that affected the nature of what data I collected (Labaree 2002). While I can never fully understand all of the cultural meanings attached to being Ecuadorian, I did have domains of shared knowledge with my informants. In certain areas – for example,

69 cognizance of personal care for people with impairments or bodily knowledge as basketball player – I may have more in common with my informants that would a typical non-disabled Ecuadorian. Demonstrating knowledge about the challenges in caring for family members with disabilities by past experience proved to be important in gaining the trust of many interviewees.

In addition to common obstacles faced by anthropologists conducting research in locations where they are not native speakers, another challenge arises for researchers interested in giving back or practicing “engaged anthropology.” I was interested in selecting a field site that offered the opportunity to be directly engaged with ongoing political work in the disabled community, rather than merely as a repository of individuals from whom I would collect data. In rejecting the quest for universal truths,

Gupta and Ferguson suggest that ethnography can also be “a way of pursuing specific political aims while simultaneously seeking lines of common political purpose with allies who stand elsewhere” (1997: 38). In working with organizations in Cuenca, my approach to collecting data was intertwined with technical assistance and participation in their local political activism. At the same time, I tried to be highly conscious of danger inherent in

“engaged” research: the way that my work may affect community members, which discourses might be silenced or promoted through my participation, and what hidden agendas could be at play within the community (Nichter 2006: 345). For instance, I tried to be aware of how my involvement could affect the alliances and tensions between the various disabled community organizations that in some respects were competing against each other for scarce resources.

As a way to build trust and goodwill, from the first few meeting with ANA and

SPD I discussed with their leaders how I might help them with technical assistance.

Although I later realized that these groups would have likely worked with me anyway, I felt obliged to find ways to assist these organizations in fulfilling their organizational mission. I eventually assisted both groups with creating an organizational website, which included content development, web page production, and securing domain names. I also assisted SPD as a trainer when they initiated computer workshops. By the time my fieldwork was nearly complete, we had development a “Memorandum of Understanding” between SPD and the Disability Resource Center at the University of Arizona to work toward some type of cultural exchange program. While the websites and other activities were worthwhile activities, it was tempting to overpromise what could be accomplished in a short time or in subsequent fieldwork.

Labeling Disability

The variety of terms used for disability and bodily differences play an important role in how people define themselves in Cuenca. Although I had first assumed that the terminologies in use at the community organizations were more or less agreed upon, it later become clear that how language was deployed was an active area of contention.

Members understood that while they may have reservations about using particular terms, rallying around common terms that describe the group had strategic importance. Personal discomfort with the negative meaning implied by the etymology of discapacidad was less important than the value of solidarity around a common identity.

The labels adopted by individuals vary widely, and those espoused publicly may differ from those shared in private – as Das and Addlakha (2001) suggest, the manner in which disability is enacted is crucial. Secondly, the breadth of the social category of personas con discapacidad, with its recent construction, is fragile. Political solidarity around the notion of discapacidad, especially for people not traditionally designated as physically disabled, is precarious at best.

Table 1. Terms for Disability

Disability (general) Physical Disability Visual Disabilities

Preferred or persona especial (special Personas con discapacidad Novidentes (blind) standard terms person) (person with a disability) Ciegos (blind). persona con capacidades discapacitados (disabled) Discapacidad diferentes físicos (people with visual (visual (person with different physical disabilities) disability), capacities), visión disminuida niños con necesidades (impaired vision), especiales ceguera (blindness) (children with special needs) Colloquial or discapacitado (disabled) discapacitados (disabled) ciegos, Common minusválidos (handicapped) físicos (people with novidentes, physical disabilities) invidentes (same as novidente)

Derogatory persona que no habla/ cojito (lame) Persona que no ve escucha mal hecho (poorly made), (person who cannot (person who cannot manco (one-armed or one- see) speak/hear) handed), inválidos (invalids), pato de palo (peg leg), minusválidos (handicapped) torciditos (crooked) pobrecito (poor thing), lisiado (crippled) enfermito (sick) lento (slow)

Althusser’s notion of interpellation reminds us that people react to the intersubjective process of “hailing” enacted through terms such as “discapacidad” (1971:

163). The concept of interpellation connects labeling with a sense of self. One of the

72 ways we can see how recently discapacidad has emerged in Ecuador is through tracking the ways that people self-identify and label others. Table 1 describes the most common terms for disability I encountered. For heuristic purposes, the rows divide terms into standard or preferred, colloquial, and derogatory terms. The first column indicates terms for disability in general, and the other two columns address physical and visual impairments.

These labels signify the ambiguous meanings of bodily and behavioral differences in ways that have changed over time. Several labels were elicited through interviews as I asked about what terms are used to describe members of the organizations, people with disabilities, or interviewees themselves. These were not asked in a uniform way; at times, people focused on “official” or “politically correct” labels thought to be promoted by the organization or more broadly by state institutions. In other cases, respondents began by discussing historical terms that were often derogatory, and then explaining that in contemporary Cuenca, more appropriate terms were in circulation.

Although they would not use the term, a sort of “crip politics” (Russell 1998;

McRuer 2006) is at play as disabled people take ownership of language used to describe their community. Terms considered derogatory when used by non-disabled people can be a source of humor, pride or indicate insider status (Gilson and Depoy 2000: 212); the meaning derives from the positionality of the speaker. However, I cannot stress enough how terms like mal hecho (poorly made) had made people I spoke with feel demeaning and less than human. Needless to say, the people who use derogatory language do so in highly circumscribed situations – mostly with others that share the same type of

73 impairment. An example would be joking about “peg-legs” among several people with prosthetic limbs.

The former president of SPD, Estuardo, talked about the distinctions between labels in the context of who the organization purported to serve. Estuardo suggested that while SPD would “be delighted to have more people with intellectual disabilities,” they have particular needs that are hard to meet. Similarly, he pointed out that it would be preferable to have interpreters or those who could read lips so that “we could learn new things, and so they could learn our customs [costumbres], skills, and abilities that we share.” In this and other conversations, Estuardo’s sentiment emphasizes both shared and divergent sets of values. When I asked more specifically about terms, Estuardo explained that minusválido (handicap) and inválido (invalid) both signified something pitiful or pathetic, which is exactly the message SPD tries to avoid. But discussing terms like special abilities is more appropriate:

Sure, maybe we cannot climb a mountain, maybe we cannot play squash, but we can produce handicrafts while sitting in chair, for example I can design clothes … we are not invalids – we are not going to fly a rocket to the moon but we can sit at a computer and offer basic services.

Terms like deficiencia (impairment) signify something is lacking, or less than average.

For that reason, Estuardo explained that he preferred to use the notion of capacidades especiales (special abilities) when referring to himself.

Technical ways of dealing with disablement do not match meanings of disability that persist through everyday speech in Ecuador. A man with mechanical pincers in place of hands named Joaquín compared the medical approach to impairment to the use of the word manco, which means one-armed in Spanish but also has the connotation of being

74 maimed. Joaquín allowed his friends call him manco, but would object to a random stranger using the term in the street. Yet terms like manco or pato de palo (wooden or peg-leg) were often used in colloquial conversation by non-disabled people, rather the terms preferred by SPD such as persona con discapacidad, terms that Joaquín called

“less hurtful.”

A subset of SPD members displayed an interest in moving beyond a personal preference for the capacidades especiales by changing the organization’s name. The issue arose during one of SPD’s monthly meetings, when a young man whom others had identified as a person with a development disability waved his hand so that the president would acknowledge him. After he was recognized, he asked, “When are we going to consider changing our name? As I’ve said many times before, I think we should change our name to the Association of People with Different Capacities16 (capacidades diferentes).” While there were a few murmurs of support, for the most part his claim was ignored. In reflecting with organizational leaders about this incident, I learned that most people were not in favor of that type of name change and preferred to use the terminology of discapacidad for strategic purposes.

I also encountered instances where use of particular term, either by me during an interview or by a third person, caused vehement reactions. The least amount of agreement occurred in speaking with members of ANA. While most were comfortable with the terms novidente, several people objected to the use of the term discapacidad visual

16 The phrase capacidades diferentes could also translated as “differently-abled” or “different capabilities.”

(visual disability). Most were also comfortable with ciego (blind), since it was seen as descriptive and mostly neutral. However, one the younger members of ANA prefers the term “visual impairment.” For Elena, 23, ciego doesn’t sound right: “I don’t like using the term ‘blind’ – it’s too strong and feels stigmatizing.” She likewise preferred not use words like handicap or disability since for her they suggested a sense of inferiority.

Deciding how to talk about disability can be seen as a form of gatekeeping. I discuss in chapter 6 how the meanings of these terms play a role in how hierarchies of impairment groups are constructed in Cuenca.

Participant Observation

One of the primary means of data collection I relied on was direct participant- observation with disabled people in Cuenca. This approach builds on a small corpus of ethnographies that study disability through close observation and daily living (Zola

1982a; Murphy 1987; Frank 2000). Like these ethnographers, I spent time with individuals with physical, intellectual, and visual disabilities during their daily routine.

The activities I participated in varied from more formal events like organizational meetings and political rallies to less formal activities such as an annual trip to the beach and athletic practices. After a few months getting to know to people on a personal level, these activities became the most important source of understanding the quotidian aspects of disability in Cuenca.

As my fieldwork progressed, I was increasingly invited into people’s homes, whether it was to offer help with their internet connection, work on a house project, or

76 share a meal. In a similar way, receiving tours of institutions helped me gain a sense of the environment in which people were working and living. Tours of schools for students with disabilities demonstrated how social inclusion functioned in educational settings. It was much easier to appreciate accessibility and lifestyle challenges through visits to homes and workplaces. This type of involvement helped illuminate the challenges that people encounter in their everyday lives.

Another strategy for collecting data and widening my network of informants stemmed from more structured observation (Bernard 1994: 137). By this, I mean repeatedly spending time in particular sites without having a pre-specified goal. For example, hanging out in the central plaza in Cuenca at different times of the day provided the opportunity to see a range of social interactions, including street vending, using the bus, navigating sidewalks, and panhandling. Frequently, I was able to engage in impromptu conversations (that sometimes led to subsequent interviews). More than once,

I stumbled upon events that in retrospect were key ethnographic scenes, sometimes in a rapid fire sequence. For instance, on one day in October three events occurred in succession within the same city block: within a single hour I ran into a group of disabled

German tourists, came upon an interview with a local disability rights leader that was being conducted on the street by a local journalist, and spoke with a lottery vendor I had been trying to meet.

Reflective accounts of fieldwork often emphasize the unpredictability of one’s project, and mine was no exception. In my case, I had planned to try to spend time as a personal assistant by offering volunteer service to individuals with disabilities as I had in

77 the past in the United States. However, the model of service delivery where disabled people employ non-family members is relatively uncommon in Ecuador, and even then, the level of trust it requires was unrealistic to expect for an outsider like myself.

Moreover, only wealthy families can afford that level of service. Although working as personal assistant did not happen formally, it occurred more naturally through spending a lot of time with my informants (see chapter 5 more a detailed description of my involvement on SPD’s annual, four-day trip to the Ecuadorian coast).

My participation in wheelchair basketball practices was likewise serendipitous.

After hearing about the existence of a group of basketball players, I was finally invited to come and watch a practice. When I showed up for the first time (after not being able to meet up in two other occasions), I assisted first with preparing the court for practice and helping people get their wheelchairs out of their vehicles. However, they were short a player and immediately invited me to play. Overcoming my initial hesitation – this seemed to violate a number of my assumptions about who plays, etiquette for adaptive athletics, etc.– I ended up playing with the team in several occasions and thereby participating in a meaningful way. Playing basketball in a wheelchair with experienced players proved to be a powerful form of participant observation (see chapter 5 and 6).

Throughout my fieldwork, I was also interested in the mutual exchange of knowledge and skills. Beyond data collection, my formal involvement with disability organizations included offering technical and research assistance. I created an organizational website with both representatives from both ANA and SPD. Although it might seem like a fairly technical process, the website development and planning forced

78 each group to consider their mission, history, and public in a manner that presented me with insight into the emic meanings that they attach to accessibility and inclusion.

Enlisting willing participants and creating a process for designing and maintaining the websites brought me into closer contact with organizational leadership, often through meetings in their homes. Working on websites or other project became effective techniques for extending participant observation.

Another role I played during fieldwork entailed taking pictures as the unofficial photographer. The SPD officers requested that as part of my involvement with the organization, I should take as many photographs as possible for inclusion in the new organizations website and for archival purposes. The president announced to the group that I would act as SPD’s photographer during 2008, and explained how the images would be used both for the website and for my research. Although this appeared to give me blanket approval to take pictures, I tried to confirm with those in the photos whether or not they wanted to have their images made public when distributing print copies of the digital photos. For the photos included in this dissertation, oral consent was given in the case where individuals are clearly recognizable.

Interviews and Sample

The second key method of collecting qualitative data was through interviews with disabled and non-disabled Ecuadorians. The majority of these interviews took place in

Cuenca with people with physical and visual disabilities. The interviews were mostly semi-structured in format, and usually lasted between 45-90 minutes. In some cases,

79 repeated natural conversations with selected informants led to sessions that approximated life history interviews. Other meetings had a more open-ended nature and occurred spontaneously at monthly meetings or in the course of social activities such as political rallies, recreational trips, or monthly gatherings (asambleas). I attempted to interview people according to a rough sampling frame that balanced age, gender, and type of disability. Although a majority of interviews took place at either SPD or ANA, they also took place at the interviewees’ home, near the basketball court, at cafés, in a park, and in one unusual case, inside someone’s car.

Typically, I would cover a series of topics in any given interview. Each interview was preceded by a discussion of the research, the human subjects consenting process, and a short questionnaire that queried demographic information such as age, hometown, current, residence, profession, education, and information about disability/impairment.

Both the interview guide and questionnaire were revised after a short test period in the first two months of fieldwork. At a minimum, the topics addressed in semi-structured interviews included experiences with barriers (social, architectural, transportation, psychological), accessibility, family dynamics, community involvement and basic life histories. While snowball sampling was used to recruit additional participants, in the later stage purposive sampling aided by organizational contacts helped to ensure a diverse set of informants. In about half of the interviews, I spoke with the interviewee more informally at least two other times.

Of the people I interviewed, 46 sessions were audio-taped and transcribed for analysis. Key characteristics of the sample are listed in Table 2. In the sample, the ages

80 ranged from 22 to 72, with a median age of 42 years old; nearly two-thirds were over the age of 36. The sample was forty-six percent female and fifty-four percent male. Although women make up a higher percentage of people with disabilities, they are more likely to have restricted mobility outside of their homes. I attempted to balance the sample as much as possible.

Table 2. Key Characteristics of Study Sample Percentage of Total

Under 35 28%

Age 30-45 35%

Over 45 37%

Female 46% Gender Male 54%

Physical/Mobility 41%

Impairment Visual Impairment 26%

Non-disabled or other 33%

Single 40%

Married 33%

Relationship status Divorced/separated 15%

“living together” 4%

Nineteen individuals identified as people with physical or mobility impairments; whereas twelve indicated visual impairments (one person indicated “intellectual disability”). Of the informants who resided in Cuenca, two in three indicated that they

81 were born in the province of Azuay. However, interviews indicated that around half were not born in Cuenca, but had migrated either from other parts of Ecuador or smaller towns in Azuay.

In terms of education, two of the participants with physically disabilities had university educations. The majority has completed primary school or secondary school

(secundaría básica) but not beyond. However, one third of people with visual disabilities had earned university degrees while the rest had either finished primary school or the equivalent of ninth grade of secondary education. One third indicated that they were married, whereas 40% indicated single. Fifteen percent were divorced and separated, and two people indicated “living together” (comprometido/unión libre). The most common responses to “¿a qué se dedica?” (“what do you do?”) were “retired” or “volunteer.”

Other professions or statuses indicated included lottery vendor, fast food employee, factory worker, housewife, student, librarian, musician, and artisan. In addition to individuals that identified as people with disabilities, I formally interviewed twelve non- disabled Ecuadorians in an effort to better understand public perceptions of disability.

These included parents of children with a disability, staff at local non-profit disability organizations and schools, and teachers.

Apart from focused interviewing in Cuenca, other meetings were conducted in

Quito, Guayaquil, and selected locations throughout Ecuador to establish a basis for comparison with a core set of data. These included interviews with staff from CONADIS, medical anthropologists, professionals who work with people with physical disabilities, and representatives from disability advocacy groups. The data that I gathered through

82 fieldnotes and interviews was supplemented by newspaper articles, which I read daily throughout the project, and collection of secondary archival materials in Cuenca and

Quito. These secondary documents are outlined in Table 3 below, and include pamphlets and posters, photographs, newsletters, and statistical data.

Table 3. Selected List of secondary sources Category Source

Government Ministerio de Inclusión Económica y Social organizations Consejo Nacional de Discapacidades (CONADIS) Instituto Nacional de Estadísticas y Censos (INEC) Sistema Integrado de Indicadores Sociales del Ecuador (SIISE) International USAID organizations Rehabilitation International Mobility International World Health Organization (World Report on Disability World Bank (Disability and Development Team; Disability in Latin America and Caribbean Region) Non-governmental Fundación ecuatoriana de asistencia sicopedagógica para organizations personas con retardo mental (FASINARM) Federación Nacional de Ecuatorianos con Discapacidad Física (FENEDIF) Federación Nacional de Ciegos del Ecuador (FENCE) Academic Universidad de Cuenca Universidad de Azuay Facultad Latinoamericana de Ciencias Sociales – Quito (FLACSO) Universidad de San Francisco, Quito Media (periodicals) El Tiempo (Cuenca) El Mercurio (Cuenca) Hoy Revista Vistazo El Universo El Comercio

As is increasingly common for anthropologists, I remained in contact with several key informants in Cuenca in the period since conducting fieldwork. A follow-up research

83 trip in 2010 helped reestablish ties with members of ANA, SPD, and one wheelchair basketball player in particular. Several of the individuals I interviewed subsequently acquired email and social networking accounts which helped in maintaining regular communication.

Data analysis

Upon returning from the field, I spent several months analyzing data collected from interviews, fieldnotes, and selected secondary sources. The first steps involved entering demographic data into a spreadsheet database, listening and logging interviews, and completing transcriptions for recorded interviews. To ensure confidentiality for my informants, pseudonyms drawn from local newspaper articles were created for participants. Interview and fieldnotes were saved with ID numbers associated with pseudonyms. During the second stage, I coded material stored in the qualitative data analysis “Atlas-ti” software and wrote analytical memos that addressed emergent themes within the basic approach of “whole-text inductive analysis” (Ryan and Bernard 2001:

274). Subsequent iterations greatly reduced the number of codes. The third stage of analysis entailed identifying recurrent themes and careful re-coding of interview transcripts according to the smaller set of code categories. I also wrote integrative memos as a method for making sense of the data from a bottom-up approach (Emerson et al.

1995: 162).

As part of the data collection and analysis process, I attempted to triangulate my findings as much as possible. During fieldwork, I consulted with a local anthropologist

84 who has been living in the region for decades. I also discussed some of my findings with key informants to better understand context and ensure that I was correctly interpreting particular information. Newspapers, government reports, and other secondary materials were also helpful sources to validate data collected on the ground. Nevertheless, I acknowledge that my role as a “friendly foreigner” limited my ability to know which questions were the correct ones to ask as well as how to ask them (Briggs 1986). For instance, at times the fairly “direct” questioning that occurs during semi-structured interviews often led to ambiguous answers that were not entirely useful in the early stages of my fieldwork. The tendency of Ecuadorians to avoid saying “No” or giving negative answers had to be taken into account. While my understanding of the everyday in Cuenca improved through multiple visits and sustained attempts at participation, I realize that further insights into cultural life in Cuenca will require long-term engagement.

During the data analysis phase of research, I was struck by the importance of narrative structure within the interviews, or what medical anthropologists often term

“illness narratives” (Mattingly and Garro 2000). In addition to verbal elements, illness or disability narratives entail a complementary set of stories is often told by informants through embodied performance (Antelius 2009; Hyden and Antelius 2011). Often during interviews, my informants demonstrated the severity or nature of their impairment through gestures or movement. I tried to capture these performances through writing extensive field notes as much as possible, both after interviews and following daily events. Informants also likened the process of interviewing with me to Catholic confession, which I imagine structured the way that they revealed difficult topics. The

85 interviews opened a space to tell stories that were infrequently shared. In several cases, the interviews led to extensive weeping and long pauses necessary for interviewees to regain composure. Another factor was my position as an ostensibly wealthy and mobile citizen of the United States. I came to see how some of the themes discussed related more to my position as researcher than as independent data, such as the notion that rich countries should help countries like Ecuador with social spending on issues like disability.

Conclusions

This research was conducted primarily with community-based organizations in

Cuenca, a city in the southern highlands of Ecuador known for a legacy of entrenched social hierarchies, a recent history of out migration, and a significant network of institutions focused on serving people with disabilities. I also discussed the particular challenges stemming from my positionality as a researcher, ethical and methodological considerations of working with disabled communities, and reflections on engaged anthropology. Although measurement of the incidence of disability are subject to debate, government surveys estimate that one in seven residents of the Azuay province have some type of disability, an slightly higher than Ecuador as a whole. In the next chapter, I closely examine an aspect of research on disability that is often overlooked: structural violence and related causes of disablement.

CHAPTER 3 – HISTORICAL CONTEXTS: THE PRODUCTION OF DISABLEMENT

From Mining Accident to Wheelchair Basketball

When Francisco started playing wheelchair basketball, he had no idea what to expect. While he had attempted to join a local community organization for people with physical disabilities, he found that their approach didn’t really meet his needs.

Francisco’s experience in learning to play wheelchair basketball after suffering a severe accident made him unusual. Unlike most Ecuadorians with acquired injuries, he was able to raise enough money to pay for an operation, secure a wheelchair and learn to use it, and eventually find employment. Yet even accounting for Francisco’s success, when I spoke with him in 2008, he felt “extremely lucky” to be working eleven hour days in a local factory.

I met Francisco in the course of spending time with wheelchair basketball players in Cuenca. Unlike many of the basketball players, Francisco was fairly low-key and shy with his teammates. However, he agreed to speak with me about his story after hearing that I was setting up appointments for chats or interviews. Francisco’s story offers a human face to the statistics that track disabilities caused by accidents. His journey from mine worker to wheelchair basketball player helps illustrate an important point about how the cause of disablement can be delinked from the consequences. In Francisco’s case, his lack of social protection as a low-wage miner meant that his household bore the costs of

87 his injury.17 Although he benefited from new government policies around hiring disabled workers, his rehabilitation and recovery from injury took place without public assistance.

Francisco insisted that we meet at my apartment in Cuenca. To exit his car, he had to recline backwards in his seat and hoist his wheelchair from the backseat to the street.

While it seemed acrobatic to me, the maneuver was routine for him. As we sat down on the couch, Francisco remarked that my place was pretty accessible for Cuenca. After having some beer and plantain chips, we began speaking about how he came to live in

Cuenca and play wheelchair basketball.

Francisco was unmarried, 30 years old and from the province of Morono

Santiago. Most of his family still lived near the town of Macas, making him from the campo (countryside). However, he had lived in Cuenca for many years. Francisco described to me precisely the process by which he became injured and ended up becoming a wheelchair user. He was working as a miner in a rural province of coastal

Ecuador when an accident occurred. His team was drilling for “a vein of gold” with a massive drill when they took a break. Francisco described the nature and consequences of his accident:

I put a couple of larger stones on top and was just sitting there reading the newspaper when a large slab fell from the roof. I heard that vibration of the machine as it was moving then suddenly there was an impact – they told me it was more or less two and half tons that pressed into my legs … then I didn’t feel anything -- it was brutal. It was five in the morning when then they took me on a mattress in the back of a pickup truck for the two hour ride back to [coastal city of] Machala where I spent two hours in a clinic.

17 Eighty-four percent of disabled Ecuadorians lack health insurance (Inter-American Development Bank 2006).

I was alone there for quite some time, since I went with an uncle who went on vacation and left me there. Nobody there knew me, but I was hoping that they would operate on me quickly since it hurt badly and thought that they would be able to do an operation and then I’d be able to walk again within eight days. But the doctors had one authorization after another, and I didn’t want to tell my family. So a few days passed, and then they basically forced me to tell my family. The doctors told my family that the operation was dangerous – not too dangerous but that they couldn’t guarantee anything – I may or may not be able to walk again.

From that point, Francisco narrated how the shame and depression he experienced prevented him from telling his family. After a few days, the doctors forced him to call his aunt. The doctors in Machala told them that they could operate for thirty million sucres (around USD $8500 at the time). Since his extended family lived in Cuenca, two weeks later they brought him to a local clinic. However, the doctors in Cuenca gave him a more realistic assessment:

But here when I told them about my situation, they said that I would never walk again and that I would have to search for work in a wheelchair. That was the last straw – imagine that you can’t take care of yourself but instead have to spend your life depending on others. It killed me to hear this, I literally wanted to die for about three or four months while I was disappointed and confused about what I should do. But, with the considerable help of my family and my brother, little by little I was able to overcome until now where I am today. I am as I am, thanks to the Lord, things have been alright and that which I wanted, I have had.

I didn’t want to know anything, I wanted to disappear for a year – well, the first three months were the worst, but then I began to adapt because it was a whole new way of living – it was totally different to depend on the wheelchair, to depend on others. I spent each and every day for a while learning how to move again.

Francisco’s response to a debilitating injury involved shock and despair, but eventually a sense of acceptance of a new set of life expectations. As in many narratives from those who acquire disabilities, there is a trajectory that starts with life before the accident, a

89 period of liminality that includes the fear of an existence consisting of dependence on others, and a resolution that entails a transformed sense of self (Murphy 1987; Antelius

2009). Following his move to Cuenca, Francisco gradually created what he considered to be an independent life. The most positive event involved joining the wheelchair basketball team as it was the “best form of therapy,” as it combines physical and psychological rehabilitation, or what I discuss in chapter 7 as a process of rehabituation

(Manderson 2011: 96).

In addition, Francisco was one of the few disabled people I met in Cuenca who had formal employment. For the last six years, he had worked as a skilled laborer in a factory that makes parts for consumer products like refrigerators – from seven in the morning to six at night. Hired as part of the firm’s compliance with a recent law that requires any business with over twenty-five employees to have at least one disabled employee, Francisco felt fortunate to have a steady job.

Stepping back, Francisco’s case demonstrates a number of important themes.

First, he was previously connected to the transnational mining industry which has been growing as an economic sector in Ecuador in recent decades. When he became injured, he was considered unemployable. The financial burden of medical operations and recovery was born by his family, not the state or the mining company. Livingston describes a similar dynamic in Botswana, where “the mining industry had treated African workers as disposable, drawing in the able-bodied and farming the damaged back out to the rural communities from which they had come” (2006: 111). A large surplus of workers waiting for jobs made it unnecessary to the mine owners to concern themselves

90 with the cost of injured employees. In prior eras, he would likely have had no chance to work again, and perhaps would be permanently a non-productive body (Mitchell and

Snyder 2010). Yet in Cuenca he has moved into a factory job. Although he admitted feeling like a token worker employed to fit a quota and avoid a tax liability, he also felt relieved to be working again and to be living a more or less independent life.

Like many others I met during fieldwork, several factors propelled Francisco to relocate to Cuenca. Medical services, social supports, more accessible physical environments, and more open attitudes toward disability encountered in the urban space in Cuenca created opportunities that would have been unavailable in his hometown.

However, the way in which he navigated various barriers to creating an independent life for himself made him stand out from those in similar circumstances. For the vast majority of Ecuadorians that acquire or live with severe disabilities, the costs of care include social exclusion and conditions of poverty. Francisco was seen by many of his peers as one of the “lucky ones” (c.f. Livingston 2006: 112).

In this chapter, I locate the struggles of disabled citizens within broader economic and political restructuring that has taken place in Ecuador in recent decades. I embed the stories of two people I met in Cuenca within conditions of structural violence and legacies of social suffering in southern Ecuador. I argue that the causes of disablement – such as poor health conditions, accidents incurred through labor in the context of weak environmental safety – are typically separated conceptually from the consequences of disabling events. While valuable in capturing snapshot of social conditions, disability statistics reinforce ahistorical views on investigating disability. By tracing how a man

91 with paralysis from a brain tumor has fared in the last three decades, I show how more explicit forms of spatial exclusion have given way to new opportunities for social participation. Yet as fewer people remain sequestered in their homes, other forms of warehousing have arisen especially for families unable to shoulder the burden of care.

Weaving ethnographic data into discussions about the political economy of disability offers a way to link the causes and consequences of disability, a task which is often obscured by statistics and other synchronic means of interpreting social conditions. I discuss how in the absence of state resources, families and various community organizations (NGOs, private foundations, etc.) pay the costs of disability. Within limited social spending on issues of health and education in Ecuador, attention toward disability has mostly been focused on the prevention of disablement and legislative changes such as preferential hiring and anti-discrimination measures.

While Ecuadorians with disabilities are living through a period of political transformation with regard to the role of the state, many of the cultural and economic forces that shape their life chances continue to produce limited options for advancement.

Broader forces that structure opportunity and render particular Ecuadorians relatively valueless in the wider economy contribute greatly to the ability for disabled people to survive or advance socially. Without locating narratives about disability in a broader context, it might be tempting to explain processes of disablement as primarily due to psychological factors such as stigma or internal oppression, or as the inevitable cause of poverty in the developing world. Rather, I demonstrate how these factors place local

92 debates around the marginalization of disabled communities within wider negotiations of meaning and power (Tsing 1994: 9).

Historical Approaches to Conceptualizing Bodily and Behavioral Differences

With a few exceptions, Ecuadorians with bodily differences were not systematically sequestered in medical facilities as in many Western nations. Although there are some examples of hospicios (mental hospitals) catering to the mentally ill in large urban centers (Sánchez Gambóa 1997; Landázuri Camacho 2008), disability has historically been managed at the household level.18 This is in accordance with a sociocentric model of personhood where family relations are paramount and disability is subsumed within the household (Ingstad and Whyte 1995; Inhorn and Bharadwaj 2007).

Torres Dávila (2004) notes that in Quito households, mothers and other females shoulder the primary burden in caring for disabled family members.

18 The limited historical material suggests that social valuation of disability has fluctuated considerably over time. The relatively high level of respect accorded to people with bodily differences (and elders) during the Incan epoch was replaced by more exclusive practices in the colonial and post-colonial period. Although studies of the “everyday life” of the Incas and the indigenous groups that they conquered are limited (Malpass 1996: 35), the treatment of older and disabled members of their society tended toward an inclusive approach (Kendall 1973: 90-91). People with bodily differences performed tasks appropriate for their impairment, and received food and clothing. However, particular regulations stipulated that people of the same impairment– e.g. blind, little people, deaf – could not marry people outside of their group. Kendall (1973) explains that the 17th century historian Cobo wrote that the status of disabled people under Spanish rule likely was worse: begging and stigma was more common than during the period of Inca rule.

Prior to the emergence of state attempts to govern disability and the promotion of political rights, discrimination against people considered to be disabled was legal in

Ecuador. Along with a number of other Latin American countries, Ecuador banned people with mental impairments, “chronic impotence,” and “dipsomania” (chronic drunkenness) from marriage (IDRM 2004). Around the turn of the 20th century, policy toward disabled people in Ecuador mirrored the eugenic tendencies that were pervasive throughout Europe and the Americas (Wullen 1937). Scholars have also shown how the existing systems of inequality created the opportunity to articulate particular constructions of disability. Borchart de Moreno (2001) draws attention to colonial Quito where the supposed association of imbecilidad (imbecility or idiocy) with femininity was used to prevent women from participating local economies. Around the turn of the eighteenth century Quiteños drew on discourses common in Europe that asserted male superiority in part through linking femininity with flawed moral character, passivity, and debilities.19 Disability has been deployed as a justification for inequality or the basis for denying entry to immigrants (Molina 2006). For instance, Baynton (2001: 33) argues that disability played a key role in the major historical debates around citizenship in the

United States including civil rights for African-Americans, women’s suffrage, and immigration. Arguments both in favor and in opposition to increased citizenship rights

19 Clark (2001) demonstrates how the Ecuadorian state later became interested in protecting pregnant women and children as a public health issue in the early 20th century. With growing concern over increasing the labor force, promoting social reproduction became a vital site of state intervention.

94 drew on debates about whether these groups had moral, psychological, or physical flaws or deficiencies as justification for their social position.

Structural Violence and Social Suffering

The advent of statistics about disability, such those outlined below, signals an increased interest in understanding the scope and nature of issues for people with disabilities in Ecuador. At the same time, statistical reports on disability have only been collected twice in Ecuadorian history (1996 and 2004). Disabled people have only recently precariously moved from a category of “people whom the state hardly thinks worth counting at all” (Scheper-Hughes 1992: 30) to a population whose welfare has become a public concern. Statistical measures play an important role in providing evidence that can be used as the basis for entitlement claims and public policies geared toward Ecuador’s disabled population.

According to a government survey conducted in 2004, approximately 50,000

Ecuadorians have acquired disabilities through accidents (Cazar Flores, et al. 2005: 44).

Table 4 below describes the causes of severe disability in the province of Azuay and

Ecuador. Health conditions make up the most frequent cause of disability in Ecuador.

These conditions include acquired and hereditary diseases, birth-related disabilities, infections, and inadequate health practices (Cazar Flores, et al. 2005: 20).20 These same

20 The report “Ecuador: La Discapacidad en Cifras” that describes the survey results does not offer precise definitions for causes of disability, including “adverse conditions” or “violence.”

95 conditions are the primary cause of disability for eighty percent of children under five years of age, and is even higher in rural areas (91%) (Cazar Flores, et al. 2005: 18).

Table 4: Population with severe disability over 5 years of age, by cause (2005) Azuay Ecuador Health conditions 70.4% 64.9% Accidents 16.4% 17.7% Adverse Conditions 2.2% 2.3% Violence 2.9% 1.4% Intoxications 0.9% 1.9% Other Causes 7.2% 12.6%

The anthropological concept of structural violence (Scheper-Hughes 1992;

Bourgois 1995; Farmer 2004) offers a framework for understanding how particular systemic issues such as poor health care, poverty, and skewed access to basic resources and rights lead to negative quality of life outcomes. Johan Galtung (1969; 1975) first introduced the notion of structural violence in the context of his writing on peace research.21 Among anthropologists, Paul Farmer has consistently employed structural violence to help explain the devastating effects of AIDS and tuberculosis in Haiti. For

Farmer, structural violence helps explain “the social machinery of oppression,” especially those conditions that are often argued away as “nobody’s fault” (2004: 307). Structural

21 Galtung defined peace as the absence of violence, and attempted to describe and classify types of violence, employing six different “dimensions.” The first dimension, which distinguishes between physical and psychological violence, also differentiates “biological violence” (i.e. somatic: torture, malnutrition) from “physical violence as such.” The latter includes constraints like imprisonment, but “also when access to transportation is unevenly distributed, keeping large segments of a population at the same place with mobility a monopoly of the selected few” (1969: 169). In theorizing the constraints that result from a built environment designed for able-bodied people, this aspect of structural violence becomes important.

96 forces such as poverty, discrimination, and lack of access to health care lead to increased rates of disease, human rights violations, and ultimately genocide. While forms of structural violence exist throughout the world, Farmer demonstrates that in post-colonial states they have the gravest consequences. In these situations, “acts of violence are perpetrated, usually by the strong against the weak, in complex social fields” (Farmer

2005: 9). Farmer argues that the lack of social and economic rights stemming from structural inequalities leads to violations of civil rights, and furthermore that these are conditions are within our power to change.

Farmer’s work parallels that of disability scholars in their attempt to shift discourse and analysis away from individualized notions of impairment to those that emphasize disabling political, environmental, and structural factors (Oliver 1990; Barnes

1996). Despite frequent references toward disabled people as a societal burden in the sense of being mostly non-productive workers, disability is a site of increasing profit for the charity and rehabilitation industries as services become increasingly commodified

(Albrecht 1992; Charlton 1998: 97; Mitchell and Snyder 2010). Zola (1972, 1982a) argued that as the medicalization of society proceeded to exert further control, maintaining a physically disabled population provides a steady basis for economic growth in health sectors. A subset of disability studies focuses on the social and economic causes of disablement, often dealing with disabilities that people are not born with. As Davis points out:

Only 15 percent of people with disabilities are born with their impairments. Disabilities are acquired by living in the world, but also by working in factories, driving in insufficiently safe cars, living in toxic environments or high-crime areas. Poor people comprise a disproportionate number of the disabled—this is borne out by comparisons both within the United States and between First and Third World countries—frequently born with low birth weight, succumbing to diseases that vaccines and medicines would prevent, living and working in dangerous conditions, and living with poor public hygiene (Davis 1995: 18)

In other words, many acquired disabilities can actually be prevented. Ethnographers can help ascertain how the subjective experience of disability is linked to broader economic and health conditions. In a sense, nearly all disabilities are “acquired” – even many of those that occur at birth derive from poor socioeconomic status.

In addition, it is important to remember how violence directly causes disablement, whether through armed conflict, urban crimes, industrial injuries, or environmental disasters (French 1994; Fortun 2001; Sider 2006). Most disabled Ecuadorians are well aware that Vice President Moreno was paralyzed following an armed robbery where he was shot while buying bread in Quito. In Ecuador, lack of legal protections place many laborers in risk of health conditions such as including those suffering from pollution in the floriculture industry (Korovkin 2002) or those facing toxic effects of petroleum extraction in the Amazon (Sawyer 2002, 2004).

While the structural violence approach is effective at linking discussions of negative health and quality life outcomes issues of poverty and social inequality, as deployed by anthropologists it often ignores local processes such the crises of social reproduction, the complexity of power relations, and questions of subjectivity and agency

(Biehl and Moran-Thomas 2009: 276). The role of the ethnographer entails putting a

98 human face on systemic causes of poor health without losing sight of historical forces that operate on macro and micro-levels.

The deleterious effects of dollarization and neoliberal policies have contributed to the inability of the state to meet public welfare obligations. Ecuador has one of the lowest ratios of social spending to economic production in Latin America. Since 1995, the average social spending stood at 4.7% of the domestic economy (European Commission

2007: 12). Government reports also indicate that half of all people with disabilities fall into the bottom two income quintiles,22 meaning that approximately 790,000 disabled individuals survive on less than thirty dollars per month. This percentage is twenty percent higher than the figure for non-disabled Ecuadorians. Given that disabled individuals have higher expenses, low wages and the additional burden of impairments create disincentives for labor market participation (Barnes 1991).

In the global South, community organizations are often concerned with issues that can be taken for granted in developed countries with expansive state support, architecture, and elaborate legal codes. Lack of enforcement of health and safety codes can lead to negative health consequences throughout Latin America (Navarro 2002;

Navarro 2009). At a more basic level, the level of infrastructure can also make living with a disability more onerous in locations like southern Ecuador. Like the many non- disabled Ecuadorians, people with disabilities face difficulties in meeting their basic

22 The upper limits for average monthly income in US dollars are as follows: quintile 1 – $9.93; quintile 2 – $31.23; quintile 3 - $58.69; quintile 4 - $105.3; quintile 5 – $2,935 (Cazar Flores et al. 2005: 50).

99 requirements of water, electricity, and natural gas. To be able to get natural gas for cooking and heating, most people have to be able to carry and mount heavy, metal cylinders – there is no piped natural gas in Cuenca. Although the central sections of the city have an underground water system, most people I spoke with receive large plastic jugs that hold twenty liters of water that are burdensome to transport and access. Lack of building codes and financial resources mean that electrical systems are often unreliable.

In a relative sense, lack of infrastructure in Ecuador makes living with a disability much more difficult in contexts with public utilities and well-maintained built environments.

During fieldwork, many of the most common questions I heard centered on the relative wealth enjoyed by disabled Americans. “I have heard that people with disabilities are paid five hundred dollars per month,” one person stated, looking at me quizzically.

“Is it true that you can get whatever type of motorized wheelchair that you need?” With my basic understanding of disability entitlement programs in the United States, I usually tried to offer nuanced reflections in response to such questions that acknowledged the privilege associated with people with disabilities in the Global North while simultaneously recognizing the economic burdens faced by disabled Americans. Like many Ecuadorians who tend to valorize American life, disabled people I spoke with were attentive to the profound material gulf that separates the Andes and North America.

Economic and Political Constraints in Managing Public Welfare

Key to the provision of public welfare in Ecuador is to understand the evolution of the state as a crucial institution in nation-building. Ecuador’s rich natural resources,

100 relatively small population, and transnational links were viewed in the 20th century as attractive conditions for global investment, leading to ideological commitment to modernization and development (Whitten 2003). Export of cacao, bananas, petroleum, and most recently flowers and minerals, has provided the basis for significant state revenue.23 However, the exploitation of natural resources has for the most part enriched a small proportion of Ecuadorians. Up until the election of President Correa in 2006, spending on health and social services has remained low as a percentage of government expenditures.

Neoliberalism and the “Pink Tide”

While state incentives to foreign investment have generated considerable revenue, the development of a modern welfare state remains an aspiration more than a reality

(Clark 2001). In recent decades, Ecuador has faced political instability, massive debt, growing gaps between rich and poor, and devaluation of its currency. It was one of many

Latin American nations to suffer from structural adjustment programs in the 1980s which led to one of the highest debt burdens in the Americas with severe impacts for Ecuador’s urban poor (Weiss 1997). Since the advent of neoliberal economic policies,24 more

23 “In 2010, crude and refined petroleum products accounted for 56% of total export earnings. Ecuador is the world's largest exporter of bananas and plantains (about $2 billion) and a major exporter of shrimp ($828 million) and cacao ($402 million). Exports of nontraditional products such as flowers ($598 million), canned fish ($601 million), and automobiles ($375 million) have become more important in recent years” (U.S. Department of State 2011). 24 “Neoliberalism is in the first instance is a theory of political economic practices that proposes that human well-being can best be advanced by liberating individual entrepreneurial freedoms

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Ecuadorians live in poverty and income inequality has worsened (Lind 2005: 8). The

GINI coefficient for land distribution registered at 0.89 in 1994 (World Bank 1996); more recent research has indicated that it decreased slightly since the mid-1990s (Farrow et al.

2005: 514).

The “success” of the neoliberal paradigm in the 1990s, as Gwynne and Kay

(2000) argue, stems from three factors. Two of the factors are economic in nature: neoliberal policies aided Latin American countries in recovering from the debt crisis of the 1970s, and in participating in increased global trade and investment. Another important factor was the role of governance as governments transitioned from authoritarian to more democratic. However, Gwynne and Kay contend that the neoliberal consensus held a tenuous grip on several governments: “During the 1990s neoliberalism achieved rapid growth but with increasing income inequity, more exclusion, and less social protection” (2000: 151). It is important to note that not all “neoliberalisms“ are the same; in comparison to Green’s (1998) view of “militant neoliberalism” in Guatemala, the version of neoliberalism in Ecuador has been unorthodox, gradual, and marked by populist politics (Lind 2005: 63).

Political and economic instability grew into a full-blown crisis in 2000 as Ecuador became the second nation in Latin American to adopt US dollars as its national currency.

As a result, most Ecuadorians experienced drastic reductions in their real incomes as increasingly worthless sucres were pegged to a fixed value in USD. The deleterious

and skills within an institutional framework characterized by strong private property rights, free markets, and free trade” (Harvey 2005: 2).

102 effects of dollarization and structural adjustment programs led to a number of important changes with regards to demographics, mobility, and economic development. Policies favoring agribusiness and industrial producers have led to the depopulation of rural areas in Ecuador. Massive migration, mostly to Spain and the United States, has meant that the remaining rural areas have higher concentrations of indigenous communities as poor and middle-class Ecuadorians have been more likely to migrate (Clark 1997). As the viability of small-scale agricultural production has deteriorated considerably, rural to urban migration has increased (Martínez Valle 2003). Accompanying these shifts, the retreat of the state from the provision of social services has placed a greater burden on Ecuadorian women (Lind 2002). In addition to the major shifts in economic policies impacted by neoliberal restructuring, since the 1990s Ecuador has also witnessed widening social stratification and the rise of popular social movements (Meisch 1992; Sawyer 2004; Lind

2005). Indigenous and left-leaning movements in particular have emphasized issues of social inequality, racism, and asymmetries in access to health care, housing, and education (Becker 2008).25

More recently, Ecuador has been placed with the so-called “pink tide” of political change that has led to left-leaning governments in several Latin American countries

(Robinson 2008: 289). In general, this “turn to left” entails politicians standing in opposition to the Washington Consensus and has come to stand in for anti-neoliberal

25 North and Cameron’s edited volume (2003) examines the uneven effects of structural adjustment on rural populations in Ecuador through historical analysis and case studies of the local impacts of neoliberal policies on NGOs, land distribution, and economic sustainability.

103 positions. Stopping short of a full embrace of socialist projects, governments in Brazil,

Argentina, Ecuador, Bolivia, Nicaragua, and Uruguay all came to power in opposition to neoliberalism (Robinson 2011). Andolina, Laurie, and Radcliffe (2009: 8-9) employ the term “social neoliberalism” to refer to the importance placed on issues such as cultural difference, environment, and civic participation within broader economic values of efficiency, efficiency and democracy.

The mixed record of success of “pink tide” governments in Latin America has caused scholars to offer more nuanced accounts of the ambiguous and multi-stranded elements of this “post-neoliberal” shift (Escobar 2010).26 In particular, many scholars have noted the divergent tendencies of the Correa administration toward both top-down, autocratic policies and initiatives aimed at strengthening democracy. Although

“interculturality” and respect for nature have been incorporated into Ecuador’s most recent constitution, it is far from clear whether such policies will have a lasting impact on citizenship practices. Walsh (2009) suggests that the realization of the ideals of interculturality require a “decolonial turn” and the political will to support structural changes. These anthropologists have made clear that the politics of the pink tide have widely varying results for particular social groups, and must been seen within longer historical trajectories. (cf. Mignolo 2009)

26 Escobar (2010) analyzes the tensions and cultural transformations that have taken place as Latin American governments are confronted with economic crisis and the growing power of popular social movements with Ecuador as one of the central case studies. The argument tracks debates around modernity and coloniality in anthropology and Latin American Studies.

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Despite Correa’s ambiguous record with popular and indigenous movements, his foreign economic policies have been anti-neoliberal in nature. Correa claimed

“exception” from massive debt obligations, invoking the notion of “odious debt” in 2008.

Through its Debt Audit Commission, Ecuador declared debt incurred by prior governments to be illegal. Correa refused to pay interest on global bonds – not because

Ecuador was unable to pay, as in the case of Argentina, but for political reasons including the claim that the debt had been taken on by military regimes. Despite uncertainty about the legal basis for the concept of odious debt (Nehru and Thomas 2008), Correa has attempted to invalidate the state obligations that began with neoliberal structural adjustment policies.

In Latin America, the main beneficiaries of neoliberal health policy reforms have been private corporations (Armada and Muntaner 2004). As countries like Ecuador accepted loans from the World Bank and other international financial institutions (IFIs), they were required to implement policies that promoted the privatization of health services. This privatization, as Armanda and Muntaner argue, decouples the financing and provision of services, while generating increased competition (2004: 32). “Cost recovery” mechanisms divide users by their ability to pay, exacerbating the highly skewed pre-existing access to health care. In these “commodification” models, those unable to pay for services lose out, while transnational and national corporations benefit greatly.

Along with deregulation and privatization, neoliberal policies have also been accompanied by an increased move toward decentralization in social development.

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Decentralization has actually been promoted from a range of perspectives including international financial institutions,27 socialist governments, and progressive politicians in

Africa, but as Collins and Green (1994) point out, does not always imply privatization. In some cases, decentralization can lead to an increased role for the state, making it susceptible to being used as a tool for political control (c.f. Ferguson 1994).

Collins (1989) stresses caution toward decentralization strategies, raising a number of critical concerns with regard to health care in Latin America. While generally supportive of decentralized programs for primary health care, he fears two trends in particular. For one, decentralization may be used as a means for displacing social conflict from the center to peripheral areas less capable of mounting opposition. These strategies can also paradoxically strengthen the central state by using the rhetoric of devolution to mask persistent control. Rather than transferring power to the local level, these false devolution tactics merely disaggregate decision-making from central bureaucracies to their field offices but fail to shift power away from the agency. Thus decentralization strategies are highly vulnerable to exploitation from technocrats.

The State’s Role in Managing Disability

In the 1970s, various agencies began to take a role in monitoring and governing disability. The Ecuadorian government’s formal attention to disability dates to 1973 with

27 Examples of international financial institutions (IFIs) include regional development banks like the Interamerican Development Bank and bodies like the World Bank and the International Monentary Fund.

106 the creation of El Consejo Nacional de Rehabilitación Profesional (CONAREP, or the

National Council of Vocational Rehabilitation charged with occupational training and employment for people with disabilities (CONADIS 2010). In 1977, the Education Act determined that special education was the responsibility of the state, which led the

Unidad de Educación Especial (Special Education Unit) in 1979. Following the establishment of the División Nacional de Rehabilitación en el Ministerio de Salud

(National Division of Rehabilitation in the Ministry of Health), health care coverage and rehabilitation coverage expanded through most of Ecuador’s provinces. Throughout the

1980s, spurred in part by the United Nations Decade of Persons with Disabilities,

Ecuador expanded the role of government agencies. In 1982, the predecessor to

CONADIS was created: Dirección Nacional de Rehabilitación Integral del Minusválido

– DINARIM, or National Directorate for the Comprehensive Rehabilitation of the

Handicapped. However, in the period since CONADIS was formed in 1996, funding for many of these agencies have gradually been cut (CONADIS 2010).

The fluctuations in funding for health, education, and other social services relevant to disabled populations are directly related to the economic crises in Ecuador caused by neoliberal policies in the quarter century between 1980 and 2005. Discussions with CONADIS officials in Quito revealed that while institutions have been created to address the needs of people with disabilities, very little funding was actually available to spend outside the minimum needed to conduct surveys and maintain staff. Thus, although recent campaigns in Ecuador aimed at dealing with disability issues present more explicit

107 state policies, the question of how to treat disabled, chronically ill, and elderly populations is a perpetual question that is discussed further in chapter 6.

Unequal access to medical care limits the ability of many families to cope with adverse health conditions, especially for those that cannot afford to access the costly private healthcare system. Many people I spoke with had to travel either to large

Ecuadorian cities such as Quito or Cuenca, or to international destinations such as Cuba,

Venezuela, and Colombia – countries with low-cost public health systems. Foreign trips often necessitated years of savings, although the medical procedure was free in most cases.28

Unfortunately, some people I spoke with acquired even more severe disabilities as a result of medical interventions. I heard from a number of informants that their initial impairment had been exacerbated through medical procedures, and that they had no legal recourse. For a few people with visual impairments, routine infections had turned into severe conditions that later led to vision loss. Most of the members of ANA with these problems lived in parts of Ecuador with little access to health care and had subsequently migrated to Cuenca after becoming visual impaired. The boundary between congenital and acquired disabilities becomes less distinct in cases where minor congenital impairments are made into severe disabilities through faulty medical interventions. Their

28 While some have argued that we are witnessing a reversal of people traveling from the global north to the southern for medical services, I think these trips represent an intriguing example of “south-south” medical tourism (Sobo 2009; Kangas 2010; Whittaker et al. 2010).

108 experiences show that lack of or misuse of medical knowledge has unfortunately produced disabilities in Ecuador.

Misrecognized as a Borracho

One of the troubling dynamics I encountered in Cuenca had to do with experiences marked by shame and social isolation that resulted from structural violence – inadequate health systems, unemployment, and the feeling that any sort of political or public life had long been foreclosed for disabled people. There is often a disconnect between statistics, media discourses, or other representations of suffering and the actual practices and life stories of the people with whom ethnographers engage (Green 1998).

While many of the individuals I encountered were not entirely abandoned by their immediate families, they often told stories of living in isolation for years or decades in their homes. A man named Ebelio who had been paralyzed by a faulty medical operation in the early 1980s was one such person.

After I started attending community meetings at SPD, I noticed that roughly a quarter of attendees often talked very little. With assistance from the SPD president I eventually sat down to speak with one of these individuals. I arrived out of breath after trudging up the hill. My appearance prompted the office manager Maria and Ebelio to remark that they could never walk up that hill in any condition. Dressed in a black leather jacket, Ebelio was waiting for our interview. Behind him, a list of birthdays indicated that he had just turned 65. Ebelio was about five and a half feet tall, with curly graying hair, and used a cane with a gray plastic holder. Since his right arm hung limply below the

109 elbow, the device helped him to maneuver using just the upper part of his arm. Ebelio’s disability resists medical categorization in that it can be conceived of a physical, cognitive, and communicative impairment. He described his condition as a gradual paralysis from brain cancer.29 He formed words very carefully and slowly, taking much longer than is typical in normal conversation. It was the gap between his mind, which

“works perfectly fine,” and his ability to speak that most frustrated Ebelio.

Ebelio’s narrative contained three important events: the cause of his disablement, a long period of being ostracized and isolated, and an eventual acceptance of his condition. Thirty years ago, Ebelio suffered two different attacks where the right side of his body appeared to be paralyzed and the left side of his heart hurt badly. After the first attack, he went to a doctor in Gualaceo (see Figure 4 for the map of Azuay) who indicated that he needed to go to Quito. Persuaded by his cousin that the doctor was lying, Ebelio ignored the advice. Following the second attack, a second doctor indicated that he likely had a brain tumor. Ebelio explained that he had one of the first magnetic imaging scans in Ecuador,30 and it revealed that the tumor would need to be removed.

This is where the Ebelio’s account became incredible. He explained to me that for liability reasons, the doctor who operated refused to take out the tumor once he saw it.

29 The suggestion made by Hyden and Antelius (2011) that alongside narrative analysis, nonconventional, embodied forms of storytelling when working with people with communicative disabilities resonated after speaking with Ebelio. 30 Since scientists invented Magnetic Resonance Imaging in 1977, MRIs in Ecuador indeed would have been cutting edge technology in the early 1980s.

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But his cousin, in the operating room, decided to remove it – Ebelio was not explicit about how this took place even after I prodded him.

From that point, Ebelio suffered a gradual paralysis from the brain cancer and a loss of speech and locomotion. Many of his social contacts were inexorably altered and he was unable to hold down steady employment because people mistakenly believed he was inebriated, not paralyzed. Local youth often taunted him by calling him a borracho

(drunk). His sense of shame peaked during an accident that occurred in 1991 as his grandson was being born. With his voice shaking, Ebelio explained how a nun denied him access to the hospital room because she said that drunks were not allowed into these areas. Ebelio was devastated when she would not relent, and simply fell to the ground. It was not until hours later that they finally let him in. Being barred from seeing his nieto signified the lowest moment of this life, a “total rejection” that was made worse by a woman who professed to be a “person of God.” Ebelio’s sense of outrage gave way to a period of despair where he rarely left his house and gave up working with a speech therapist.

After our two hour interview at SPD, Ebelio and I both left to take the bus back to central Cuenca. Riding the bus with Ebelio gave me a chance to finish our conversation and also witness how other people treated him. To get on the bus – which, like most buses in Ecuador did not stop moving to let us on -- Ebelio swung his partially paralyzed leg up the steps with an unexpected grace. Although his cane momentarily got stuck between the door and a metal bar, the chofer (bus driver) and ayudante (driver’s assistant) were unusually patient. I paid the twelve cents for his half-price fare and moved

111 toward the back of the bus. We sat near the back since the passengers sitting in the front took little notice of Ebelio’s impairment. The scene reminded me of the paradox that faces many disabled Ecuadorians: the experience of being hyper-visible when one’s impairment disrupts normal ways of performing daily activities like getting on a bus, but being treated with indifference or ignorance when it comes to receiving assistance. For his part, Ebelio acted as if his presence did not merit any special accommodation although he appreciated the consideration shown by the bus driver.

As we rode back to town, Ebelio communicated a motif of acceptance through a last story about how he suddenly quit smoking. For years, Ebelio had smoked “to have something to do,” but also since he didn’t really care how long he lived. But following an operation for a hernia, Ebelio had a revelation that his life was “in fact worth living,” and recalls throwing his cigarettes on the ground and stomping on them. Ebelio’s last story helped explain how he had been able to come to SPD to associate with other disabled compañeros. As he talked about how SPD had come to feel like a “second family” in a period where people with disabilities had begun to feel less isolated, my impression was that Ebelio’s self-acceptance was tied into the positive community spaces created by

SPD.

Placing the current status of disabled people within broader historical trends helps to make sense of the ethnographic data I gathered in Cuenca. In Francisco’s case, his original injury is linked to his participation in the mining industry, and occurred during a

112 period where there was little social protection for injured workers.31 However, he has also benefited from employment policies that encourage the hiring of disabled workers. While

Francisco’s story looks like a success in some ways, it is fairly unique. He has been able to take advantage of new laws and the ability of his family and social networks to pay for rehabilitation. In Ebelio’s case, inadequate health services meant that he would not receive the medical treatment he would need to deal with unclear etiology of his condition. For both individuals, limited household income also prevented them from receiving sufficient care in terms of rehabilitation. In Ebelio’s case, the stigma associated with his experience discouraged him from taking advantage of speech or occupational therapy options. As I will show in later chapters, social groups like community organizations and athletic teams have played an important part in helping people deal with the challenges of living with a disability.

Conclusions

A range of historical conditions have contributed to the marginalization of people with disabilities in Ecuador including inadequate health care, poverty, and the inability of the state to prevent individuals from acquiring impairments. As Francisco’s case shows, the cause of injury and the limited ability to pay for ensuing medical costs play a large

31 After slow growth in its mining sector, Ecuador has recently invited more multinational companies to conduct exploratory projects (U.S. Department of State 2011). Since 2009, indigenous communities in Southern Ecuador have been some of President Correa’s most vocal critics (Denvir 2009). Such actions offer support for Escobar’s (2010: 20) depiction of Correa as “neo-developmentalist.”

113 factor in how a disability affects the livelihood of particular families. Ebelio’s story illustrates how the meanings attached to disability often shift over time in relation to changing cultural attitudes, new forms of technology, and individual efforts at bodily management.

Ignoring the way that disablement is produced through structural and direct forms of violence reinforces the assumption that disability is a medical, personal, and largely static phenomenon. In contrast, an ethnographic approach helps to unravel how bodily differences are produced through disabling forces that are both social and dynamic in nature. Systemic approaches to analyzing the roots of poor health outcomes, such as structural violence, can be a powerful rhetorical tool for dealing with social inequality in

Latin America. However, ethnography should play a key role in unpacking the broad manifestation of structural violence, or what Green (2004: 320) terms “the subtleties and complexities of power relations and the microeconomics of difference.” In places like

Cuenca, these processes include differentiation along gender, racial, and political lines, and aid in understanding how particular social spaces have come into existence and persist over time. These dynamics lead to questions addressed in the following chapters:

How are forms of social neglect produced in Cuenca? If we follow Clark and Becker

(2007) in conceptualizing the Ecuadorian state as a historically specific configuration of practices, full of contradictions and open to exploitation, the interface between government agencies and community-based organizations advocating for disability rights offers a lens to understand how marginalization is produced and remedied by the state.

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In the next chapter, I delve into the experiences of managing stigma in the context of changes in attitudes toward disability that depict progress to “modern” ways of thinking about bodily impairments. In Cuenca, discourses about contagion, inability, and pity play a central role in defining what it means to be disabled. For many people, community organizations like SPD and ANA serve as meeting places for people who have previously felt a sense of social abandonment.

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CHAPTER 4 – VERGÜENZA AND THE SELECTIVE PRODUCTION OF ABJECT BODIES

This chapter analyzes the centrality of discourses of vergüenza, or shame, in meanings of disability in Cuenca. Whereas chapter three focused on political and economic causes of disablement, this chapter relies on ethnographic vignettes to analyze how cultural meanings of disability are expressed through visual representations, the management of stigma, and beliefs about what types of people deserve charity. I argue that through these cultural meanings disabled people are reinscribed as abject bodies meant to be contained, fixed, or excluded. Moreover, a significant gulf exists between popular notions of disability that tend to be static, tragic and medicalized and those held by disabled people themselves. Disabled people see their impairments not as determining but rather as fluid, dynamic phenomena that may or may not impede them depending on the situation. In Cuenca, I suggest that the social, spatial, reproductive, and psychological isolation that disabled people experience is best conceived as a form of selective social negligence.

Medical anthropologists view the suffering experienced by marginalized groups as produced through a combination of social and economic factors. To understand the complexity of meanings attached to disability in Cuenca, I am inspired by Biehl’s (2001;

2005) analytical approach to understanding the lives of people who have been socially abandoned in Brazil. Biehl reconstructs the notion of social death from Mauss (1979) to consider how new forms of “socially authorized deaths” result from profound asymmetries in access to health care, unemployment, and resources. These inequalities

116 have produced “[s]ocial death and selective life extension” for people suffering from mental illness, homelessness, and AIDS (Biehl 2001: 137). In these systems, poor and unproductive people do not warrant government expense in making citizenship rights broadly accessible but instead are discarded and eventually allowed to die. I use the phrase “local production of social negligence” to describe the cultural and historical conditions that exclude people with physical and visual disabilities from participation in

Cuencan society. While in some cases such isolation has also led to social death, I refer to a population with an experience less extreme than that Biehl describes – social isolation rather than social death is more appropriate.

The term neglect also conjures the idea of “conditions of disregard,” which Stoler

(2009: 256) explains as cultural mechanisms that enable willful ignorance of particular social problems or communities (cf. Green 2011). The notion of disregard helps to explain the ability of non-disabled individuals to reconcile their own ethical beliefs about treatment of disabled people with the reality of severe inequities; this includes the ability to be willfully ignorant or to exempt oneself from confronting abject subjects. Framing the marginalization of disabled Ecuadorians as an issue of the local production of social neglect emphasizes the role played by non-disabled citizens, medical experts, and wider institutional asymmetries, a theme which is explored in the next three chapters.

Extending the previous chapter’s discussion of the economic constraints faced by disabled people, I highlight the ambiguities that exist in thinking about social neglect, such as the indistinct lines between charity, pity, and marginalization. I analyze the social construction of bodily difference, urban and rural distancing, the politics of begging, and

117 hierarchies of language and impairment to argue that abjection and fear of social contagion plays an important role in the marginalization experienced by many disabled

Ecuadorians. In these examples, a common perception is that disabled people are in need of aid proportional to the severity of their impairment. Although there is some relationship, it is also often true that individuals with invisible or hidden disabilities have greater needs that those assumed to have severe impairments, such as wheelchair users or amputees. While my goal is to examine the cultural practices that contribute to persistent marginality for people with disabilities, I follow the lead offered by Biehl and Moran-

Thomas (2009: 281) in suggesting that anthropologists can shed light on the ways that shame, stigma, and exclusion are challenged and subverted by disabled subjects.

“No One Knew Me”

To understand neglect and social isolation, I had to depend on learning about past experiences through ethnographic interviewing. Especially in the early months of fieldwork, I frequently encountered the standard paradox of locating what could be considered marginal subjects – by definition, they ought to be difficult to find and speak with. I noticed that in the course of many interviews, the idea that people with disabilities were profoundly neglected was often narrated through tales of the past, or of “other families.” It was often in the latter part of interviews or in subsequent conversations that personal experiences with isolation and shame were revealed.

One example emerged during an interview with Pablo, a young man in his mid- twenties. Due to a congenital impairment that prevented him from walking without an

118 aid, Pablo used a set of crutches. He was unsure of the name of the medical condition that caused his disability, but was told that if he had been treated at birth, he likely would have been able to walk. Pablo described how he knew of wealthy families in the southern city of Loja who had sequestered their disabled children apart from the rest of the family, building entire households with servants to care for their children. When I expressed surprise at this story, Pablo assured me that he in fact knew this family and could verify that it was true. He then delved into his personal experience as if to prove that he was not making it up.

Pablo spent most of his childhood isolated in his mother’s store. “I was twenty years old, and I had never been out of my house – no one knew me.” While neighbors were familiar with his nine siblings, they had never seen or heard about Pablo. His mother was the proprietor of a small tienda (store). Like many small tiendas in this part of the world, thick metal bars separated customers from the good available for sale so that purchases were made through a square window about the size of a stop-sign. Pablo’s family lived above the store, but he explained that she required him to remain hidden behind the counter. For Pablo, the freedom of movement and opportunities that he encountered after moving from Loja to Cuenca contrasted sharply with the isolation of his youth.

What makes Pablo unique is not so much the social isolation he experienced as a child, but rather his willingness to give voice to circumstances that he felt were shameful and unfortunate in retrospect. He was one of the few people I met willing to describe in intimate terms issues of vergüenza or past recollections of being escondido (hidden) or

119 abandonado (abandoned). Each of these three terms -- shamed, hidden, abandoned -- were often used by disabled people I spoke with to describe the status of disabled

Ecuadorians in the recent past. In contrast, narratives of contemporary disability experience were juxtaposed as “better” or “more open” or “easier” than in the past.

While these narratives imply a sense of progress, many people also spoke of continued discrimination, shame, and marginalization for specific groups of people with disabilities. For instance, I heard the idea that those “trapped” in rural areas face persistent forms of isolation. In speeches made during 2008, Vice President Moreno referred to those still locked up in “chicken coops and sheds” and admonished their families not to abandon them. Meanwhile, even Pablo’s acknowledgment that his life had improved upon moving to Cuenca was tempered by anger around his inability to secure a job that paid a decent wage. In discussing the tensions between new social opportunities and past legacies of marginalization faced by Pablo and people like him, I begin by with analyzing the management of stigma.

Managing the Stigma of Disability

Inspired by sociologists focused on deviance and labeling, scholars in the 1960s began to focus on the social experience of people with disabilities. Building from

Goffman’s (1959, 1963) notions of stigma and impression management, disability was seen as a label that determined societal treatment and molded identities. Physical differences generate discomfort for both those deemed to deviate from socially acceptable social identities in ways that are seen as shameful and undesirable (Goffman

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1963). Possessing a disability was one of several forms of deviance from normal persons

(Becker 1963), or a permanent occupation of what Parsons (1951) called the “sick role.”

Marked off as a viable object of social inquiry, studies of the experience of people with different types of impairments ensued, including notable studies of blind people (Scott

1969) and people with mental retardation (Edgerton 1984), and close study of interactions between disabled and non-disabled individuals (Davis 1961).

Murphy (1987) combined theories of stigma with liminality (Turner 1969) to describe how disabled people occupy undefined spaces that defy categories. Based on his personal experience in acquiring a disability late in life, Murphy drew attention to how people with disabilities are sequestered, demeaned, and considered misfits within

Western models of life/work expectations (Murphy et al. 1988). Taken as a whole, these sociological theories of disability, all based on the social stigma of human interaction, have provided a holistic model that is still useful despite its limitations (Thomson 1997:

32).32

In Ecuador, the most frequent terms used in my interviews and in popular accounts of disability include escondidos (hidden) and abandonados (abandoned). As in other parts of Latin America, people with disabilities were frequently excluded from the public sphere and often spent the majority of their life at home (Aptekar 1983). Many of the people I interviewed explained that bodily or behavioral differences were seen to bring a sense of vergüenza (shame) to the family. Disability is frequently associated with

32 See also scholarship on depictions of stigma and shame through (mostly negative) portrayals of disability in film and literature (Zola 1985; Hahn 1987; Snyder and Mitchell 2006).

121 vergüenza in part because it is thought to signify a tragic life circumstance that is deserving of pity and charity. Many of my informants encountered patronizing responses such as “pobrecito/a” (poor little one) or “qué pena.” Qué pena can be translated as

“what a shame,” but it can also connote punishment or difficulty.33

Vergüenza marked not just individuals with disabilities, but the family as a whole.

Goffman coined the term “courtesy stigma” (1963: 30) to describe how other family members can be discredited along with the stigmatized person. The strength of the association may depend on the severity of the illness or disability (Ablon 1995), but can be concealed and also depend on variable strategies of managing stigma (MacRae 1999).

Another indicator of the stigma attached to disability stems from the taboo of speaking about the topic in conversation. Both disabled and nondisabled Cuencanos suggested to me that disability is an issue that people are simply uncomfortable speaking about. I found this to be the case particularly during interviews with nondisabled people.

As they struggled to use politically correct terms and to gauge my impressions of their beliefs, there were often a series of uncomfortable utterances. Many spoke in

33 Beyond the description value in stigma as the discomfort associated with physical differences that deviate significantly from socially acceptable norms are explanations for disability and difference. In interviews with Mexican-American parents of disabled children, Mardiros (1989: 61-62) identified two types of disability etiology: biomedical and sociocultural. All parents in the study held a mix of both types of views, but placed great value on sociocultural causes of disablement. Factors such as past transgressions, the fear of spousal violence or neglect, or acts of disgrace were all thought to affect the baby in utero. In addition, divine interventions and mal de ojo (evil eye) or susto (fright), common folk illnesses in Latin America were also believed to lead to disabilities. Although I rarely heard people in Cuenca discuss disability in these ways, I suspect more investigation may reveal a wide range of potential causes of disablement and illness.

122 euphemisms or waited for me to express an opinion about the state of disability politics in

Ecuador before they would offer their perceptions or acknowledge their viewpoint.

Charity and Religious Expectations

For many people I spoke with, the ultimate authority on the meanings of disability was Dios (God). In the majority of conversations I had with people about the cause and solution for coping with disabilities, the “will of God” provided an answer for the basic ontology of the world of which illness and debility was one part. Being Catholic offers a pervasive medium to understand the world. During interviews, my informants would often point to the ceiling, look at me with a knowing smile, and say “Thanks to God.”

These spiritual invocations were part of the normal fabric of being Ecuadorian, but they were especially useful in explaining the cause and acceptance of one’s own impairment.

“God arranges things as they should be,” one man explained, “and if they come apart it is because of something that we did to ourselves.” At times, these explanations were employed to frame disability as a moral or mental challenge that has been given to people with impairments. In other words, only God can choose who has or does not have a disability, and it is up to the individual to accept what they have been given. Those that can cope with atypical bodies show mental fortitude and their faith in God.

I discovered how deeply religious beliefs shape disability during the third asamblea (meeting) I attended at SPD. Falling near the Ecuadorian version of Mother’s

Day (Día de la Madre), this particular asamblea turned out to be three events in one: a catholic mass and a mother’s day celebration followed by a dance party. As people filed

123 in through the light rain, SPDC leader scurried around the room in preparation. The room was arranged into orderly rows of eight chairs across and ten deep, and was about eighty percent full. Nearly all the people in attendance had some type of visible disability marked by an obvious impairment or an aid of some kind (wheelchair, cane, prosthetic limb). For once, I didn’t have to greet each person individually since the mass was about to start. During the next forty-five minutes, the priest offered insight about disability from his experiences living in Japan. He contrasted Christian approaches to disability that focused on hope and acceptance, rather than depression and hopelessness that he claimed was pervasive for people who were not religious. Afterward, the priest administered the sacrament to attendees by walking around rather than having them come to him.

Between interviews, conversations, and other church-based events, I came to see the profound role that Catholic beliefs play in meanings of disability in Cuenca. For instance, the motif of acceptance and divine judgment suggests that in some ways disability is immutable. As a phenomenon ordained by Dios, charity and pity are acceptable responses. This can be one justification for why some disabled Ecuadorians are considered to belong to the “deserving” poor (c.f. Swanson 2010: 76); the idea is that their inability to fend for themselves makes them worthy of charitable treatment.

Fear of Contagion and Abjection

Scholars have also drawn on notion of the abject to theorize social anxieties about waste and defilement. For instance, Sibley (1995) employs Kristeva’s (1982) notion of

“abjection” to argue that the internal desire to rid oneself of impurities extends to social

124 anxieties about moral disorder and the logic of exclusion. Strategies of social exclusion derive from the extrapolation of fear or dread about infection of the social body

(Stallybrass and White 1986; Cresswell 1997; Moore 2008).34 More than the discomfort associated with stigma, abjection emphasizes the “unattainable desire to expel” (Sibley

1993:18) matter that is “out of place” (Douglas 1966). In various cases, bodily impairments in Cuenca were framed in similar terms: as phenomena to be contained, banished or hidden.

The fear of contagion was touched upon by several informants as playing a strong role in creating stigma. Goods produced by disabled people can also be considered to carry contagions. A staff member from one of the disability organizations in Cuenca,

Rocio, related the following story about their experience with a bakery that had been run by disabled youth from their organization. After the bakery had been open for a few weeks, a local official, Doña Diaz, who had participated in funding the project arrived for a tour. Doña Diaz was elated by how the project had turned out, and the situation was fine until she was offered a sample of the bread baked by the students. Rocio recounted how Doña Diaz’s face changed completely, and she refused to eat the bread. Rocio later realized that the official held an assumption shared widely by non-disabled Cuencanos – that disability can be contagious, and objects that they touch can lead to contamination, or what Douglas (1966) might call a boundary between polluted and pure objects. If food

34 For the concept of “abject citizenship”, see work on marginalized youth (Sharkey and Shields 2008: 242) that suggests how being shunned or forgotten can lead to new forms of insider communities. Popke and Ballard (2004) consider abjection in relation to local ideas about social order and public space in post-apartheid South Africa.

125 produced by disabled people is refused by non-disabled clients, Rocio reasoned, then micro-enterprise bakeries are simply untenable.

Blindness in particular is something that non-disabled Ecuadorians have frequently assumed to be infectious, and as such it generally creates discomfort. One of the members of ANA, Ximena, explained how the fear of difference continues to make her professional life difficult. An affable mother, Ximena wore dark glasses and had progressively lost her vision over the last decade. Since she divorced several years ago, raising her three sons was very difficult.

Ximena explained that in her job at a fast-food restaurant (Burger King at the local shopping center, the Mall del Rio), her employers simply did not understand that she would never be able to function like an able-bodied worker. Although they had been eager to hire her in order to avoid a tax liability, they were impatient with the time it took to memorize the restaurant’s layout and food delivery procedures. Even though she had a steady job, Ximena left the position since there are too many social and physical barriers that her employer was unable or willing to remedy. Her story shows that her visual impairment prevents her from learning the appropriate spatial behaviors expected from a fast-food worker. According to Ximena, it was equally important they had no control over discomfort that customers may feel about employees with disabilities. In numerous occasions, customers complained that they were uncomfortable with Ximena’s presence in the restaurant.

Ximena also suggested that stigma plays a role in how people with disabilities make use of assistive technologies. She explained that although she can get around more

126 efficiently and safely with her cane, she often leaves it behind since her sons do not like to be seen with a visibly disabled mother. The social stigma attached to using a cane makes them stand out as a spectacle as they walk through Cuenca, and Ximena has adjusted her behavior to lessen their discomfort. This example shows that social attitudes toward disability can trump technical responses to dealing with accessibility.

One of the major problems that people with disabilities face in Cuenca is actually the opposite of neglect, but rather a compulsive need to help. This is particularly a problem for people who use devices that assist with their mobility, such as canes or wheelchairs. For Ximena, the contemporary attitude of Cuencanos continues to fall in the realm of ignorance, even though people with disabilities are less often confined to private spaces. As they have moved into public spaces, there are often excessive offers of help and assistance that end up making her uncomfortable. Ximena and some of her colleagues frequently leave their canes behind so as not to draw unnecessary attention to themselves. As Ximena put it, people go too far to the other extreme: “they want to help, but too much – they don’t understand that we don’t want compassion or even help sometimes, but just understanding.” I see this type of awkward, shallow assistance that people offer as an outgrowth of the accumulated results of social negligence about disability in Ecuador. Ximena’s description of how disability was perceived to be communicable contrasted between past and present treatment of novidentes. “In the past,” she said during one of our conversations, “it was very difficult – much more difficult.

People saw us as contagious, or sometimes like an alien.” Ximena pointed out that in her youth, the relative invisibility of visually impaired people made them stand out. People

127 assumed that because she used a cane that she was able to transmit something that might infect them.

The boundary between pollution and purity can be intentionally crossed in an effort to be in solidarity with a stigmatized population. Although such actions are intended to validate the social worth of the subaltern group, they also reify difference by marking out value. Transgressive social action can involve juxtaposing objects of high and low cultural value with each other (Stallybrass and White 1986). This was vividly illustrated in 2008 when the reigning beauty queen – Miss Cuenca – appeared at several rallies for disability rights. Given the importance of beauty queens in the Andes (Rogers

1998), her presence brought increased attention to disability awareness.

At these events, Miss Cuenca’s mingling with disabled Cuencanos can be read as solidarity between individuals who occupy opposite ends of the spectrum of physical attractiveness in Ecuador. In addition to demonstrating a commitment to disability rights,

Miss Cuenca’s active involvement with people with disabilities purposely violate cultural expectations that discourage interaction between elites and lower status people in Cuenca.

Her work with what she terms niños diferentes (children with differences) validates the magnitude of her public service since it’s understood that she is working with a highly stigmatized group. Her charity work ensures that disability remains socially devalued.

Spatiotemporal Displacement

The enduring dynamics that paint a picture of the urban, modern elites and rural, backward peasants arose in discussions of the meanings of disability in Cuenca. One of

128 the ways that people depict changing notions of disability has to do with a temporal framework that places discrimination and neglect into the past. Substandard health conditions are described as either an issue of the past or an issue for backward, rural populations, but not for Cuencanos. In other words, the severity of shame and invisibility associated with disability was presented as if it had lessened when compared to the situation a generation earlier. In particular, middle-class people I spoke with often contrasted their experience by referring to less fortunate others. These “others” may be people who live in rural areas, are less educated, or may also refer to the generalized

(personal or collective) experience of people in the past.35

A school teacher named Gustavo explained to me the differences between past and present in terms of the social status for people with disabilities. Gustavo contracted polio as a baby, but had been fortunate enough to marry, have children, and work as a high school teacher. However, Gustavo clearly connected what we might label structural violence as the cause of his preventable impairment. Born in 1960s when immunizations were not widely administered in Ecuador, Gustavo is a member of a cohort of people who survived after contracting the poliomyelitis virus. He explained how marginality occurred both in the past and in rural areas:

35 My argument about temporal displacement indirectly draws on Fabian’s (1983) epistemological critique of ethnography; see also Munn’s (1992) review of the anthropology of time.

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In the past there was more segregation, but it depended on where you were. For example, here in the city I was treated well; that is, everyone pampers you, loves you, gives you support. But I know rural people that have been treated as if they were some sort of phenomenon, as something strange and so were insulted, people hit them, but I thank God that in my case, ever since childhood people have been more or less tolerant.

In contrast to Pablo, above Gustavo explains discrimination as something that has occurred to other people that he knows, but not to him. While he lacked personal experience with poor treatment, he expressed sympathy for others who face more difficult situations. He was also alluding to the notion of cities as tolerant of differences.36

Gustavo also expressed concern that lack of healthcare continued to plague more remote regions of Ecuador.

In the course of speaking about the causes of disability, I often heard comments about the link between poverty, lack of education, and families with disabled members.

These often occurred in liminal moments, such as just before or after I turned off my microphone, or during normal conversations both with disabled and non-disabled individuals. While at first it seemed that such comments were sensitive to structural causes of disability, it later became clear that many people believed that families with disabled family members were to blame for their “plight.” In other words, some suggested, children were born with (intellectual and developmental) disabilities in part because of lack of education in the countryside, or in other words, a form of environmental determinism. One store-owner explained to me that in most of the country it was alcohol dependency that caused disability; in coastal Guayaquil (Ecuador’s largest

36 The idea that cities are more tolerant of differences than rural areas is a classic idea in urban sociology (Park 1915) .

130 city), it was drugs. The insinuation was that disability could be prevented by better behavior, and that the abandonment and neglect referred to by Vice President Moreno stemmed from lack of education. While agreeing that poverty and lack of education could contribute to disability, blame was placed on the families who “didn’t know any better” or who didn’t have resources.

For disability advocates in Cuenca, the visibility brought to the topic of disability helps counter claims that the social neglect of disabled people is something that occurred in the past, or only in rural areas. One of the leaders of SPD, Eugenia, asserted that it is only recently that the government had realized the full extent of poverty and marginalization for disabled Ecuadorians. Although Eugenia viewed the recent campaigns as helpful, she felt the “reality of the situation is horrible.” She felt that that the government had finally realized that disabled people have little resources, and are unable to buy wheelchairs or walkers or other types of technical aides. “What is going on,” she explained, “is that many young children grow up lying in bed and they cannot even go outside because they are already large and heavy.”

The question for Eugenia predates these campaigns: how have these people survived up until now, and why has the government never paid attention to their needs?

How are they supposed to know about wheelchairs and government aid when they have no electricity, mail, or health center? One of her solutions was a more complete effort at census taking in order to expose to depth of overall need.37 Although she rejected cultural

37 I analyze the ambiguous results of government surveys as a technique of governance in chapter 6.

131 explanations for the causes of disability, she emphasized that widespread marginalization was a contemporary problem both in rural and urban areas of southern Ecuador.

Eugenia spoke about many of the issues that other informants often only alluded to or stated in indirect ways. Because there has been more attention to disability issues in the last decade, many people appear to want to distance the current situation from what they imagine or have experienced as historical neglect. In contrast to Gustavo, Eugenia felt passionate about discussing ongoing forms of exclusion. Like Pablo, she wanted to discuss the “reality” of social exclusion in order to ensure that contemporary forms of marginalization are not argued away as remnants of the past or distant countryside.

Sonia, a senior administrator at CONADIS, explained to me how meanings attached to disability had shifted over time. Sonia had been involved with CONADIS since its inception in 1996. As the interview began, she peered at me closely over her glasses. I remember thinking that her professional attire, blonde hair, and piercing eyes made her seem younger than fifty-five. Sonia was a medical doctor and a parent of a disabled child. She explained how meanings attached to disability had shifted:

In recent years, things have improved greatly because before it [disability] was an unknown, hidden topic. There were many people in this country who hid their family members, and now there is less a sense of family shame or feelings of guilt.

It has changed into a being a more public issue as the media has given the topic of disability more attention in recent years. But also, the presence of the vice president of the republic sitting in a wheelchair has made the issue of disability much more visible, as well as the rights of people with disabilities. Now there are more opportunities to work, especially with groups that work [on disability issues]. It seems that it has really improved the self-esteem of people with disabilities to see a vice president who uses a wheelchair – it’s something that would have seemed unimaginable in the past.

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These days there are more prominent people with disabilities, and this has raised their self-esteem so that they now are preparing themselves to be trained and move forward. Not as many are sitting back with their arms crossed and saying, ‘I’m disabled so I must be screwed [me fregué] for life, that it would be better to sit on my hands and isolate myself at home within my family.’ As parents have encouraged their children with disabilities to be more productive and educated, they are taking a more proactive approach.

Sonia reiterates the idea that shame has lessened in recent years as public attention has made the acknowledgement of disability within one’s family possible. She likewise stressed how having a Vice President who is a wheelchair user has changed expectations about what a person with a disability is capable of accomplishing. Sonia also touched on the idea that one major response to discrimination or lack of opportunity was apathy, or what she calls acting as if one is “screwed for life.” Although she indicated that fewer people expressed such apathy, she was also suggesting that many people are were approaching their lives in that way. I remember thinking that Sonia’s framing of the problem relied on psychological notions of individualized self-esteem, almost blaming disabled people for internalizing oppression (Freire 1993). Sonia’s way of thinking about disability focuses more on the responses of individuals than sociocultural issues.

One challenge faced by some disabled Cuencanos is the necessity to care for other family members with disabilities. Blanca, a woman born with internal cataracts that were inherited, is the head of household with six people who have disabilities. She and two of her children are blind, two of her siblings have cerebral palsy, and one brother is deaf.

Although Blanca had a university degree in social work and has been a teacher in the past, she was studying to be a massage therapist by taking classes in reflexology with the objective of having more stable work in the future. What concerns Blanca is that people

133 underestimate what she is capable of accomplishing. “I would like to get ahead in life,” she said, “and I don’t like it when people think simply because we’re disabled that we ought to be forgotten. When people judge me before they know who I am, I ignore them.” Blanca suggested that such considerations are significant barriers to working in formal job markets.

Blanca explained that although historically families have kept disabled family members hidden, the situation has been slowly changing in places like Cuenca. There continues to be a mix of conservative and more open approaches. Whereas in some places there are more opportunities to go to school or receive assistance, in other places, outdated attitudes remain:

Before, when officials encouraged disabled children to go to school, the families would say ‘how are they going to study?’ and that begging on the street would be better. This was the ideology of my father, for example who said that since I am blind I would have to depend on charity. In contrast, my mother fought for my right to go to school, which was very important since once I got to school there were scholarships and more outside assistance.

Blanca represents a case where through family encouragement and assistance, she was able to earn a university degree during a period where doing so was extremely rare. As she pointed out, in neighboring provinces, the majority of disabled people remain in their homes. She explained that they often fear to leave their homes for fear of being assaulted, kidnapped, or ridiculed. Blanca’s opinion was that since many families have members who get by on remittances, they do not see a need to study or be concerned about the future, which she considered to be short-sighted. She posed the question, “Who is going to help them when remittances dry up?” Dependence on either the state or on family members were both concerns for Blanca.

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Begging as a Livelihood Strategy

In speaking to non-disabled Ecuadorians, one of the most visible images of disability stems from those who choose to make a living in public places. The most common examples of people in this category include people who sell small amounts of candy on the bus, vendors, and those who beg from the street. Typical goods that are sold include lottery tickets, phone cards, newspapers, and handicrafts. Disabled panhandlers in

Cuenca can be found at several of the city’s largest intersections and near areas with high foot traffic occupying the same space day after day.

Enrique, an Afro-Ecuadorian man with no legs and no feet, is a well-known fixture in Cuenca’s downtown area who sits on a skateboard and solicits money from cars and pedestrians. As Enrique pushes himself along sidewalks and streets, he transgresses deep-rooted physical and social barriers that shape daily life for most Ecuadorians with disabilities. He was born with shortened legs, and uses a skateboard along with thick black gloves to push himself around, though he also owns a wheelchair. He is married, but his wife and daughter live in Guayaquil (coastal Ecuador, see Figure 1). Although

Enrique is fairly well-known in Cuenca, most people are unaware of his full story. As he explained, they are likely more comfortable simply giving him ten or twenty cents from their car than interacting with him as a person.

Enrique had a complicated way of describing his feelings about perceptions and attitudes toward disability in Ecuador. He talked about what he considered a series of myths that surround disability:

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Well, there has always been this myth, there was always this fear of interacting with a disabled person who was thought to have a disease, or negative perceptions that people have to consider us as the bottom of society, as pitiful ones, they were worthless, that they felt sorry for us.

Before, it was always that a person with a physical disability or a blind person was seen as an outsider – what a shame, what a pity, etc. and always linked to disease and begging, so all these myths, all these situations are derogatory … [now, however], they are being abolished and we are showing society that we can work just the same as others, and that we can be part of the development of a country, of our society.

As Enrique spoke about these myths, he emphasized that he also thought that things had been changing, and that what people like him were looking for was more opportunities to be included in society. Begging was clearly not just a means of making of living, but also of interacting with people in order to demonstrate his worth as a human being.

No, we do not want pity or shame, and don’t people to act as if we were strange worms (gusanos raros), what we want is for people to give us the possibility that they can understand that we have an disability, but all the same we are people with a range of perspectives, with all the potential for which we have been brought up with. We want to be given space in which we can show our different capabilities, right?

Enrique was objecting to treatment that conflated his identity with his impairment (Zola

1993). Like others, he emphasized that attitudes were improving over time in Cuenca, but that stigma still played a significant role in his everyday experiences. Enrique was clearly ambivalent about begging as a way of surviving, but explained that he had tried to apply for jobs in the past without success.

One of the more obvious ways that disability is performed occurs when individuals solicit money in public sites such as streets corners, buses, and public plazas.

Williams (1995) investigated begging on the subways of New York and in Tucson,

Arizona. Her analysis identified three types of approaches in publicly asking for money: those who uses their personalities, those who stuck to straight-forward requests for spare

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Figure 9. Cards handed out by disabled street people

137 change, and those willing to work for food. Whether or not such individuals have bodily impairments or not is unclear, but they make use of the appearance of impairment to solicit donations from strangers. Disabled street solicitors depend on specific performances to enhance their odds at earning the maximum amount of money. They often use props such as the handout shown in Figure 9 above to help explain the reasoning behind their solicitation and the justification for contributions.

Some of them, like Enrique, have been working for years, and follow a set schedule. For people who ride the bus, it is common to encounter disabled individuals who will quickly tell riders their story in order to ask for small donations. Such people get off and on the bus in cities such as Cuenca and Quito several times per hour, and if with at least one donation from each attempt, they can often make a few dollars per day.

Often, such individuals explain as part of their performance that although they have earned a university degree, they are unable to find work due to discrimination based on their impairment.

Like other people who solicit money, many disabled people who work on the street have devised strategies for ensuring that pedestrians can give them money without touching them directly. Cups, buckets, and plates are used to prevent interpersonal contact, thereby removing the possibility of presumed contagion. Rarely, I noticed nondisabled Cuencanos going out of their way to shake hands. I was told that shaking the hand of a disabled street person signifies explicit recognition of their “humanity.”

Reaching down to touch a lower stigmatized subject is another example of transgressing boundaries of “high” and “low” (Stallybrass and White 1986). One particularly creative

138 way that one wheelchair user uses to collect money is to hold a large fishing net out over curb as vehicles drive by on a busy street corner. Drivers and pedestrians alike can toss coins in the fishing net – a technique that avoids social pollution and efficiently collects spare change. My impression was that this technique maintains social distance between the giver and receiver while creating an efficient mechanism for drivers to literally toss money out the window.

Figure 9 includes a sample of small pamphlets handed out by people with sensory impairments. Sitting in any large plaza in Ecuador could lead to acquiring one of these brightly colored sheets of paper, which are distributed by people soliciting money in a very explicit manner. The pamphlets usually have four elements: a friendly tone, a prescriptive statement about how people with disabilities should be treated, a request for a voluntary donation, and a religious message indicating that both the giver and receiver of such donations are blessed. For example, the card on the bottom left can be translates as the following: “I am a disabled deaf-mute deserving of respect. Please help me – thank you for your understanding. May God Bless you and good luck.” By handing out these cards, the solicitor engages in an exchange where donated money is reciprocated by a small gift that honors each party in a Maussian fashion (Mauss and Halls 1990). 38

38 One potentially fruitful way to conceptualize the behavior of disabled panhandlers may invoke Butler’s (1988) notion of performative acts. If being disabled can be conceived as a phenomenon whereby gestures, clothing, and bodily actions constitute the category of a disabled person, learning to enact or rehearse being disabled makes more sense. I explore the idea notion that disability can be a “performative accomplishment” (Butler 1988: 520) more fully in chapter 7 in discussing how people learn new bodily techniques after acquired disabilities or being injured.

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As Williams (1995) suggests, there is an entrepreneurial aspect to the actions taken by disabled people enact as they panhandle. Having a disability increases the amount of money that one can earn in comparison to panhandlers without disabilities, and there is evidence from human rights monitors that parents are sometimes involved in either superficially or seriously injuring themselves or their family in a macabre attempt to improve their chances. This extra price that people offer could be called something like a charity price for goods. Often people will buy a caramelo (small piece of candy) for ten or twenty cents, which serves as a donation more than anything. The charity price is an artificially higher price given with the intent to help the seller. Several of the visually impaired people I spoke with mentioned that they had sold lottery tickets. A few explained that people were more likely to buy from blind rather sighted vendors, offering them a competitive advantage.

Increased amounts of donations accrue to people with more severe impairments, as one might imagine. Most people with disabilities do not pay bus fares; they legally are entitled to half-price fare, but in practice they are usually not required to pay. For instance, I can recall vividly a man who came on a bus I was riding in Cuenca who appeared to have a neuromuscular impairment. When he first entered the bus, I could hear his voice but could not see his body. As he moved into the bus aisle, he did so by

“walking” on his knees, slowly gazing at passengers and trying to collect money. I saw several people pull out coins, and then one man gave a dollar – or the equivalent of three bus fares.

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Conclusions

This chapter examined the dynamics involved in shaping how people with disabilities are treated in Cuenca. Building on the discussion of how disablement is produced by structural forces, this chapter explored how social constructions of disability are tied into social stigma and shame that are associated with bodily impairments, expectations of pity and charity, and cultural representations of need. While the framework of structural violence offers a useful starting place, Biehl’s resuscitation of the notion of social death presents a more nuanced conceptual framework for explaining the multiple meanings of disability and chronic illness in Latin America, including the struggles against abjection and shame. Whereas Biehl focuses on the profound abjection experienced by drug users with chronic diseases who are literally facing death, I examined how language and cultural representations about bodily difference selectivity track the boundaries between the abject and unmarked subjects. While disabled

Ecuadorians have become less likely to face a life of being sequestered out of sight, they have become more visible as abject citizens who are treated with stigma.

In chapters 3 and 4, I have established how particular types of agency are permitted or sanctioned in contemporary Cuenca. Legacies of vergüenza, neglect, and pity have been challenged by disabled people as they assert their right to full social membership. I have also suggested that people are selectively exposed to shame and neglect depending on their type of impairment and other forms of bodily difference.

These dynamics can be seen by examining how language is deployed, hierarchies are maintained between impairment groups, and how boundaries are transgressed. In the next

141 chapter, I look more closely into the microgeographies of disability by delving into the way that social spaces are made inaccessible or inclusive for particular bodies. I focus on spaces that are literally marginal – curbs, back entrances, ramps, staircases – as well as how public places are experienced differently by people with varying bodily capabilities.

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CHAPTER 5 – ON BEING DISABLED AND ‘OUT OF PLACE’ IN ECUADOR

Every fight for access (or against it) is also an interpretive space in need of theorizing since access is always tied to the production of daily life as embodied beings. (Titchkosky, 2008: 56)

Waiting at the entrance to a church, Claudia faced a familiar dilemma. Would it be better to wait patiently in the tour bus and avoid climbing a steep stairwell, or should she leave her wheelchair behind and ascend to the upper levels of the church with the rest of the group? The choice to dismount from her manual wheelchair and to crawl on her knees was one that she often has encountered in Ecuador. From the age of three, Claudia had been unable to walk due to an undiagnosed medical condition and as a result had been using a wheelchair for the last three decades. The presence of staircases usually means that she will have to crawl.

Although navigating physical barriers was nothing new, in this case Claudia felt extra pressure to join with her friends from SPD as they tried to get the whole group of thirty people together for a blessing at the top level of the beautiful, open-air church perched high on a cliff overlooking the village of Olón. After some cajoling, she climbed roughly one hundred stone steps on her hands and knees to join the other SPD members at the altar of the church. Claudia was able to participate in the collective accomplishment of a group blessing overlooking the ocean. She positioned herself right in the middle of our group picture.

By the time we returned down the steps, Claudia faced another dilemma. She was exhausted and in desperate need of a restroom. As the group of SPD members slowly

143 filed away from the church, Claudia searched around. Finding an accessible and reasonably clean restroom was a major concern when traveling. She found a restroom located at the bottom of short stairwell around the corner from the church. A helper scouted out the restroom, but Claudia decided not to go anyway since there were many steps and the facility itself was “too filthy”. She told me that she dislikes having to go to such “dirty” places, but often does not have a choice. She decided to wait despite her clear discomfort.

Claudia’s recurring dilemma usually involves either choosing not to participate in a given activity or putting herself into potentially degrading, humiliating, unsafe, or physically demanding circumstances, some of which involve spontaneous dependence on other people. In the case of the church stairs, the presence of a lengthy staircase meant that to ascend with the group would require a significant physical exertion and assistance from helpers to carry her wheelchair up the steps. In addition, Claudia had to deal with the public spectacle of “walking” on her knees. In trying to use the restroom, these dynamics were exacerbated by the uncleanliness of stairs leading down to it.

As Ecuadorians with disabilities have aspired toward increased participation in civic life, remains clear how urban environments have been designed for non-disabled users. Disabled people often must resort to using marginal facilities like inadequate restrooms. The use of “unclean” sites exacerbates the stigma attached to their disabilities by creating a sense that they are routinely exposed to unclean, contaminated areas.

This chapter considers the experiences of disabled people in highland Ecuador to examine the relationship between bodily differences and the social production of space.

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As Titchkosky (2008: 56) suggests, struggles encountered by disabled people for

“access” to places like public facilities, restrooms, and transportation systems are interpretive domains in need of analysis. Claudia’s encounter with physical barriers at the church is a typical occurrence in the everyday experience of having a disability in

Ecuador. I argue that many disabled Ecuadorians remain “out of place,” marked as bodies deemed deviant by local constructions of space (Douglas 1966; Sibley 1995; Cresswell

1997). Since their bodily differences prevent disabled people from utilizing spaces in a manner “proper” for non-disabled Cuencanos, their embodied alterity always makes them seem as if they are in the wrong place. The unordinary bodies of disabled people make them vulnerable to staring, and moreover create the inability to be inconspicuous

(Garland-Thomson 2009: 35; Scott 2012). Exclusion is produced through social interaction between different types of users, not simply through features thought of as part of the physical geography, such as curbs, stairs or other architectural barriers.

An important lens for understanding disability has emerged from urban anthropologists who focus on the spatial dimensions of human experience. In particular,

Low’s (2003: 10, 2011: 392) notion of embodied space provides a way to account for the cultural aspects of how people with disabilities encounter urban spaces. Building on anthropological theories regarding the notion of embodiment (Csordas 1990; Lock 1993),

Munn’s notion of “ mobile spatial fields” (1996: 451) and Lefebvre’s (1991) writings on the social production of space, embodied space refers to “the location where human experience and consciousness take on material and spatial form” (Low 2003: 10).

Theories of embodiment offer an avenue for interpreting the importance of spatial

145 orientation and physical limitations within built environments designed for able-bodied users. Built and social environments have been constructed for particular users and purposes that can reveal cultural assumptions about how space is governed and used by different bodies (McDermott and Varenne 1995; Rodman and Cooper 1995, Chappell

2010). For instance, steps and curbs are non-neutral methods of directing pedestrian traffic that constitute known barriers for people who use wheelchairs. Constructions of space designed for non-disabled people can create a disjuncture that causes a sense of hyper-embodiment in people who identify as disabled (Paterson and Hughes 1999).39

Whereas the previous chapter discussed geographic patterns such as rural/urban migration and the selective production of abject bodies, this chapter focuses on specific spatial practices. While notions of embodied space offer new opportunities for an engaged anthropology of place and space, little attention has been paid to disability in the context of spatial ordering of bodily differences. Studying disability from this theoretical perspective forces us to consider the interplay of urban design and bodily differences in places where social stigma and physical barriers reproduce patterns of spatial isolation.

This chapter demonstrates how spatial exclusion relates to the perception of disability as disorder in need of containment. I also discuss how social practices of transportation

39 Geographic research on disability has examined the spatial dimensions of physical disability, consequences of living with sensory impairments, and seclusion of people with mental health issues to examine the distribution of disease, the planning of social services, and patterns of social exclusion (e.g. Dear and Wolch 1987; Butler and Bowlby 1997; Dear et al. 1997; Kitchin et al. 1997; Kitchin 1998; Park et al. 1998; Butler and Parr 1999; Philo 2000; Chouinard 2001; Freund 2001) .

146 systems shape the boundaries between able-bodied spaces and terrain constructed as inaccessible. I conclude by presenting examples of how community-based groups have attempted to carve out inclusive spaces with Cuenca’s urban environment through collective action. These groups have brought public attention to disability in order to counteract the dynamics of shame and isolation discussed in chapter 4. This work centers on previously unseen boundaries between disabled, anomalous bodies and unmarked, non-disabled subjects in an effort to contribute to a discussion of embodied difference and marginality in Ecuador as articulated within a local spatial order. Organized resistance toward constructions of space that render people with disabilities as deviant has encouraged advocacy groups to assert their “right to the city” (Mitchell 2003). I also show how transgression of non-disabled conventions marks the boundaries between acceptable and unacceptable uses of space, which in turn rest on practices that contain and restrict social contamination of the social body by disease or bodily difference.

In many 21st century studies of disability, it has become somewhat outmoded to analyze accessibility and physical design issues, focusing instead on bodies and technology. I am sympathetic to these new areas of interest, but also found that physical barriers manifest on a daily basis for Cuencanos with disabilities. Physical access remains paramount in the lives of many people with disabilities in less developed countries. As I show in narratives that follow, disabled people have a markedly different experience of place (Rodman 1992) in Cuenca than people without disabilities. I focus on two critical aspects of physical barriers: material constraints on independent living such as architectural impediments, and challenges in transport (i.e. buses, taxis).

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Critically examining the effects of physical and sensory impairments on the spatiality of bodies requires what Mairs (1996: 60) labels the “radical materiality” of being disabled. Eschewing the notion of metaphorical versions of margins, Mairs suggests that marginality must be taken literally as “over here, on the edge, out of bounds, beneath your notice. I embody the metaphors” (Mairs 1996: 59). My analysis attempts to bring out both the literal notion of marginality offered by Mairs and the subtle forms of able-bodied privilege that lead to marginality in Cuenca.

Navigating Inaccessible Terrain on the Ecuadorian Coast

Look at what happened to us on the beach: how about if there would have been a little bit of forethought and they had made a ramp or a little path, like say to the ocean, and that's all, you know what I mean? It was just sand, after all. I mean, just put these things in parks … you know in my perfect world, there would also be ramps or paths for wheelchairs -- it really should be that way. -Claudia, 37

Key to an anthropological understanding of marginalization among disabled

Ecuadorians is an examination of how physical and social barriers operate in the lived environment. I illustrate the barriers faced by people with disabilities by describing the experiences of SPD members during their annual trip to the coast of Ecuador. Every year

SPD members and their families make a trip to Ecuador’s Ruta del Sol. The vacation involves swimming, eating seafood, singing karaoke, going shopping, and simply hanging out together in the sun. However, there is little that is simple about the trip: navigating physical and social barriers necessitates a high level of creativity, planning, and perseverance. As I heard discussed in the planning leading up to the trip, the group’s goal was to create an inclusive environment in the face of physical barriers. The overall

148 objective – to paraphrase a humorous slogan from the disability rights movement – was to ‘boldly go where everyone else has gone before.’ To do so required what de Certeau

(1984) calls “spatial tactics,” which in this case entails means of reacting to inaccessible terrain.

The fundamental inaccessibility of the built environment on the coast was readily apparent as soon as we arrived. The sheer amount of time that it took to move from place to place as a group was considerable. A range of physical barriers presented themselves at each location, ranging from sandy paths, stairs, steps, busy streets, and lack of bathrooms. To cope with these challenges, the group moved in waves with some serving as “scouts” and others as “helpers.” I joined in with family members tasked with assistance: lifting people in and out of the bus (which had four steep steps between the aisle and the ground), pushing people in wheelchairs, and walking with members with visual impairments.

As we navigated physical barriers, our slow-moving group elicited strong reactions from other Ecuadorians. Sometimes people who were staring curiously would suddenly offer assistance. Although such assistance was occasionally helpful, more often than not it seemed to add to the discomfort of both the giver and receiver of help. Such encounters entailed embarrassment and awkwardness, or what Davis (1961) calls the

“strained management of interactions” that arises when non-disabled people interact with those with visible disabilities. Similar to awkwardness experienced by Ximena when she used her cane mentioned in chapter 4, these interactions often made relatively insignificant issues into spectacles as people overcompensated with explicit chivalry. It

149 became clear that the presence of a group of people with mobility impairments was a confusing anomaly at the beach.

The visceral feeling of being marked as different from able-disabled Ecuadorians occurred most strongly on the third day of the trip when SPD members arrived at a beach in the town of Salinas determined to get as many people as possible – many of them wheelchair users – to experience swimming in the ocean. Carrying out the plan required a mix of irreverence, patience, and creativity as I describe here in detail. The first task in

Salinas involved locating a place to park our large touring bus – Salinas is a busy beach town with heavy traffic. After some negotiating with police officers, the driver carefully parked the bus right at the edge of the beach on a busy thoroughfare. SPD members organized in order to get the passengers off as quickly as possible. Disembarking at this busy location required a hasty version of our typical exit. Following the non-disabled members down the steps of the bus were people with mobility and visual impairments.

Last were those who use wheelchairs, and needed to either be carried down the steps or had to crawl or walk with assistance. For that activity, I worked with another young man to lift each person from their seat, down the steps, to their wheelchair and then up to the sidewalk. Figure 11 shows several SPD members at one of the beach stops, including two wheelchair users that were pushed down to the sand.

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From there, the next challenge was to ensure that each SPD member could make

it close to the water’s edge. Those group members with full ambulatory ability scouted

out good locations to sit, and then negotiated with vendors who sell space and umbrellas

to beach users. The most difficult obstacle we faced was finding appropriate ramps that

reached the sand since most entrances had steps. At one point, one wheelchair user said

that she was going to watch from the sidewalk but was eventually coerced into joining us.

To get the three wheelchairs users near the water, a team of two people had to carry the

occupied wheelchairs over the sand. A few strangers helped us, although their haste made

the task more difficult since they always seemed to move at the wrong pace. Once we got

to the sand, each person needed to get ready to swim. Since getting dressed is a

formidable challenge for many SPD members on a regular basis, preparing to swim was

similarly onerous. A paraplegic wheelchair user named Guillermo requested help in

Figure 10. Going to beach as a group

151 changing from his shorts to a bathing suit. I shielded his body with a towel for privacy, and then lifted him out of his chair so he could quickly pull down his shorts and pull on his swim trunks.

Several people appeared content to hang out and enjoy the warm sun and gentle breeze, but the more insistent members of SPD encouraged stragglers to join the group in the ocean. The group leaders made it clear that the collective goal was to get as many people as possible in the water. Together with some of the younger, non-disabled people,

I made repeated trips to and from the water to assist others through the sand.

During one of these trips between the water and the group’s tent I received a rude wake- up call about public mockery and disability. I was assisting Estuardo from his beach chair to the water since he was unable to use his two canes in the sand. As I guided Estuardo slowly down to the edge of the water, there were smiles all around. After all, we were in the midst of sharing the collective triumph of achieving a difficult goal: getting all of the

SPD members into the ocean. However, a sneering statement from someone passing by interrupted our progress to the water.

A young man with a ponytail looked at Estuardo and me, and then to the other

SPD members in the water. He then jeered in accented English, “I am sooo special.” At the same time, he made a gesture with his arm as though he had a palsy, perhaps an imagined characteristic of people with developmental disabilities. I quickly realized that he was openly making fun of all of us. Blood rushed to my face as I grasped for something to say in retaliation. I realized at that moment that he must have surmised that

I was a gringo offering charitable help to disabled Ecuadorians. His open mockery of

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Estuardo reminded me of the stigma that underlies the often excessive assistance that we had been getting during the beach trip.

What makes such direct mockery socially permitted, and what brought it out at the water’s edge? In trying to go swimming at the beach, SPD members were treading into a new space unused to accommodating people with visible bodily differences. Apart from the physical barriers – sand, lack of ramps, inaccessible parking to name a few – they also faced the stigma of putting their bodies in bathing suits and on display on the beach. Their embodied alterity became open to critique as the comments from the young man indicate – they had bodies that were “out of place.” SPD members had disrupted the able-bodied norms of the beach. From that point, I had a heightened awareness of the reactions from other people at the beach. Disability was not the only type of marked bodily difference: it was also true that the majority of the beachgoers appeared to be from the coast given their attire and speech; the beach also appeared to be a heteronormative space.

The SPD paseo presents an intriguing case because it unsettles common definitions of accessibility and physical barriers. Analyses of accessibility often focus solely on physical and architectural barriers without considering how cultural factors affect the use of space. The environment at the beach involves physical barriers traditionally considered to be part of the built environment but also terrains like the sand and ocean. In these challenging natural settings, stigma and face-to-face interactions as well as physical barriers can forcefully prevent or discourage the presence of people with bodily differences. Even when people gain access to the beach through creative tactics,

153 they are still treated as “matter out of place.” As the person who jeered at the group demonstrated, the attempt of disabled SPD members to experience in all aspects of a typical beach vacation led to boundary enforcement around the able-bodied space of the beach.

Although there were many social and physical barriers exposed, creative tactics were employed to deal with obstacles. In a setting where visible impairments cannot be easily disguised, the group was forced to confront barriers collectively. Having strength in numbers enabled the group to charter their own bus, get group discounts and re-create their supportive environment as necessary. On the other hand, a large group of disabled people constituted a collective violation of norms. Whereas single individuals with disabilities – supported appropriately by helpers and attendants – might be allowed in public spaces, an entire group of people with disabilities was more disruptive to the visitors at the beach.

On the first two days of the trip, some of the people who had never been in the ocean before had waded in or watched other swim with apparent anticipation. I overhead wistful comments about how amazing it would be to swim. Two of the wheelchair users were wheeled through the sand and were able to watch others swim from the water’s edge. A few of the de facto group leaders started plotting a method for getting people with no swimming experience into the water on third day. To accomplish these goals, a series of coordinated tasks would need to take place: parking and exiting the bus, finding a place to sit, preparing to swim, swimming, and then doing the reverse to get back to the bus.

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Figure 11. Inner tubes as a swimming aid

Our quest to include as many swimmers as possible proceeded. For one member, it took two steps: we had to lift him out of his wheelchair into a beach chair that stood in shallow water, and then into the gentle waves where his companions had inner-tubes waiting for him. The floating inner-tubes (shown in Figure 11) were invaluable for people who have limited use of their legs. In fact, these inner-tubes saved the day (much to the chagrin of the children that had been using them). I learned that in all the years that

SPD has been coming to the beach, very few members had actually gone in the water.

But on this trip, once people started swimming, we couldn't get them to share their tubes.

From the looks on their faces and the cheers of encouragement from their friends, it was clear that getting into the water was a special moment for those who had never had the experience of swimming.

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The full range of strategic teamwork came into play at a stop to visit the Catholic church at Olón where this chapter began. As we got off the bus, the people with mobility impairments and their helpers started to scout the place immediately to see how we could get people in and what the situation might be like. My role, and other helpers or scouts, usually entailed figuring out what type of surface passengers would encounter as soon as they exited the bus. At times, I walked out to examine where there might be an accessible entrance, a ramp, stairs, or perhaps places where people would need to be carried. Stairs made navigation challenging for people who used walkers or canes, whereas sand or gravel could present a barrier for the wheelchair users. In other cases, distance was the

Figure 12. SPD gathered at the church in Olón

156 main challenge – if the path required more than a few hundred meters, many people would find it to be not worth the effort. While many people piled out of the bus, others often remained behind to help and to encourage others to join the group. The peer pressure to join in made it difficult to strike a balance between making people feel included and pressuring them too much.

Nevertheless, after seeing that there were around twenty-five steps leading into just the lowest platform of the church, we decided to encourage two of the wheelchair users, Claudia and Guillermo, to climb up the stairs. Guillermo needed to be carried up – wheelchair and all – whereas Claudia walks on her knees and had her wheelchair carried up separately. When we arrived to the top platform, we were greeted by about fifty staring eyes from uniformed school children who were either visiting or went to school near the church. After a few minutes of appreciating the view, the leaders decided we needed a group picture (see Figure 12). After I snapped several photos, I was ordered to join the group so that I would be included in at least a few shots. A nun serving as our guide said a few words about the church, and then one of the elder SPD members led us in another prayer.

The attempt of disabled SPD members to participate in all aspects of a typical beach vacation led to a disordering of everyday socio-spatial interactions. First, accomplishing group tasks such as getting others to swim or disabled members into restaurants altered expectations about the possibility of increased participation in activities that were previously impossible. Along with personal achievements, teamwork among group members (between scouts, assistants, negotiators, etc.) enabled a wider

157 range of activity for individuals as the group adopted a “no member left behind” tactic.

Solidarity among the group was motivated by a collective desire to overcome the stigma attached to public performances of disablement and the physical barriers that prevent access to public places. This is particularly important at places like the beach, where visible disabilities cannot be easily disguised.

Along with positive effects of the collective approach, the differential constraints that individuals faced were magnified during the trip. I witnessed several breakdowns in solidarity as people with more severe impairments did routinely get left behind, were last to eat, or simply had to watch. I noticed the dynamic of those who were last in the group more acutely since I was always involved in getting them out of the bus, up curbs, and seating them at restaurants. Although in the end everyone nearly always ended up participating, occasionally it seemed like an afterthought more than a priority. For instance, quick stops to roadside markets usually excluded those with mobility impairments. Even in a group bent on maintaining solidarity some people are bound to be left to fend for themselves. For those who tire of asking for assistance, it is often easier to be left behind that to draw additional attention to oneself.

At face value, SPD’s goals were modest: they wanted to enjoy a trip to the beach in the same way as their non-disabled Ecuadorians. Accomplishing that goal in a social and built environment designed for non-disabled bodies made these goals extremely difficult – so much so that SPD only attempts this type of outing once a year. Their interactions offer a window into understanding disability in Ecuador since they stand out

158 as disabled highlanders visiting the coast. I turn next to examining accessibility issues in

Cuenca.

The Social Production of Steps, Stairs and Turnstiles

Physical space plays a fundamental role in creating and sustaining socially contingent notions of disability. Not only is physical space employed as a representation of the social distance placed between nondisabled and disabled, but in a dialectical fashion it acts to reaffirm and reify the boundaries between them. To be different is to be excluded; to be excluded is to be different. (Dear, et al. 1997: 474).

Social scientists have been successful at foregrounding seemingly neutral social formations as non-arbitrary through the ethnographic study of public spaces. In rethinking the spatial aspects of culture, ethnographers have explored how space is mutually constituted through bureaucratic means of social control and resistance from users of the urban environment (Rabinow 1989; Feldman 1991; Low 2003; Low and

Lawrence-Zúñiga 2003). The activities that take place in built environments are influenced by both the design and the manner in which spaces are transformed by their users. Low (1996) labels this distinction as a difference in the social production and the social construction of public space. Whereas the social production of space refers to political and economic forces that define how a particular location has emerged, the social construction of space deals with “social exchanges, memories, images, and daily use of the material setting” (Low 1996: 862). These theories offer a vocabulary for understanding how accessibility for people with disabilities is linked to social practices that help determine how spaces are experienced.

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Disability studies scholars and geographers have argued that people with disabilities face socio-spatial exclusion through inaccessible built environments and barriers to their participation in workplaces, schools, and public areas (Anderson 2005).

Imrie (1996: vii) calls built environments that prioritize the needs of nondisabled people a type of “design apartheid.” One label advanced by disability scholars is “disablism,” which inscribes the values of able-bodied society into urban form, constituted by social relations that oppress and constrain the daily practices of disabled people (Oliver 1990;

Barnes 1996).40

Kitchen and Law (2001) point out that many barriers that are often unseen or unnoticed by the able-bodied– like the ability to visit the toilet – represent significant constraints on the lives of people with disabilities. These approaches astutely point out that the built environment is inherently resistant to change due to its physical constraints

(Gray et al. 2003), and can render large territories of urban areas unexplorable due to physical obstacles (Hahn 1986).

The social aspects of the relationship between the built environment, accessibility, and disability have been explored by a handful of cultural anthropologists. As

McDermott and Varenne (1995: 327-328) explain:

40 See also Campbell (2009: 3-15) for a review of the conceptual differences between “disablism,” “ableism,” and “non-disablement.”

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In cultural terms the difficulties that people in wheelchairs (or city shoppers with carts, etc.) face with curbs and stairs tell us little about the physical conditions requiring wheelchairs or carts, but a great deal about the rigid institutionalization of particular ways of handling gravity and boundaries between street and sidewalk as different zones of social interaction. Consideration of how such small matters can be turned into a source of social isolation and exclusion is a good way to ask about the nature of culture as disability.

The form of built environments that has emerged historically determines to a large extent how space is used by people with varying bodily differences.41 Therefore, examining the form and shape of social and physical spaces offers a productive method for understanding social relations that may be missed by focusing on physical impairments alone as an individual issue. For many disabled people in Cuenca, these seemingly “small matters” are exclusionary forces that impede their participation in the public sphere, in the labor markets, and in community life. Meetings about accessibility held in buildings with no elevators, as I mentioned in the first chapter, offer an almost comical example of architectural barriers that limit civic participation.

Urban form and building design communicate particular messages about how space should be used. These “discourses of spaces” can be defined as linguistic and nonlinguistic images, figures of speech, judgments, design standards, plans, descriptions of imaginary places and events, experience, and feeling (Rodman and Cooper 1995: 591).

Seemingly mundane design choices such as the entry into buildings through steps or ramps create barriers to particular users. "Ramps in residential environments still seem

41 In a novel approach that combines architectural theory and ethnography, Holston’s (1999) analysis shows how the modernist underpinnings in the construction of Brasilia led to spatial paradoxes such as streets without corners and back-alley storefronts. It offers a clear example of how architectural features evolve over time through macro-level planning and the everyday strategies of residents.

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‘special’ to most of us,” Rodman and Cooper (1995: 156) explain, “while steps, for example, seem neutral." In contrast, disability scholars and others points out that steps are in fact are not neutral but enable entry for “unmarked,” able-bodied individuals to buildings while restricting access for those unable to climb steps.

Examining the use of the plaza space tells a story about the social relations of the city itself (Low 1996; Richardson 2003). Cuenca’s central plaza is called Parque

Calderón. As in many South American urban areas, the plaza is the symbolic heart of the city. The plaza dates back to the sixteenth century when Spanish colonists raised the city on the ashes of the Incan capital of Tomebamba. Parque Calderón is formed by four main streets and surrounded by several colonial buildings, including the sky-blue domes of the

Catedral Nueva, a massive church that dates to the 1880s. Cuencanos and tourists take advantage of its park benches, flowery planters, gazebo, and meandering paths. As the city’s central hub, the plaza serves as a site for protest rallies, holiday celebrations, political speeches, music festivals, and meeting friends. As in most Latin American plazas, it is the key site to watch other people.

On any given day, thousands of people might pass through the plaza. A small army of vendors sell newspapers, ice creams, religious artifacts, phone cards, and fresh fruit, among other items. People come to the park to get their shoes shined, watch others, and read the newspaper. Business people walk through the park on the way to lunch appointments, often jumping in and out of taxis. With their layers of brightly colored skirts and hats, women locally known as cholas pass through, often with a child in tow on

162 their way to one of the various markets nearby.42 Teenagers in school uniforms play around with each other with cellular phones in their hands. Old men dressed in formal suits chat and read the newspaper.

Parque Calderón is tightly monitored by ubiquitous men carrying lethal weapons

– city police officers, tourist police, the park security, and members of the Ecuadorian military. Unapproved uses, such selling particular items, drinking alcohol, or loitering are selectively prohibited. Adding to the deterrent of implied physical force, other more subtle forms of control exist. The older gentlemen exercise a watchful eye over teenagers and vendors. Parents keep close tabs on their children as they run through the plaza.

Disapproving looks and occupation of space maintain the social order of the plaza. Uses that are not allowed in Parque Calderón, but take place nearby, also tell a story. Selling flowers, certain types of goods, and using the bus all take place close by but not within the plaza. Likewise, the illegal sale of narcotics is known to take place a few blocks away to the southeast. Day laborers gather a few blocks southwest. Like any city, specialized uses of space occur in patterns shaped by interventions from broader economic, interventions by local authorities, and practices that have accumulated over time

(Lefebvre 1991: 26).

42 The term chola is a term in Azuay that refers women who adopt a shared set of attire such as polleras (distinctive pleated skirts), panama hats, and braids and are often depicted as urban peasants who have retained their “traditional” lifestyle. For a discussion of the complex meanings of cholas in Cuenca in the context of sexuality and race in Ecuador, see Weismantel (2001: 18- 40). Pribilsky (2007) also discusses the range of often contradictory terms used for ethnicity through the Azuay-Cañari region.

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A person with a disability experiences the plaza with a particular lens. For someone with a mobility impairment, there are both impediments and accessibility aids.

Ramps line each of the corner streets, and unlike most of the city, the wide sidewalks leave plenty of room for wheelchair users. On the other hand, when it rains (which is often), the beautiful tiled walkways become dangerously slippery. The bustle of users makes navigation during the busy parts of the day treacherous. Vehicular traffic is constant, and there are no auditory traffic signals. Sidewalk vendors crowd the walkways.

Frequent construction makes sidewalks impassable.

Material constraints to independent living

Without a doubt, architectural barriers impede the ability of disabled Cuencanos to transport themselves throughout the city. Throughout my interviews, I heard countless reports of how steps, inaccessible restrooms, lack of elevators, curbs, drains, ramps and other physical barriers either impeded mobility or prevented access. Since such themes were obvious, after a while they constituted an ethnographic question that almost did not need to be asked. Rather than describing these in detail, I focus in this section on how my informants viewed the relationship between physical obstacles and cultural practices with selected examples that were most common. If physical access to cultural terrain is a prerequisite for societal participation (Charlton 1998; Gray, et al. 2003), their narratives indicate that material barriers cause persistent problems that prevent meaningful social, economic, and political activities.

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For example, Rolando, a fifty-five-year-old university professor of medicine, had used crutches and wheelchair for most of his life due to the effects of polio that he contracted when he was five. When I spoke to him at a university café, Rolando pointed out that architectural issues are still paramount in Ecuador, and that it was “impossible to be self-sufficient for people with physical disabilities, and less so for the blind and others.” In his eyes, emphasis on physical access issues should be maintained since one cannot participate if they are not present. Rolando told me a story about how physical access and what he derisively called “procedures” often work in tandem. He sings as part of a chorus, and was trying to join his group during the annual Independence Day festivities in a large plaza (La Plaza Grande) in Quito:

As you know, there are rivers and rivers of people there that fill the entire downtown area. I was there when it was full, and so I went to the city hall to request a pass to enter with a car so I could sing with the choir. Their solution was to call the director of our chorus and to scream at him that he should go to hell for having included a disabled person, and how could they possibly get to a place with so many people … It’s obtuse thinking, close-minded and so it’s hard to know what to do when the authorities have this type of thinking – we have to eradicate it.

Thus, instead of trying to find a solution to the problem, the city officials blamed the director of the chorus and implied that such people ought to be excluded from participation because it is too difficult to give them access. “Following procedures” is presented as the only solution, which frames the issue as one of rules rather than of personal accountability. The situation is a reminder that the first time disabled people participate in something it is often the worst since no one has even thought about inaccessible space as a problem. City officials have the power to prevent the spectacle of

165 disrupting the present order by allowing vehicular access by a disabled citizen. In this case, the city has the ability to exclude disabled citizens with impunity and rigidity.43

Rolando finished his story by emphasizing that it is only through living with an impairment that (non-disabled) people will eventually understand his plight: “It’s just until one of them breaks their legs and starts to live in their own body, even for fifteen days, that they will become aware and that things will start to change.” Rolando was pessimistic about the ability of people to change simply for altruistic reasons unmoored in personal experience. For him, the only “true” way to understand how these barriers operate was through one’s body. Although Rolando didn’t specifically use the term

“design apartheid,” in effect he was getting at the same idea; he clearly pointed to the exclusionary treatment disabled people receive in terms of the practices that perpetuate ableism.

The shift from being ignorant about disability issues to understanding accessibility in a more reflective way can occur when non-disabled individuals spend time with people with disabilities, as I discovered in an interview with a physical therapist who works with SPD. Diego, who had worked for SPD on a volunteer basis after fulfilling his internship training hours in 2007, described how prior to working for

SPD, he simply thought it was just about “giving up one’s seat on the bus” or other similarly basic activities. Later, he realized that the entire city is “maladapted” for people

43 Harriet McBryde Johnson’s (2005: 109-132) attempt to participate as a delegate from South Carolina in the 1996 U.S. Democratic Party convention as a wheelchair user offers a particularly vivid illustration of the extent to which disabled people are marginalized afterthoughts subject to second-class treatment.

166 with disabilities. “The fault lies with our culture,” Diego reflected, “and it is only recently with national campaigns that people are becoming more conscious about the needs of disabled people.” Diego’s exposure to more nuanced experiences of disabled people at

SPD broadened his perception of the sociocultural dimensions of marginality.

Many people pointed out that creating a more accessible city involves more awareness on the part of non-disabled Cuencanos. For instance, the ability to move around the city depends on treatment from drivers and pedestrians; the notorious refusal of Ecuadorians to follow traffic laws was noted by many informants. That this is a national issue is recognized by the Correa administration who attempted to deal with what they labeled as a “culture of disrespect” for traffic laws by including comprehensive reforms to vehicular regulations in 2008. The disregard shown toward pedestrians is far more consequential for people with disabilities given their mobility limitations.

Even seemingly minute aspects of the built environment can be challenging for people with mobility impairments. The idea surfaced during an interview with Beatriz,

25, who was relatively new to SPD. Beatriz was born with Achilles tendons that prevented her from walking properly. She was told that the condition was caused by ineffective pre-natal care. Despite multiple operations and physical therapy, her ability to walk had improved little since she was a child. As we talked more, Beatriz focused on the stigma attached to being called a cojita (lame) as well as the role played by architectural barriers that most people take for granted. She explained that even sewer grates, potholes, and unfinished pavement can render her unable to use the streets; construction makes things worse. If the expected form of the built environment of Cuenca gives disabled

167 people trouble, unexpected changes due to the frequent construction projects make life that much more difficult. This can be discouraging, Beatriz pointed out, because if she is not with someone who can help her, she simply has to go back home or call for help from a stranger. As I witnessed in 2008, these construction projects often last for months, start and stop unexpectedly, and made streets and sidewalks less accessible, even for people with no mobility disabilities. For people with visual impairments who rely on memorizing routes and methods for getting around, construction projects can make path- finding next to impossible.

Physical obstacles can also limit participation in family life such as picnics or hikes. At times, family members lack understanding about how something as seemingly insignificant as potholes or gradual slopes might deter a disabled sibling from participation. Beatriz revealed that as she had gotten older, she felt even more excluded since she tired easily and required someone to scout out areas before the family could go somewhere. She lamented that even her family thought she was a “crybaby,” and that she had fallen and cried so many times on family trips that she had recently been more likely to simply stay home. No matter how insignificant they may seem to nondisabled family members, these “small matters” often prevent enjoyable experiences. The gulf in empathy between Beatriz and her siblings fuels a vicious cycle between physical impediments and stigma. Beatriz’s siblings resented her inability to participate, and blamed her for bringing difficulty and shame to the entire family.

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Public Transportation: Using buses and taxis

Transportation-related issues constitute one of the most persistent and expensive barriers that disabled Cuencanos face on a regular basis. Only one in nine residents of

Azuay owns a car44. Since a majority of disabled Ecuadorians fall into the bottom two income quintiles, it can be safely assumed that their rate of vehicle ownership is considerably lower; owning a car is a privilege that few can afford. Public transportation or ride sharing is a common strategy. Most people I interviewed use either the bus or taxis as their primary modes of transportation.

Riding the local bus in Cuenca can be challenging for disabled patrons for several reasons. First, safety is a constant concern since bus drivers operate in a way that is fashioned for young, able-bodied passengers. Ecuadorian buses customarily do not completely stop when they pick up and drop off patrons, but tend to merely slow down.

Since profits derive from the quantity of riders, bus drivers have an incentive to operate quickly and with limited concern toward safety. To ride the bus, you must be able to flag it down and occasionally jump onto a moving vehicle; if you have a visual impairment, the bus driver must notice you. At times, the bus assistants fail to adhere to the legally required discount, and often do not adhere to preferential seating. As I witnessed several times, disabled Cuencanos must often go to extreme measures to flag down a bus and put themselves at considerable risk by ascending steps with their canes or walkers as the bus is still moving.

44 The Ecuadorian National Transit Commission reported the rate in 2005 as 114 vehicles for 1000 people.

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Figure 13. Turnstile at bus terminal

Barriers to accessible transportation extend to the built environment as well. For instance, the regional bus terminal has been criticized for its system of revolving metal turnstiles that prevent many patrons with mobility impairments from passing through with walkers or wheelchairs (see Figure 13 for an example). The city has also purchased a local bus with a wheelchair lift, but I was told that it was yet to be put into circulation.

There are significant gaps between public commitments to accessibility and the actual provision of accessible transportation for disabled patrons.

During 2008 and 2009, a debate over accessibility in public transportation erupted. Local newspapers captured the controversy in articles pitting the head of the

CONADIS office in Cuenca, Daniel Villavicencio, against local officials. In August

2008, the transportation department announced that it was creating “the largest social

170 inclusion project” in the city’s history (El Mercurio, Aug 27th). In addition to the half- price fare for disabled people, it claimed that the new collapsible turnstiles would make the bus more accessible. Villavicencio countered by saying that turnstiles, collapsible or not, are nearly always a barrier for people with mobility impairments. The turnstiles were not an accessibility aid, but rather a more efficient way for collecting fares that would inevitably make it more difficult for disabled patrons to get to their seats.

Within three months, the debate intensified as CONADIS publicly denounced the city for failing to fulfill its obligations. Two SPD members informed El Mercurio that they were unable to use the bus at all due to their disabilities. The new method of requiring passengers to enter solely through the front door precluded people from using the lower back door as they had in the past. Moreover, the buses with wheelchair lifts promised by the city were not in circulation. Disabled patrons also suggested the custom of not coming to a stop or offering assistance had not changed since the city’s announcement of its social inclusion project. The main response from the city was blaming the Korean company responsible for installing the new fare-turnstile system, a seven million dollar project it had approved.

In June 2009, the controversy took a surprising turn when a federal judge ruled that the city was in violation of Ecuadorian law by installing the system of turnstiles on the buses. The court ordered the city to remove the turnstiles within ninety days. These actions escalated the debate as Villavicencio squared off against the head of the transportation department, Patrick Segarra. Segarra argued that people with disabilities account for just 0.2% of riders, and that turnstiles exist in other places without complaint.

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Bolstered by the court action, Villavicencio fired back: “That's simply a way of minimizing disabled people, a way to justify the irresponsibility on the part of transportation officials.” He refuted the official figures by pointing out that there would clearly be more disabled patrons if buses were more accessible. Moreover, Villavicencio explained that they had been trying to make supermarkets, churches, sports arenas, and other public places accessible since 2006 and that they “would not give up.” He argued that the absence of past complaints cannot be used as a justification for continued discrimination. However, despite the actions of the court, when I returned in 2010 the turnstiles were still installed on many city buses.

Marked and Unmarked Subjects and the Temporality of Access

In terms of corporeal abilities, the generic citizen in Ecuador is assumed to be ambulatory

(without the need for mobility aids), capable of seeing, and able to hear. A marked category designates a minority identity within a system where the unmarked is the dominant, generic identity (Walker 2001: 14). Similar to systems of white, male, or heterosexual privilege, a system of privilege based on bodily differences assumes an able-bodied subject to be the unmarked universal. In terms of disability discourse, individuals whose identity is constructed as marked are in need of special accommodations: Braille methods for reading, ways of accessing elevation changes such as elevators instead of stairs, zero-grade entrances (that are usually located in the back of the building), etc. As I discussed in chapter 4, their marked identity tends to lead to spatial segregation and differential treatment as compared to able-bodied Ecuadorians.

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Although physical barriers to access have improved over the last few decades, they continue to constrain the ability of disabled Ecuadorians to participate in activities that non-disabled people take for granted. During the course of interviews, I detected a disjuncture between the way that people spoke of the past, present, and future that was replicated in terms of accessibility issues. As I outlined in the previous chapter, the past was constructed as a time of backward thinking, restrictive barriers, and close-minded ideas about minusválidos (“the handicapped”). In contrast, people were optimistic about the future, and spoke about how social and mental barriers were very important in thinking about disability. They often imagined a future world (most often five, ten or twenty years away) where architectural constraints would be lessened or even non- existent. Yet even though many people pointed how much progress had been made since their childhood, their everyday descriptions of getting around in Cuenca involved an impressive array of impediments. Moreover, observing barriers that disabled Cuencanos face in practice led me to believe that their ideas about the future might be overly optimistic. They seem to have an almost teleological belief in a more accessible future

(see also chapter 6 on the state as agent of promoting “progress”).

An example of how access is linked to temporality arose during a discussion about hailing taxis in Cuenca. For people without access to a car or who are unable to ride the bus, taxis provide an alternative. Taxis are ubiquitous in many parts of Cuenca.

In recent years, taxi drivers as a whole have improved considerably in terms of serving disabled patrons, but that was not always the case. Norberto, a wheelchair user in his mid-30s, explained that fifteen years ago it was quite different. “It was complicated,” he

173 said with a sigh. “Taxis always would say to you: ‘are you with someone’? When they would say no, the response would be that they cannot give you a ride.” According to

Norberto, taxi drivers treated disabled people as children or dependents and assumed that they had no money to pay. If they accepted the fare, the drivers often belittled people with disabilities by forcing payment upfront, or solely speaking with their non-disabled companion. Others told me that they still get ignored by many taxi drivers who refuse the hassle of putting wheelchairs or mobility aids in their trunk.

Unequal access to transportation reproduces economic stratification since employment and social opportunities are linked to the ability to move freely throughout the city. Using taxis is expensive for those whose incomes are often not more than a few dollars a day. Although taxi rides throughout the city are fixed prices between $1-2, round trip fares represent a luxury for many disabled Cuencanos. This forces people to either find ways to carpool or to try to negotiate for lower prices with drivers. A few people told me that the cost of having to use a taxi prevents them from holding jobs since it makes it uneconomical.

Norberto also suggested that awareness about disability that impacts accessibility to transportation stemmed from what he called “cultural sophistication.” He invoked the differences between the treatment of disabled people in Quito as a way to demonstrate how modern ideas had not reached Cuenca. He claimed that disregarding traffic laws has to do with ignorance and a general lack of courtesy:

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It has to do with the level of education, I think, because in Cuenca it was more closed- minded toward people with disabilities. If you were going out and asked someone to help you go down stairs or something, people were surprised or were afraid that you would fall. But these days, people say, ‘Wait and I will help you.’

As compared to Cuenca, Norberto suggested that people are more open in Quito. “In the capital if you see someone is going to cross the street,” he explained, “then people will stop the car and let a disabled person cross, but in Cuenca they still don’t do that – even now, they don’t respect you.” Although things are getting better over time, much work remains to be done in Norberto’s eyes. These sentiments indicate that accessibility is predicated not just on physical structures but on human practices that vary in both space

(rural-provincial-urban) and time (past-present-future).

People I interviewed were keenly aware of how power plays a role in where and why spaces are made accessible in Ecuador. Disabled foreigners encounter a different terrain of accessibility than do most Ecuadorians. In the tourist zones of Cuenca, Quito, or the Galapagos Islands that are designated by UNESCO as World Heritage Sites and thus capable of attracting wealthy foreign tourists, accessibility has been a high priority.

Disabled foreigners are permitted access to spaces that many disabled Ecuadorians are not, and encounter urban spaces with a much higher level of accessibility. For instance, the main port of the Galapagos, Puerto Ayora, has fully accessible curbs, sidewalks, and street signals. Since UNESCO specifications demand at least minimal accessibility, the creation of tourist spaces has led to some spillover effects that indirectly benefit

Ecuadorians.

Inaccessible public transportation, uneven taxi services, and an array of physical barriers make it difficult for disabled Ecuadorians to render many spaces as meaningful

175 in their daily lives. Meanwhile, mobility is a prerequisite for being socially involved, participating in politics, receiving government benefits, and accessing health care. With these challenges, what strategies have been used to adapt to spatial barriers?

The Social Construction of Accessible Space

In reality, discrimination continues but on a more latent level than in the past. In the biggest cities in Ecuador, like Quito, Guayaquil, and Cuenca there are ramps in the streets and ways of accessing public transportation, but only in the central areas, or in other words, where the tourists go. The work at hand is to extend access to all of the towns, with ramps in all of the locations, public and private. Miguel Trujillo, wheelchair basketball player (Zavala García 2007)

If the accessibility of the built environment is profoundly influenced by design issues, it is equally affected by the way that users experience space. The words of Trujillo above suggest that the social production of accessible spaces has proceeded in particular places where tourists visit, but has not been extended to other parts of Ecuador. The appearance of accessibility can mask continued discrimination in less apparent areas.

Historically, the social production of urban space in Cuenca was intended to meet the needs of elites rather than to promote access to all its residents. The legacy of the hacendados (owners of large estates) and church rule meant that land use and architecture was tightly controlled along with access to space (Brownrigg 1972; Hirschkind 1980).

Thus, marginalized groups have had to fight for their ability to participate in certain spheres of life.

In challenging social norms outlined in chapter 4 that suggest disability is something to be hidden, Cuencanos with disabilities are asserting their “right to the city”

(Lefebvre 1996). Whereas in a previous period, many people were fearful or unable to

176 venture into public spaces, they are now turning legal rights into new formations of urban space that challenge historical patterns of exclusion (Mitchell 2003). This newfound sense of entitlement has begun to shift disabled Cuencanos into active shapers of space rather than passive targets of exclusive practices.

In this section, I examine how three different spaces are constructed in Cuenca: private, public, and semi-private/community-based. These are not hard and fast distinctions, but help us understand a multitude of strategies for adapting space in

Cuenca. Private spaces include homes and businesses. Public spaces include sites such as streets, plazas, schools, churches, and athletic facilities. The spaces at community-based organizations and churches make up semi- Figure 14. Low-cost wheelchair made with plastic base private or community sites. In addition, I describe some of the creative adaptations that people use to get around inaccessible terrain. I show how SPD, ANA and the wheelchair basketball players have created social spaces often call their second family or as a “home away from home.” In contrast to highly visible forms of protest, such as rallies or parades, these spaces offer a refuge from the otherwise inaccessible environment.

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Within this discussion of accessibility, I do think it is important to note how technical devices are used to ameliorate bodily impairment. Although my argument in this chapter focuses on environmental barriers rather than adaptive technology used by individuals, the statistics below offer background data. According to CONADIS (Cazar

Flores, et al. 2005), one quarter of people with severe disabilities in Ecuador utilized some type of technical aid or equipment; a slightly higher percentage of urban dwellers use technical aids. Nine percent of people with visual disabilities use aids, including

Braille equipment, canes, software, and corrective lens. CONADIS notes that 17% require such equipment to see, which suggests that about half of people with visual impairments lack equipment to be able to function. For those with mobility impairments, the need also outstrips the use of technical aids. Although 19% indicate that they need some type of aid to be mobile, only 11% percent actually use such aids. Common aids include canes (41%), wheelchairs (38%), crutches (17%), walkers (15%), adapted vehicles (3%) and a variety of artificial limbs. These figures demonstrate a significant gap between the need for technical aids and the level of usage.

Although personal strategies for dealing with bodily impairments are an important part of dealing with accessibility issues, they can deflect attention away from the production of inaccessible spaces. They place the onus of change on the individual rather than looking at broader ways of using space that exclude people with particular types of bodily differences (Barnes 1996; Shakespeare and Watson 1997). In doing so, they detract from strategies that emphasize changing the built environment itself.

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On the other hand, urban design that tries to address accessibility issues can fail to meet the needs of actual users. The only situation worse than not making public spaces accessible is when modifications are made poorly and therefore not used. I witnessed several examples of this phenomenon including one incident when I was heading to a disability rights rally and watched a pair of wheelchair users in front on me moving down one of the largest streets in Cuenca, Huayna Capac (see Figure 15). I noticed that they were rolling along on the right side of the right lane, hugging the curb.

Figure 15. Navigating a busy arterial street instead of using curb cuts

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Rather than having curb cuts on the street corners, the curb cuts were located facing the main avenue which meant that they have to put themselves in danger in order to go up and down the curbs. Along with the state of disrepair of the sidewalks, this deterrence dissuaded them from using the sidewalk at all in favor of the street. It was a dangerous example of adaptive strategies for dealing inaccessible paths. As some public efforts at creating accessible design have failed, people with disabilities have been forced to construct their own solutions.

Resisting, Avoiding, and Reconstructing Able-bodied Space

I came to understand how wheelchair basketball was played in Cuenca through serendipity. My friend Norberto had invited me to watch basketball practice and perhaps interview the players, and he picked me up around sundown. When we arrived at the

Coliseo Jefferson Perez, the main indoor arena in Cuenca, nine players were available to play. Most had driven their own cars (which suggested a socioeconomic status more stable than many SPD members), and joked around as they lifted themselves out of the front seat around to the back of the vehicle and into their wheelchairs. I helped open a heavy sliding door into the arena, and then laid a large ramp across the stairs into the main court. As I found out, there are some tasks in getting ready to play that either require people who do not use wheelchairs or are made easier by their assistance.

Nine players warmed up on the basketball court by strapping themselves tightly into their specially adapted athletic wheelchairs. As they stretched, passed, and took some shots at the hoop, I could see that they ranged in age from those in their early 20s to their

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50s and had varying levels of ability to push and shoot. While I was holding my notebook and camera with a sense of anticipation, two people asked me if I wanted to play. Me?

Really? Since they needed one more player, I agreed to help them make it an even game of five on five. Playing a sport like wheelchair basketball requires a complex coordination of bodily practices that cannot be easily emulated. In addition to the difficult to shooting, passing, and dribbling while simultaneously pushing a wheelchair, rules and strategies particular to the sport make it difficult for novices to handle. I left the practice with blistered, sore hands and a much better appreciation for the difficulty involved in playing a team sport from a wheelchair.

For many athletes, simply describing the fact that they are able to play competitive sports shatters commonly held-beliefs about the limitations of having a disability. As Francisco told me (the factory worker described in chapter 3 who had the mining accident), attitudes toward disability change when non-disabled people see disabled athletes actually playing sports. When people haven’t seen them play, they are doubtful. “I met one person who was sure we were going to kill ourselves,” Francisco told me with a measured grin, “and others who are scared to death that we’ll hurt ourselves, but we fall and we get up and we’re happy.” Although they may do things a little slower or with more difficulty, his point was that they want to be seen like everyone else. Disabled athletes frequently dispel the myth that their experience is fundamentally different from other types of athletes.

Although he often gets asked how he is able to play, people are generally impressed when they witness games or practices. Francisco thinks that being disabled is

181 slowly becoming something that is thought of as normal, but that there are still many barriers being “broken or removed.” Francisco said that the confidence gained through playing basketball has encouraged athletes to venture into other social activities such as going to clubs, restaurants, and parties in Cuenca.

Playing sports in public has gradually improved the image of people with disabilities in Cuenca, according to Norberto. Team members have been seen in the local newspapers and occasionally are recognized on the street by strangers. Norberto links increased public awareness to the change in attitudes that he has seen in the last fifteen years. Whereas fifteen years ago people would offer him unsolicited money on the street, now they treat him with more respect. Disabled athletes and a handful of other disability activists have taken it upon themselves to directly challenge the system of able-bodied privilege in Cuenca.

Private and individual means of creating accessible space

One strategy for enabling family members to more fully participate in social life has been through solicitation of private resources. In some cases, families receive donations from local, national, or international institutions. For instance, many disabled

Cuencanos have received wheelchairs and hand-crank tricycles through the non- governmental organization Acción Católica (Catholic Action), which in turn receives donations from a Canadian foundation. Other families have raised funds through public solicitations, often through church fundraisers or newspaper articles. With the limited

182 safety net offered by the state, the burden of enabling their disabled family members to function falls on squarely on the family.

Wealthy families have enormous advantages when it comes to creating an accessible life for their disabled children. In contrast to wealthy families, people with disabilities from Cuenca’s middle and lower classes often lack means to handle spatial barriers. They often make use of donated equipment and have to devote sizable expense to getting around. The majority of people I spoke with were members of what Hirschkind

(1980) calls the Pueblo Pobre class, many of whom are involved in manual labor or blue- collar job. A good representative of this group was Estuardo, who served as president of

SPD and participated in the beach trip. Estuardo worked as an artisan who was producing athletic clothing. His family owned a house away from the central part of Cuenca, and he relied on two domestic workers to help him with eating, cleaning, and light housework.

Estuardo relied on taxis or rides from friends because his mobility impairment prevented him from driving or taking the bus. After staying with him on a few occasions, I learned that prior to 2008 Estuardo depended on his parents to help him around the house. Since they went to live with his sisters in Chicago, U.S., he had been forced to hire workers who both helped him with his business and shared in housework tasks. Although

Estuardo would be unable to function without assistance, he lived a more or less independent life by paying for personal assistance. His ability to run a profitable business was undercut by the cost of transportation and domestic assistance.

Several SPD members who were able to afford private cars had adapted vehicles allowing them to drive with their impairments. People without use of their hands or legs

183 need vehicles with automatic transmissions. Since automatic transmissions are rare in

South America, appropriate vehicles must be imported and require costly adaptations.

Saving up the funds to pay for such vehicles can take a decade or more. Those with family members in Europe or the United States occasionally were able to acquire vehicles more easily. With limited family resources, many Cuencanos turn to community organizations for aid.

Constructing accessible community spaces

When I asked members of community organizations what the group “meant to them,” by far the most common responses referred to idea of a “second home” The environment produced by these community organizations generates feelings of belonging, comfort, and confidence. In speaking with members about the significance of the community organization in their lives, I heard terms like “family-like support,” and “a second family.” They often cited compañerismo (friendship) as the single most important aspect of their social involvement.

People refer to these community organizations as second homes in part due to the lack of physical and social barriers at facilities. For instance, ANA’s community center is comprised of several offices, workshops, and apartments. Its walled compound was converted from a primary school campus, and has provided a set of structures that have been modified for people with visual impairments.

Residents and ANA members have memorized the grounds to such a degree that they rarely use canes or other assistive devices that are necessary outside the walls. One

184 member explained that since their perceptual world with limited or no vision is so different from the sighted world, ANA represents the sole place where they can feel completely at home. Even more than their family homes, they feel comfortable joking and socializing without being concerned about the actions of sighted people. While they live in homes that have been adapted and memorized, the social support provided by other novidentes and design of the environment cultivates a sense of belonging that can missing for some at their primary home.

SPD members likewise view their community space as a second home. From participant observation, I came to see the social and geographic space in which social interactions took place as a uniquely supportive environment. SPD represents a place where people can be themselves. This means that unlike their experience with non- disabled people, their peers do not treat them with pity, awe, or condescension. The community center where SPD operates serves as a safe place for people with disabilities to work, meet, and socialize.

Gifted by the municipality of Cuenca a few years earlier, the building is located next to a park outside the central part of town. It consists of two rooms: one room subdivided into an office/meeting space, and a space for producing clothing as part of

SPD’s nascent micro-enterprise project. The other room is a gymnasium mostly used for physical therapy. The center promotes a positive view of disability, as evidenced by large, brightly colored signs on the walls. One yellow sign with flowers and butterflies reads: “Tu presencia es un regalo para el mundo. ¡Eres incomparable!” (Your presence is a gift to the world. You are beyond compare.) The site also includes a basketball court,

185 and is accessible for people with mobility impairments. Monthly meetings offer a chance for the organization to conduct business, but even more importantly, to socialize. During my fieldwork, there were several thematic meetings including a Mother’s Day Catholic mass, an informational meeting on psychological counseling, and a salsa dancing party.

Holding these gathering at SPD ensures that typical Cuencano activities can take place in a barrier-free environment.

Although they are sites of resistance to disability oppression because they decrease isolation, these groups simultaneously reinforce the notion that their meaningful social interactions take place apart from the public sphere. I heard SPD leaders reflect on the need for their members to engage in more public social action. I also discovered there is not necessarily cross-disability awareness of accessibility issues. Estuardo, president of

SPD, told me that he had been unable to attend a meeting that ironically took place at

ANA. Since there is no elevator at ANA, the second floor meeting was inaccessible to those who cannot use stairs. Estuardo was disappointed that the inaccessible

“accessibility” meeting took place at another organization within the wider disability community (the issue of challenges to cross-disability solidarity is discussed in the next chapter).

As these examples show, disabled people have been proactive in using technical adaptations and deliberate strategies to impact the social construction of space in Cuenca.

Families, community organizations, and those with the power to shape perceptions like wheelchair athletes have tried to adapt the environment in ways that subvert the original architectural design and disrupt the dominant conventions of able-bodied spaces.

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The Phenomenology of Conventions

“When an artifact or event moves from being presumed neutral to being a marked object- whether in the form of a gradual market shift or a stronger one such as barrier-free architecture for those in wheelchairs or deaf-signing for the evening news- the nature of human encounters with the technologies embedded in them may change. This is one form where politics arise in connection with technology and technological networks.” (Star 1991: 36)

In thinking about how atypical embodiments can be disruptive, Star’s approach encourages us to reflect on how multiple marginalities are constructed from mismatches between standard systems of technology and marked subjects that do not meet the requirement of the system. Star illustrates how simple incompatibilities, such as in her example of being allergic to onions, point to the way in which conventions have invisible beneficiaries. These insights offer a broader framework for conceptualizing how marginality stems from systematic incongruencies across situated technological networks.

Although exclusive practices may manifest as physical barriers, they often stem from regulation of cultural difference and societal fear of alterity (Sibley 1995; Dear, et al. 1997). Kitchin (1998) argues that most spaces are organized to keep disabled people in certain places, but that they are paradoxically always ‘out of place.’ Ignorance, indifference, and social attitudes about proper ways of using space are unconsciously reproduced through the dominant views that make disability deviant. Through violations of expected conduct and the strained interpersonal interactions that result, like those I observed on SPD’s paseo, disabled people often create unease and embody moving fields

187 of social stigma. As discussed in chapter 4, fears of contagion amplify these effects, particularly in interactions between disabled and nondisabled individuals.

Nowhere is this clearer than in the interactions between disabled and nondisabled individuals. To analyze these interactions, I found it helpful to combine Kitchin’s (1998) insight that disabled bodies are typically constructed as deviant even within accessible places with Nancy Munn’s paradigm of excluded spaces. Munn argues that bodies ought to be conceived as mobile spatial fields (1996: 462), and that consequently, spatial boundaries have to take into account human embodiment. Here I draw on Munn’s objective to approach the issue of spatial taboos as a subset of more general anthropological “puzzle” of social space (1996: 446). Munn’s emphasis on the “spaces of deletions or delimitations” (448) explains how certain places are restricted by custom, events, or the personal history of specific individuals, which I find highly relevant to discussions of spatial an cultural exclusion of people with atypical bodies in specific environments.

I witnessed several examples where an “exclusive space” was created by a combination of the bodily requirements of particular impairments (such as using a walker), the constraints of the environment (lack of continuous sidewalks), and reactions of other pedestrians (such as displays of discomfort or excessive aid). Another example might be the example of a line of people with low vision walking down the street. The moving spatial fields of blind people using canes can upset expected social interactions of sighted people. Blind cane users are often treated with relaxed limits on the way their bodies are permitted to move (i.e. bumping into other without sanction) but also can be

188 intentionally avoided by sighted people. From speaking with ANA members, perceptions of stigma affect their cognitive map of the city – for various reasons, places that are barrier-free in an architectural sense are perceived to be undesirable or unsafe. This helps explain how even in so-called accessible spaces there can still be exclusion and stigma.

Spatial boundaries are unseen but understood in terms of what types of behavior are acceptable. It is these unspoken rules of where, how, and in what way it is acceptable to use one’s body that affect how discrimination and spatial exclusion operate.

The intersubjective encounter between disabled and nondisabled people is a key site for understanding cultural attitudes that influence acceptable ways of comportment.

From interviews and observation interactions between disabled and nondisabled subjects, some noticeable patterns emerged. These interactions can be grouped into five types of outcomes in such interactions (c.f. Davis 1961). The first case occurs when disabled

Cuencanos are treated “as normally as possible” but with some tolerance for their unique requirements; this is the most desirable outcome according to most of my informants. The opposite of a respectful encounter are those cases when disabled people experience overt exclusion through open discrimination. The logic of spatiotemporal displacement suggests that although such cases were prevalent in the past, they occur with less frequency in contemporary Ecuador.

The majority of interpersonal encounters involve ambiguous behavior that is not easy to interpret but nevertheless can lead to exclusionary practices. In the second case, disabled people are treated as virtual non-persons. Eye contact may be avoided, and a large interpersonal distance is maintained. In the third case, disabled people are fawned

189 over by offers of exaggerated respect and care. Such hyper-attention reinforces the sense of deviance embodied by the disabled actors. Social context obviously plays a role – gender, location, and class all matter in these interactions.

Being avoided or treated with exaggerated congeniality often arises during greetings or other face-to-face interpersonal rituals when an individual has an unexpected bodily difference. Like all societies, Ecuadorians have specific learned bodily techniques used in greetings (Mauss 1973). For example, shaking hands can be problematic with people such as Joaquín, who has two prosthetic hands. Although he encourages people to shake his metal hands, it often leads to awkward interactions. Others who use canes or assistive devices may not be able to shake hands without losing their balance.

Wheelchairs users deal with two issues: will people be comfortable bending down to shake their hand, and how will people react to their hands since they can be unclean from pushing their wheelchairs. Using their wheelchair places them in direct contact with “the ground” -- a physical feature that is always “dirty;” in addition, their hands are also in fact at times actually discolored with visible particles from the street. All of these literal and symbolic disruptions occur since both parties are unsure about how to comply with corporeal salutations.

When the embodied differences or requirements of the disabled actor are acknowledged but there a lack of understanding about how to deal with them, we might called this benign ignorance. For example, helpers might touch or grab a disabled person in an inappropriate way such as when someone with a vision impairment is dragged across a busy street. Consequently, these interactions can still be uncomfortable for both

190 parties. Since this is often understood to be an inevitable consequence, people may revert to ritual avoidance to reduce the chance of awkward interactions. Most people I spoke with have low expectations of non-disabled people, and tend to be tolerant of most encounters as long as they are treated as persons. Direct discrimination (first case) or being made invisible (third case) are no longer considered acceptable.

With this level of stigma and strained interactions, it is understandable why one of the historical forms of spatial order focused on containment or segregation. If disability is associated with discomfort, potential infection, and mismatches between built environments and bodily requirements that can cause social disorder. Although spatial exclusion often focuses on issues of physical access, it is the cultural logic of containment that keeps disabled people out of able-bodied spaces.

Transgressive actions are those that would be impermissible if performed by nondisabled people, but that are socially sanctioned for people with visible impairments.

Creative use of public space depends on understanding the limits of transgressive action in specific sites, or in other words what types of actions are considered “out of place.” An acceptable transgression is not an oxymoron if we take into account how tolerance of violations of social rules depends on visible bodily differences.

If it is understood that it has been increasingly acceptable for disabled

Ecuadorians to interact in public spaces, we can examine where and when their presence is encouraged or tolerated. People with disabilities have been granted a range of preferences by Ecuadorian law. These include (but at not limited to) the ability to go to the front of lines at banks or government institutions, preferential parking, and front-row

191 seating at events and performances. As with most types of preferences, enforcement of these rules is selective and predicated on the actions of bystanders, gatekeepers, and disabled people themselves. Some of these preferences are controversial; my informants have pointed out that there is often backlash against preferential treatment at banks. In other cases, government officials are simply unaware or uninterested in enforcing legal requirements.

Disabled Ecuadorians are well aware of the unspoken rules that govern their activities. Begging for money or performing on the street in unobtrusive places usually qualifies as acceptable behavior. Encroaching into expensive hotels, in front of public agencies, or in places where there are many tourists may be discouraged. I witnessed several instances of people with noticeable physical impairments being forcibly escorted by security guards from the steps of the high-end hotels in Cuenca. These armed guards defend upscale establishments against undesirable trespassers.

People with disabilities are permitted actions that might be transgressive for nondisabled individuals, such as asking for donations or selling items on buses. Riding the bus in Ecuador often involves having candies or small items put in your hands after listening to short speeches made by disabled vendors. More than other vendors, bus riders often tolerate solicitations from disabled people and end up donating money. Acceptable practices for soliciting money largely depend on the perception of need or severity of disability.

To return to the SPD paseo again, the concepts of stigma and transgression help explain how physical barriers are experienced differently for people with disabilities.

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There is no doubt that the steep, narrow steps at the church offered obvious physical barriers to SPD members with mobility impairments. Using teamwork, group members were able to move individuals up the stairs through carrying, crawling, and slowly using their mobility aids to make their way upward. These strategies show how space can be adapted to the needs of disabled individuals as necessary. However, witnessing an adult woman crawl on her hands and knees up a long staircase elected penetrating stares of curiosity from onlookers. As Claudia told me later, such stares and comments occur whenever she does something socially transgressive like that: she produces spectacles on a daily basis.

Later in the beach trip, another transgressive social behavior took place as people attempted to find ways to swim in the water: adults purchasing swimming floats designed for children. It was clear that as SPD members quickly bought up many of these floats from vendors walking on the beach they intended to use them for themselves. For adults to use armband-style floats was unexpected for the other swimmers. SPD members joked among themselves about how silly they felt, but that it was also great that the strategy worked. It was also unusual for us to place a beach chair into ocean and to let someone sit in the breaking waves, but it worked for the people unable to stand up on their own.

The border between acceptable and unacceptable transgressions is precisely what people promoting disability awareness are trying to alter. In the stories I heard, it is repeated and often uncomfortable incursions into able-bodied space that disrupt the cultural logic that excludes disabled people in the first place. Practices, procedures, and expectations change only when the first person breaks a particular socio-spatial barrier:

193 the first blind Burger King worker; the first disabled university student; the first wheelchair user at a local soccer match; the first factory worker to request an accessible restroom. Simply trying to go where most nondisabled Ecuadorians have always been able to go – and sometimes by any means available – represent spatial tactics for promoting inclusionary practices.45

Conclusions

The struggles that SPD members encountered on the coast and in Cuenca illustrate two central fallacies in spatial discourses of accessibility. First, the existence of public space free of limitations and barriers is a myth. Like all social spaces, Cuenca has a grid of spatial relations that marginalizes some users and privileges others. “Everyone else” does not have full access to the geography of Cuenca. The second fallacy implied by the statement tends to equate access with success. The assumption is that by getting to go where everyone else has will lead to success, or participation, or greater social justice.

I also discussed the material basis of barriers in Cuenca by focusing the persistence of architectural and transportation impediments, as well as how spatial exclusion has been challenged. In creating inclusive spaces and demanding their right to the city, disability advocates have attempted to challenge barriers and to draw attention to the idea that the environment is designed for able-bodied people.

45 The issue of “embodying” diversity applies across different domains, as Ahmed (2009) discusses in relation to the conflicts that arose in being both a Black feminist and the representative of racial diversity within an institution such as a university.

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Examining Cuenca’s urban form helps illustrate the how spatial features relate to the marked/unmarked identities associated with mobility. Understanding disability issues in Ecuador involves recognizing how all individuals are governed in space based on their propensity for social contamination, their corporeal needs and abilities, and the amount of disorder that their presence might cause in public. Since most Ecuadorians do not have visible disabilities, these issues are often taken for granted. Public efforts at producing accessible spaces in Cuenca have a short, limited history. As I have shown, they can generate new forms of discomfort as Ecuadorians are faced with perceived threats to the social body.

Like disabled people everywhere, Ecuadorians with disabilities live in an environment that has been designed for non-disabled people. This chapter has demonstrated that the cultural meaning of disability is profoundly shaped by the form of built and natural environment and the way that people with disabilities have responded to inaccessible design. In addition to widespread physical barriers, inaccessible environments stem from the human practices that mark disabled people as different. The narratives of disabled Cuencanos demonstrate that they feel out of place in sites such as the beach, the bus, and plazas. Whereas wheelchair athletes have responded in public ways as they encounter able-bodied privilege, others have taken individual or community-based approaches to creating accessible space. Meaningful social participation for people with disabilities must address the perception of belonging to social spaces, not merely physical access to buildings or public sites.

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In analyzing the social production and construction of space, I have briefly touched on how the Ecuadorian state has attempted to mold behavior through urban form and how those efforts have been resisted. Newfound awareness with regard to accessibility means that the state has begun to conceive of disabled individuals not solely as bodies to be contained, but perhaps as potentially productive citizens. The shift in governmentality from social neglect to productive citizen is the topic of the next chapter.

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CHAPTER 6 – ECUADOR SIN BARRERAS: GOVERNING DISABILITY AND CITIZENSHIP

` Fifty-seven-year-old Joaquín had both his hands amputated after an industrial accident at the electric company where he had worked for many years. Both of his hands are now what he describes as mechanical “pincers” that enable him to drive a car, use a computer, and make phone calls. In an interview, Joaquín explained that the state’s management of disability has changed from a situation of “basic neglect” to a system where impaired individuals are certified with a numerical rating entitling them to financial and other benefits. He showed me a tabla de grado de minusvalía, or a table with different grades of impairment that specifies exactly how the severity and type of disability entitles people to benefits. The Ecuadorian government, Joaquín reported,

values all of the parts of the body. If you lose a toe, you have ‘x’ percentage, if you lose something lower, if you lose a finger or a hand, or if you lose both hands or an eye, it is a higher percentage. It’s a ‘technical management’ approach.

As Joaquín explains, not only is financial compensation dependent on one’s level of impairment, but it is also a source of public legitimacy. The “simply technical” certification of impairment entitles individuals to economic benefits, hiring preferences, and changes the way that they view themselves. The attention toward disability from the

Ecuadorian state would have been unthinkable when he was young man when people with impairments were disregarded.

Joaquín’s explanation of the broad shift in the way that the Ecuadorian state governs disability was echoed by others I spoke with in Cuenca. As I discussed in previous chapters, meanings of disability were typically perceived to be tied to change

197 over time and discourses of modernity. In this chapter, I examine how the Ecuadorian state has altered its management of disability through the enactment of legal changes, labor market preferences, and new systems for validating impairment. In exploring the

Ecuador sin Barreras (Ecuador without Barriers, or ESB) campaign as a set of technologies of governmentality (Foucault 1978, 1991; Rose 1996a; Dean 1999; Walters and Haahr 2005), I consider the following questions: how does the state manage bodily difference in the discursive and everyday realms, and how do practices of governance shape individual subjectivities? How might we understand how the contradictory tendencies embedded in what Joaquín labels “technical management” of disability and what they contribute to the making of “active disabled citizens”?

Over the last few decades the increased biopolitical monitoring of bodily difference has created a more robust system of surveillance, validation, and prevention of disability. The Ecuadorian state has “acknowledged” disability in the sense that it has included citizens with bodily and behavioral differences within its general mandate to enhance the well-being and health of its broader population. I argue that neo-liberal and decentralized governmentalities have framed disability as a problem to be overcome on an individual level, shifting the burden of managing disability from families to individuals and the communities to which they belong. Similar to the restructuring of many social programs (Dean 1999; Collier 2005), the Ecuadorian government’s objective is not simply to increase social inclusion, but to reduce the cost of entitlement programs and encourage productive, independent disabled citizens. Narratives of people with disabilities from Cuenca indicate that disability is being articulated into new realms: the

198 disabled voter; the disabled worker; the disabled politician. While these developments may break down historical forms of exclusion, they also mark a new regime of biopolitical control that attempts to “prevent” disability and move disabled bodies into the workforce while environmental barriers and social stigma still keeps many people who want to work from doing so (Dean 1995). For instance, these new forms of subjectivity construct disabled people as clients or customers of the state rather than neglected second-class citizens (Clarke 2007). New categories of personhood, such as employed people with disabilities, are emerging through citizenship practices and projects of self-governance exhibited by biosocial groups of individuals with similar bodily impairments.

My argument so far has explored how disability emerges from the interplay between bodily impairment, cultural and economic forces, and constraints in the lived environment. The previous chapter closely examined how barriers to accessibility present significant material challenges for disabled Ecuadorians in their everyday lives. In addition to more obvious physical barriers such as lack of access to buildings and inaccessible transportation, I explored how practices of exclusion emerge from sociocultural barriers that mark the boundary between disabled and non-disabled subjectivity. In this chapter, I turn to the way that disability is governed in Ecuador and rejoin the theme of sociocultural barriers to inclusion by exploring new technologies of governmentality.

In what follows, I first lay out key analytical aspects of governmentality as it applies to shifts in how Ecuador has managed bodily difference. I examine how the

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Correa administration has altered its focus on its disabled population through attempts at

“massive enrollment,” or campaigns aimed at validating Ecuadorians with impairments through government agencies. The second half of the chapter discusses some of the contradictory effects of the ESB campaign, focusing on how the Correa administration’s efforts at voter mobilization in approving a new constitution have generated new expectations about the collective political power of disabled Ecuadorians. I also discuss some of the challenges that emerge in Cuenca as the ESB campaign has been implemented, highlighting how practices of self-formation promoted by government policy clash with local practices of discrimination. These shifts points to struggles within and between community-based organizations and the state in terms of how to manage neoliberal devolution and the production of disabled citizenship.

Governing disabled bodies

The Ecuadorian government’s shift in its increased attention to disability in the last two decades mirrors the general shift in modern nation-states toward population-level management of health, or what Foucault (1978) characterizes as biopower. Foucault conceives of power as a productive and positive means of control involving the power over life even more than a reliance on the power to exclude. He regularly presents examples of disablement, physical anomaly, and impairment to illustrate the historical shifts in the management of population-level health (Foucault 1994[1973]; Philo 2000;

Foucault 2003; Tremain 2005a). The productive nature of biopolitical regimes can be illustrated by reactions of government to different diseases. Compared to negative

200 regulation against leprosy in the 19th century, Foucault describes Europeans encounters with the plague:

The reaction to plague is a positive reaction; it is a reaction of inclusion, observation, the formation of knowledge, the multiplication of effects of power on the basis of accumulation of observations and knowledge. We pass from a technology of power that drives out, excludes, banishes, marginalizes, and represses, to a fundamentally positive power that fashions, observes, knows, and multiplies itself on the basis of its own effects. (Foucault 2003: 48)

The shift from negative, exclusionary power to a knowledge-based regime of power serves to identify and thus control the health of populations. In the biopolitical state, experts produce categories of normality and abnormality, which are attached to highly unequal cultural valuation and treatment (Waldby 1996; Rose 2001). Historically, scientific observation and measurement and its applications contributed to the rise of biomedicine and the field of public health (Hacking 2007). In general, the theory of biopower allows medical anthropologists to analyze the intertwined relationship between power and the disciplinary knowledge of the health professions.46

Inspired by Foucauldian formulations of biopolitics, theorists of governmentality provide an analytical framework that investigates the relationship between the governance of population health and the formation of political subjects. Walters and

Haahr (2005) offer an excellent overview of three different meanings ascribed to governmentality. Governmentality can refer to how conduct is regulated, not merely

46 Chronic illness and disability complicate the role of expert knowledge and illness categories since they often change over time, are not easily classifiable, and vary cross-culturally (Parr and Butler 1999; Tremain 2005a). Disabilities or chronic illnesses, as Dumit (2006) notes, are conditions that are contested between patients, health care providers, and insurance companies (Dumit 2006).

201 through the state, but in a pervasive manner at the level of individual activities or practices as well. The second meaning stresses the “mentality aspect:” governmentality refers to an approach that seeks to discover the logic or rationality that motivates a particular form of rule. In this vein, Rose (1999: 175) identifies the neoliberal shift from broad-based welfare policies toward “governing through community.” The third meaning suggested by Walters and Haahr expresses the historically particular “mode” of power that emerged in Europe, with a focus on population, health, and knowledge.

Larger scale shifts in governance in Ecuador’s case – such as the differences between the way that pre-Inca, Inca, Spanish, and post-colonial governments treated bodily difference -- correspond to the epistemic meaning of governmentality. Over the last few centuries, societal treatment of people with bodily differences in Ecuador has been influenced by both eugenic (Wullen 1937) and non-eugenic regimes. Like several other countries in Latin America and around the world, Ecuador passed laws that prevented marriages for people designated as having “hereditary” mental or physical pathologies (Wullen 1937: 274). As I discussed in chapter 3, the respect accorded to disabled people during the Incan epoch was replaced by more exclusive practices in the colonial and post-colonial period (Kendall 1973; Malpass 1996). Like other Latin

American countries, Ecuador banned people with mental impairments, “chronic impotence,” and “dipsomania” (chronic drunkenness) from marriage (IDRM 2004). As late as 2006, disability rights violations were not included in efforts to monitor human rights by the Ecuadorian government. Discrimination persisted in the form of legal restrictions: according to the civil code, people with disabilities were not allowed to serve

202 as witnesses for the signing of marital or death certificates. With these types of legal and social restrictions, it is no wonder that conceiving of disabled Ecuadorians as being involved in production and social reproduction was unthinkable prior to the 1990s.

Enrolling Disabled Subjects

Scholars building on Foucault’s notion of governmentality distinguish between rationalities and technologies of government. Rationalities refer to ways of thinking and bodies of knowledge that frame social action as possible or practical. In contrast, technologies are “assemblages of persons, techniques, institutions, instruments for the conducting of conduct” (Miller and Rose 2008: 16). Unraveling the mechanics of how these technologies operate helps to reveal how an entity as amorphous as the “the state” shapes its subjects. However, scholars have shown that the state is a not a discrete social fact, but is rather is constructed by everyday practices (Mitchell 2006). Rose (2001) draws our attention to the techniques and instruments that comprise the technologies of conduct in biopolitical institutions. Such technologies are not merely neutral, objective ways of regulating conduct, but in fact help determine how subjects conceive of themselves and behave. Such analyses of the state focus attention not on abstract notions of state power, but more on why particular campaigns occur in specific places or as the result of historical forces within state institutions (Ferguson 1994). It is at the level of everyday practices where we can discern how disability is governed in Ecuador through a multi-pronged system of validation, public awareness campaigns, and legal requirements.

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Ian Hacking (2007: 310-312) cogently discusses how classifications help create

“kinds” of people through seemingly mundane aspects of knowledge production in the human sciences. Hacking groups ten “engines of discovery” that are geared toward discovery and power over deviant bodies: counting, quantifying, creating norms, correlating, medicalizing, biologizing, and geneticizing (2007: 305-306). The last three engines play an important role in considering the Ecuadorian’s state approach in governing disability: the practices of normalization, and bureaucratization, and resistance to experts. Hacking’s framework opens an analytical space to make sense of the ambiguous and multifaceted role of CONADIS and the ESB campaign.

Considering how different kinds of people are produced through institutions, expert knowledge, and classifications helps us explain how the category of disability is in fact culturally and historically contingent. This chapter employs aspects of Hacking’s framework as a way to understand how novidentes or personas con discapacidad have acquired meanings in the context of emergent technologies for certifying and quantifying impairments. I am particularly interested in exploring how community organizations in

Cuenca have coalesced around resistance to expert knowledge as well as the collective experience of impairment or damage as the basis for biosociality (Rabinow 1996) or forms of biological citizenship (Petryna 2002).

Given Ecuador’s model of public health and citizenship, Roberts has argued that there is limited explanatory value to concepts of biological citizenship developed in Euro-

American contexts, suggesting that Ecuador’s fragile civil society, inadequate medical infrastructure, and legacy of racial ideologies complicate the relationship between

204 biology and personhood (Roberts 2008). While I agree that it is important to tease out the fragmented and localized aspects of these interrelationships (Roberts 2007; Guell 2011), I suggest here that the ESB campaign around disability has some important differences from the issues at stake around in-vitro fertilization (IVF) that underpin Roberts’ argument. In particular, the biosocial ties that have arisen around impairment help us understand the links between embodied differences and personhood (Friedner 2010).

Indeed, given that Ecuador has procedures and policies that normalize bodily anomalies – such as telethons, asylums, special education programs, and system of rehabilitation– we can examine how these technologies objectify disabled people to make them governable subjects (Tremain 2005b). Rehabilitation programs at SPD, wheelchair sports, and microenterprise projects all represent ways that limit and allow for self-improvement.

CONADIS and the ESB Campaign

Following the United Nations (UN) Decade for Disabled Persons (1983-1992),

Ecuador was one of several nations that created new initiatives aimed at improving the lives of their disabled citizens. In 1996, the Ecuadorian government formed CONADIS,

(Consejo Nacional de Discapacidades, or the national agency for people with disabilities). In 2002, Ecuador became the first country in Latin America to receive the

“Franklin D. Roosevelt International Disability Award,” an honor that recognizes countries demonstrating progress toward societal inclusion for people with disabilities.

During the award ceremony, then-President Gustavo Noboa asserted: “Every State must provide all the necessary conditions for an inclusive society to become a reality, with

205 equal opportunities for everyone. A deep change of attitudes throughout society is also crucial to eliminating all discrimination" (AAPD 2002). While it has been suggested by international observers that the receipt of the FDR Disability Award is indicative of

“broader public policy initiatives that are among the most extensive in Latin America”

(IDRM 2004), I offer a more nuanced perspective below.

The growth of CONADIS and the FDR Award helped create the conditions that made the ESB campaign possible. The three central components of the campaign are: a) improvements in the rehabilitation system, b) a commitment to the prevention of disability, and c) increased employment for disabled people.

Figure 16. Poster from the ESB campaign

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To a large extent, ESB reflects the political commitments of Vice President Moreno, who as a wheelchair user has leveraged his personal experience into political objectives.

Director of CONADIS from 2001-2004, Moreno has advocated for new disability programs since his election in 2006. Under Moreno’s leadership, the Correa administration pledged to lay the foundation for equal access to services in the domains of education, health, housing, recreation, work and legal rights. CONADIS adopted its

Second National Disability Plan in 2006, with social inclusion as a key objective

(CONADIS 2006). Figure 16 shows a promotional banner for the ESB campaign that depicts Vice President Moreno embracing a person giving a “thumbs up” sign.

Technologies of Governance

Through CONADIS and the ESB campaign, the Ecuadorian state has

“acknowledged” disability in the sense that it has included citizens with bodily and behavioral differences within its general mandate to enhance the health and well-being of its broader population. The emerging set of techniques for governing disability consists of several components. First, federal agencies validate and physicians certify disability in order to determine distribute benefits for people with disabilities (cf. Stone 1984). As in most nation-states, no single entity provides disability-related services. Agencies that deal with employment, medical treatment, civil rights, community development, and health care promotion may and often do manage disabled populations. Secondly, disability policy has been increasingly seen as the management of public health through the prevention of certain diseases (such as polio or tuberculosis) and the promotion of healthy practices (such as pre-natal care, immunization, and rehabilitation) (CONADIS

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2006). CONADIS is charged with enumerating, categorizing, and validating citizens in terms of their right to disability services. Kohrman (2005: 7-8) refers to such organizations as “bio-bureaucratic” in that they attempt to manage bodies into the

Figure 17. Requirements to obtain CONADIS disability card

208 purview of health related professions. As Joaquín described in the beginning of this chapter, this technology of biopower constructs disability as an administrative category with resultant economic benefits, rather than as medical classification.

The formal procedure for certifying one’s impairment involves interacting with a series of biopolitical institutions. The first, most basic requirement is that an individual must be able to show that they are registered as a citizen with the Ecuadorian state. If they are registered, they have the right to a cédula, or national identity card. According to the Office of the Vice President, since fifteen percent of Ecuadorians do not have such documents, this presents the first Figure 18. Tax Benefits for Disabled Citizens barrier for some seeking services. In the course of conducting interviews, often people would pull out a carné

(in this case, identification card from

CONADIS) and their cédula to show me. The CONADIS carné (also called a carnet) functions as the official marker that they have been issued a card that identifies them as certified person with a disability.

Figure 17 describes in details the steps necessary to obtain the

CONADIS carné: a medical

209 verification, two photos, birth certificate or national identification card, and physical presence. The bottom half of the diagram specifies that in addition to the carné and cédula, applicants must demonstrate financial need.

Official designations of impairment have wide-ranging and sometimes unanticipated effects. Tax benefits make up one advantage of registration with

CONADIS. Figure 18 shows a pamphlet created by CONADIS with the title “The

Internal Revenue Service [SRI] is thinking about people with disabilities.” On the back, the pamphlet specifies that people with disabilities are eligible to deduct purchases of technical aids and other items from SRI.

The system of certifying impairment creates a special status of citizenship with different grades of entitlements validated by the state (cf. Petryna 2002). It contributes to a hierarchy of impairment (Deal 2003) that interpellates some disabled people as more legitimate than others, and thus increases social differentiation within disabled population as a whole. As people mentioned in Cuenca, having their carné and cédula gave people a sense that they were finally entitled to preferences that they had always deserved but had never been recognized. Especially for older Ecuadorians, the process of getting their impairment certified brought a modicum of “official” recognition of part of their physical selves that had usually been perceived as solely a negative attribute.

The necessity of publicly acknowledging disability to receive government benefits presents the same dilemma discussed in chapters 4 and 5 with regard to stigma and personal assistance. Disclosure of a stigmatized and/or damaged body is necessary to make individuals visible to the state and thus capable of receiving benefits (Petryna 2002;

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Fassin 2007). But this disclosure is also an aspect of asking for assistance in climbing steps or dealing with physical barriers, or a performative act that creates the idea of need critical to begging as a livelihood strategy. One of the binds this produces parallels what

Wendy Brown labels “injured identities”’ (Brown 1995). The problem for disabled people is that by acknowledging the consequences of their impairment as harmful, they are forced to cast disability as an inherently negative condition. That position is clearly at odds with the promotion of pride central to the project of disability rights movements.

The Biopolitics of Massive Enrollment

In August 2008, Ecuadorian Vice President Lenin Moreno visited the city of

Cuenca, the regional center of southern highlands. Moreno’s appearance had dual purposes: to raise awareness about disability issues as part of the Ecuador sin Barreras

(Ecuador without Barriers) campaign, and to gather political support for the new constitution that had been proposed by President Rafael Correa. In addition to speeches and performances, the all-day event aimed at a “massive enrollment” of people with disabilities into bureaucratic systems to provide benefits through the CONADIS. The event took place in a large courtyard adjacent to the hill-top archeological ruins of

Pumapungo, where Incan rulers first extended their control over the local population.

Moreno’s visit represented a much more subtle extension of state power into the southern region of Ecuador that attempted to incorporate disabled citizens into bureaucratic government institutions and to manage health conditions.

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Local disability leaders later told me that this event was the first of its kind: never before had thousands of people with disabilities and their caregivers assembled in

Cuenca. I arrived at 10am, around two hours prior to Moreno’s arrival. As the local military band played spirited music and police dogs sniffed for potential bomb threats, small groups of people streamed into the courtyard and sought out acquaintances or known community groups; many clustered with other people that shared their type of impairment. I greeted and chatted with members of the three community groups I had been working with for a few months: members of ANA, SPD, and wheelchair athletes.

Lacking mobility aids, some people had to be carried into the event by soldiers. Others

Figure 19. Vice President Moreno at Rally in Cuenca

212 were carried by their parents out of minivans and taxis.

Moreno’s arrival signaled the start of a series of performances, speeches, and honorary awards that revolved around disability issues. The music blaring over giant speakers varied from traditional Andean songs to salsa and cumbia tunes. Moreno began his talk explaining the purposes of the ESB campaign and imploring people to “open their minds.” After encouraging attendees to vote in the upcoming elections, he focused the majority of his speech focused on promoting a “Yes” vote for the new constitution, including clarifications about abortion and gay marriage in which he criticized opposition from the Catholic Church. As these events took place on the center stage, all around the courtyard, and other governmental employees were busy registering people, validating their disability credentials, and distributing technical aids, including such items as canes, wheelchairs, and assistive hearing devices on the spot. At one point, a voice over the loudspeaker announced that “one hundred people have now received technical assistance!” This pronouncement added to the atmosphere of propaganda that pervaded the courtyard. The organizers had orchestrated the event to make the government’s efforts at serving disabled citizens highly visible to the local media and disability advocates.

The Cuencan daily newspaper El Mercurio (Carnetización a discapacitados 2008) noted that the ESB campaign aims to confront the issue of disability rights on a national level. According to the article, Vice President Moreno urged families “to not abandon their children, to not be ashamed of themselves” and to demand attention to and the enforcement of their rights. He further stressed that: “only ten percent of people with

213 disabilities are carnetizadas,” (have certified impairments) indicating that the level of government enrollment is still quite low. This figure suggests that despite the relative progress made in the last decade or so, the state’s capacity to address the needs of most

Ecuadorians with disabilities has changed very little – a situation confirmed by my informants in Cuenca.

Manufacturing a Crisis?

The state of emergency declared by the Correa administration exposed the underlying crisis in the way that disability has been managed in Ecuador. As I argued in previous chapters, government efforts to promote social inclusion stand in stark contrast to the social neglect and isolation experienced by most disabled Ecuadorians prior to the

1990s. In May 2008, Vice President Moreno presided over a conference publicizing

Ecuador’s commitment to the recently approved United Nations Declaration of the Rights of Persons with Disabilities. At the ceremony, Moreno announced the creation of an overt symbol of government regulation: el observatorio de la discapacidad – a permanent public agency for monitoring compliance with international laws. For theorists of governmentality, the creation of watchdog agency for regulating the conduct of citizens and government officials appears to be an all-too-obvious example of biopolitical surveillance in action.47

47 This entity is called the Observatorio Ciudadano del Cumplimiento de los Derechos de las Personas con Discapacidad (Citizen’s Observatory for the Compliance of the Rights of Persons with Disabilities). Funded jointly by the Disability Rights Fund and USAID, it is being

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The enrollment of disabled Ecuadorians into state systems of certification can be seen as strategy aimed at influencing the way that disabled citizens actively participate in the political realm. One of President Correa’s key strategic moves was increased political mobilization of disabled voters. In the past, their participation in electoral politics had been virtually ignored, but the Correa administration adroitly cultivated the voting power of Ecuadorians through a series of public speeches about disability awareness designed to bolster its political support.

Between 2006 and 2008, the Correa administration enacted the most significant set of government decrees in the area of disability policy Ecuador’s history. In June 2008,

President Correa pledged to enforce the newly signed United Nations Declaration of

Rights of Persons with Disabilities. Moreover, Correa’s effort to gain approval for a new constitution placed the rights of disabled Ecuadorians squarely into the national political arena. In addition to other key issues that Correa made focal points of his campaign, disability politics played a part in his political strategy. The three prongs of the ESB campaign – improved rehabilitation, prevention practices, and increased employment– were proposed as crucial areas to social inclusion for Ecuadorians with disabilities. The timing of these events with the decree of a state of emergency caused me to pause during my fieldwork and consider what political calculus was involved in privileging disability issues.

implemented by FENEDIF (National Federation of People with Physical Disabilities) and focuses on the areas of health, work, education, communication, and integration (FENEDIF 2012).

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Approving the Constitution

Leading up to the summer of 2008, the Correa administration focused almost entirely on approval of the new constitution. In the wake of a series of right-leaning presidents, the administration sought to reach out to groups that emphasize organizing around collective identity, or what have been called “new social movements” (Edelman

2001). Correa’s party48 was able to consolidate power partially through mobilizing a loose coalition of indigenous groups, environmental groups, leftists, liberals, unions, and people with disabilities. Following an extensive campaign fueled by massive funding from the Correa administration, the electorate passed the Carta Magna (the term commonly used) by a two-to-one margin. The constitution became the first constitution to enshrine legal and civil rights for disabled citizens under the newly approved UN

Treaty Declaration of the Rights of Persons with Disabilities. The constitution was approved in September, two months following Correa’s declaration of the state of emergency. My reading of the news coverage and rhetoric of the Correa campaign suggested that expanded programs and services to disabled citizens were part of courting a new voting bloc. 49

48 Alianza PAIS—Patria Altiva y Soberana ("Alliance for a Lofty and Sovereign Fatherland") was founded by Correa to aid with his run for president in 2006. 49 New constitutions are common in Ecuador; on average, they have lasted just under nine years in the eighteen decades since independence from Spain. The victory firmly consolidated the administration’s power and laid out an ambitious scope of work. Key features of the new constitution include the prohibition of discrimination, increased spending on the health and poverty, and an expansion of governmental oversight of a number of industries. Most impressively, it is the first constitution to grant legally enforceable rights to ecosystems, effectively granting legal protection for natural environments. See Appendix B for disability provisions in the constitution.

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People I spoke with in the midst of the constitutional campaigns expressed their dissatisfaction with Moreno’s lack of attention to concrete policy on disability services.

Moreno’s visit to Azuay was followed by similar events in other provinces, demonstrating his commitment to focusing on areas of higher need outside of Ecuador’s large cities, where more services are available. From observing the composition of the attendees at the event in Azuay and speaking to my informants, it appeared that many people had made an incredible effort to make it to this event from rural parts of southern

Ecuador. Yet the president of SPD and CONADIS staff confirmed that these newly registered individuals likely made up a fraction of disabled people in the surrounding provinces.

Judging by the increased voter turnout by disabled Ecuadorians, it seems that

Correa’s outreach was successful. During the recent campaign to approve the

Constitution, taxi drivers worked with disability organizations to provide free transportation for people with mobility impairments to get to the polls. In fact, a “get out the vote” project in Quito was sponsored by additional resources from USAID.

Television media coverage highlighted how many people with disabilities were first time voters. The tropes that appeared in newspaper and television coverage focused on the barriers to voting – most people described how they had been discouraged from voting in the past by family members, apathy, or physical inaccessibility.

The “Taxi Solidarity” project is an example of the biopolitical state at work on the ground with its focus on getting disabled bodies to voting booths. Jointly sponsored by the ESB program and USAID, the project organized a specific campaign in several

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Ecuadorians cities called “Tenemos derecho a votar” (We have the right to vote). Taxis willing to pick up, wait, and return disabled voters to their homes were made available at no cost. In the Cuencan daily El Tiempo, an article on September 29, 2008, highlighted the barriers and aids that were offered to people who tried to vote. It described how a visually impaired woman named Rosendo was able to vote with help from the Taxi

Solidarity project, but that accessible ramps were still missing from voting sites. Another person who had a visual disability explained that he were able to read a few articles of the

Constitution in “mp3” format (digital audio files), but that he was preoccupied because the taxi slated to drive his wife, who is also blind, never showed up. The article also indicated that Joselyn Segarra, a woman with a mild retardation, would be voting. She was a notable first-time voter, since people with intellectual disabilities had not been allowed to vote in the past. It is easy to imagine that many first-time voters lent their support to the incumbent Correa administration since it was due to government mandate

(and enforcement) that such polling sites were made accessible. At the same time, the irony in having the Taxi Solidarity project drop off people to inaccessible polling sites clearly shows the uneven practices of government programs.

The director of a nonprofit organization in central Ecuador took a more cynical view of the ESB campaign. From Maritza’s perspective, the rhetoric of the campaign was more impressive than its accomplishments or the amount of financial resources to back the programs:

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Well, look at the Ecuador sin Barreras campaign from the vice-president, it sounds to me like a metaphor, because maybe it will be like this during this administration, but then after, nothing. With regard to the outcomes I’m not optimistic – I’m very realistic. They are expanding funding for public campaigns that mandate that funds be invested in disability services, [and] they have made an emergency decree in the domain of disability services, but it’s all just a piece of paper, nothing more.

For Maritza, the critical issues are the commitment of financial resources and continued support for existing programs. She explained that her organization had run a successful wheelchair production program that was supported by CONADIS, and they suddenly decided to pull the funding. Maritza’s opinion was that these programs depend on the political climate. She continued:

In the last years, they have demonstrated that these are merely political moments, because if you want to work on long-term policies, then you do not do a little here, a little there. If they want to achieve something – and I hope they do with the Ecuador sin Barreras campaign – I hope they are able to raise consciousness about disabled people to the broader public, about the opportunities that they should create, above all respect for the rights of people with disabilities.

Maritza was concerned that after Moreno steps down from the Vice Presidency, the ESB campaign would fall to the wayside. She made the case that the government should focus on changing the way that disability is perceived by the public. What is unclear is the extent to which heightened public attention that occurred during the political campaign to pass the new constitution will continue.

Governing Disability in Cuenca

If increased attention to disability has been projected from the capital in Quito, less understood is the effect of this attention in peripheral regions of Ecuador. The governance of disability offers a window into how provision of services plays out in the context of the decentralized state. How does the central government regulate the health of

219 the disabled population in regions outside of its two major cities, and what role do local organizations play in this process? The evidence I gathered suggests that the state’s attempt to extend services to regions outside of its two large cities has been patchy at best. This stems in part from the relatively insulated manner in which regional bureaucrats have historically related to the central government and in part from the inadequate set of existing institutions (i.e. agencies other than CONADIS) that have served disabled people in the past. Corruption and the general unresponsiveness of local elites to public welfare have encouraged civil society organizations to fill a community need.

Ecuador’s efforts to register and serve a higher percentage of people with disabilities through government institutions have been most effective in Quito but less so in outlying areas like Cuenca. Like most government agencies, CONADIS is based in the capital, gradually establishing regional offices throughout each of the provinces.

However, CONADIS staff admitted that until the last few years, many of these offices were extremely limited. Many of the people I spoke with in southern Ecuador explained that in the past, they had to travel to Quito in order to receive disability benefits and register with CONADIS. Despite being the third largest city in Ecuador, Cuenca had very few resources to offer disabled citizens.

While certain aspects of governance have become more centralized in recent decades, the extension of state power has been uneven. On one hand, the national government has extensive control over generating income and distributing resources.

Several industries are monopolized, and national agencies retain a high level of control

220 over spending priorities. On the other hand, many areas outside of Quito have been effectively autonomous, not just for decades, but for centuries. Up until the 1950s Cuenca was virtually closed off from the rest of the country, and the structure of governance relied almost entirely on local elites (Hirschkind 1980). Brownrigg (1972: vii) suggests that the “noble” caste of elites in Cuenca exercised their power through “a virtual monopoly” of the legal system, the universities, and the commercial and banking sectors;

Miles (2004) confirms that systems of palanca and patronage continue to play an important role in Cuenca. In other words, governing disability from the auspices of the central government in southern Ecuador is a recent idea.

I had the opportunity to speak with Fernando, the regional director of CONADIS for the province of Azuay, several times during my fieldwork. Fernando was a blind man who had been active in disability rights for a decade. Like the Vice President, the prominent role that he played as a disabled person with a position of authority had been viewed favorably in the community. His local office had grown from one person a few years ago to more than six, including office staff and a medical professional who assists with disability validation. During an interview, he pointed out that his office’s budget has increased considerably. Throughout 2008, he was busy expanding the role of CONADIS in Azuay. Fernando pointed out that the Azuay office is responsible for each of the fifteen cantones (administrative units smaller than provinces). His main message, which was hard to evaluate in the early stages of fieldwork, was that there was beginning to be a significant investment in disability services in Cuenca.

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As Fernando suggested, I did witness an upsurge in “bricks and mortar” construction at the various organizations that serve people with disability in Cuenca. In fact, disability-related CBOs in Cuenca experienced some tangible results in 2008 as a result of the Ecuador sin Barreras campaign. These centers include SPD, ANA, the regional office for CONADIS, and El Centro de Protección para Discapacitados (The

Center for the Protection of Disabled People, or CEPRODIS). SPD and ANA have both received direct services, support from municipal officials, and funds for remodeling and equipment purchase. CEPRODIS has also noticed a significant increase in resources, which has enabled it to commence a series of new buildings that will expand their labor force training programs. However, one staff member at CEPRODIS explained that while financing for construction aided in the mission of disability organizations in Cuenca, it was insufficient. She felt that the government is often quick to offer money for construction since it has tangible and symbolic effects, but rarely invests in human capital. She wished for more money for specific programs, such as expanded bus service for clients and staff retention.

However, the resources available to people with disabilities in southern Ecuador were very limited prior to 2005, which predates Fernando’s time as director. According to an ANA member named Paula, who has partial vision, the local CONADIS office started as a service of volunteers. She described what it was like to work at CONADIS soon after it was established in the early 2000s, and how it related to her realization about rights for people with disabilities.

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I worked for two years at CONADIS as a volunteer, and so I spent time with people with all types of disabilities which made me stronger, and I was able to stop crying about the suffering. I’ve seen the worst cases of children that have never spoken and do not move. So, I would say no, thank God that I have had the opportunity to have children, to experience life and so that’s what stays with me the most. I spent two years working with all the people, delivered wheelchairs, and that was how CONADIS survived -- through the volunteer spirit of a few people who had family members with disabilities, whatever type of disability until the government saw the necessity that they had to have a responsible person and who gets a personal benefit since no one could for eight or even four hours. For example, I would go and open the office, but then I would have to leave for some reason or another and it would close, or another girl would stay but that is not the same as being responsive each and every day.

Paula pointed out that there were no salaried positions, and so the office was unable to provide a reliable and dedicated service to people from the province of Azuay. Such challenges are common to nonprofit organizations as they start up, but CONADIS was actually a government agency with minimal funding. The regional office in Cuenca had to wait for several years before securing sufficient funds to pay permanent staff.

Nevertheless, people in great need with nowhere else to turn came to Cuenca without any guarantee of services or aid.

The sentiments of my informants in Cuenca revealed a mix of healthy skepticism and hope with regard to the ESB campaign. Many were wary of promises that had not been met by past presidents, and recognized that no matter what occurs in Quito, Ecuador is still rife with corruption and thus slow to change.50 On the other hand, a sizeable proportion believed that the Correa administration has already achieved more than they believed that they would see in their lifetimes, and expressed pride in having a person

50 Along with Venezuela and Haiti in Latin America, Ecuador ranks as one of the most corrupt countries in the world during 2005-2008, according to the “corruption perceptions index” from Transparency International.

223 who uses a wheelchair as the Vice President. Moreno provided a sense of collective dignity that all disabled Ecuadorians could share.

Fragmented Biosocialities

As state institutions like CONADIS produce categories based on pathologies, these new categories are resisted and internalized in diverse ways (Rapp 1999). In this section, I discuss some of the tensions that have arisen for community-based organizations advocating for disability rights in Cuenca as they adapt to the newfound attention from the Ecuadorian government. These groups have forged “fragmented biosocialities” (Guell 2011) within and between people with different types of impairments whereby biological anomalies serve as the basis for grassroots political action. I found that the biosocialities that unite these groups are also fragmented by medical diagnosis, class, and gender differences (Guell 2011: 390). The validation of impairment promoted by the government agencies has been reproduced by community- based organizations as a method for enrolling members.

As welcome as governmental support was for members of SPD and ANA, they realized that the support depended on the current political climate. Like their counterparts in other countries, they have played an increasing role in both contesting and participating in the production of biopolitical knowledge and technology that have been promoted by medical professionals and institutions like CONADIS. For the most part, these groups embrace the socio-political model of disability that rests on the rejection of their impairment as a problem to be fixed.

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Associations of disabled people throughout Ecuador emulate national certification practices by requiring the same materials CONADIS demands of its clients. Like most

CBOs working with disabled people throughout Ecuador, SPD and ANSA emulate the processes of certification practiced by the state. For example, at one association the formal procedure for joining includes submitting photos, copies of the cédula and carnet, a formal solicitation to the president, a list of references, a fee of $10, and a medical verification of a visual disability.51 The use of such cards is often tactical, especially for those who have a hidden disability. Without an obvious impairment, people often need to flash their carnet in order to prove that they are actually disabled. Bank tellers, bus drivers, health workers, and other social gatekeepers often suspect that someone is trying to cheat the system if they do not see the carnet. These days, the legitimacy of impairment depends on proof of certification.

Leaders of community organizations have found themselves promoting potentially contradictory messages. On one hand, technologies of certification make them agents of the state in some sense as they require documents in such a way that mimics

CONADIS. Community advocates were involved in advocating for more medical and rehabilitation services – without question, there was a tremendous amount of need.

However, CBOs leaders often found themselves in the position of resisting aspects of the ideologies of rehabilitation promoted by CONADIS while also legitimizing the same

51 The bylaws, which have 41 articles, stipulate the duties, rights, obligations, and nature of association membership –I should note that the complexity of these SPD’s bylaws have been the topic of some good-natured joking about being overly elaborate.

225 technologies of certification. The ideology associated rehabilitation that emphasizes fixing damaged bodies works against the message of acceptance and pride promoted at

SPD and ANA.

Hierarchies of Impairment

Tsing (1994: 9) argues that standard ethnographic practice tends to treat particular categories of cultural analysis like gender as “endogamous, internal” issues. Mindful of this dynamic, I believe that it is important to consider how divisions within the wider community of disabled groups are linked to both internal conflicts but also wider regional, national, and global influences. I came to realize that groups organized around specific impairments tended to forge strong internal bonds, but also links to national organizations and even international entities believed to share common goals. For instance, for ANA members connections to blind advocacy groups in Quito and in Spain were important in infusing new knowledge and creating alliances.

On a more local level, considerable effort was invested in protecting and enhancing the internal fortitude of specific organizations through the creation of welcoming community environments. One of the ways that these protected environments, or second families, are formed takes place through out-group differentiation. ANA members made strong differentiation between not only sighted and non-sighted ways of being in the world, but also between physical and visual impairments. Informants from ANA made it clear that they saw themselves at the top of the hierarchy of impairment (Deal 2003). As they compared themselves to other

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Ecuadorians with physical disabilities, they proudly asserted how they were the most capable of living independently, despite not being fully sighted. Mariela explained to me the superiority of being blind. “Of all the disabilities, to be blind is the best,” she said,

“because you can study, marry, work or if you can’t do something you can ask for help.”

In her mind, not being able to walk (to be a discapacitado) or communicate (for those with auditory or intellectual impairments) was much worse. What made Mariela’s opinion stand out was the fact that she came from a household full of disabled members, but her basic sentiment was mentioned by several people.

The evidence from speaking with members of SPD and ANA suggests that one of the primary ways that disability rights are conceived in Cuenca is through accessibility requirements of impairment-specific groups. These needs are intimately connected to the lifeworlds of the members based on longstanding experiences of social and spatial exclusion. Mariela expressed the idea that people of specific impairment groups coalesce around common interests by using the dicho (saying), cada uno va llevar el agua a su molina. While this literally translates as that each one is going to bring water to their mill, its meaning in this case is that each group is going to look after its own requirements. The members of these community organizations have spent years cultivating internal solidarity and fighting for the rights of their constituents. They have created accessible spaces that cater to the specific needs for people with similar impairments, which have led to the social formation of “second homes.” A mural that adorns the outer walls of the compound at ANA is shown in Figure 20. It shows a novidente walking with a cane being ostensibly guided by a sighted woman.

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Figure 20. Painted Mural at ANA's community center

The message included in the mural offers a vision for cooperation and solidarity.

Translated from Spanish, it reads: “the value of solidarity is to have the courage to act with a sense of community – today for you, tomorrow for me.” The message suggests that by working together, the community can achieve much more than individuals operating in isolation.

In some cases, there is more than ambivalence towards other disability organizations in Cuenca. I occasionally heard in these stories intimations that tended to valorize personal experiences and denigrate people with other types of impairments. For instance, the pride in being a novidente spilled over into reproducing negative images of

228 people with physical disabilities (físicos). Depending on the context, these perceptions can range from subtle joking to outright suspicions and accusations. Such tensions make the role of Vice President Moreno and local leaders more difficult since they are assumed to align with the people with whom they share limitations. Moreover, several ANA members suggested that they shared perceptual worlds that were qualitatively different. I often heard that it would be logical to assume for Moreno to look out for físicos.

Similarly, the blind leader of CONADIS was assumed to favor novidentes. In these examples, the notion of “nothing about us, without us” is murky since there is suspicion that people with differing impairments cannot speak for others. These tensions point to a broader concern regarding disability rights: how does the disability label translate to identity and awareness? The polysemic nature of the term “disability” creates tensions around collective mobilization. The majority of ANA members do not see themselves as a “person with a disability” in terms of self-identification. Even among SPD members, it is common to identify by one’s impairment rather than under the term “disability.” Some

SPD members are clearly uncomfortable with the term “disabled” given what they imagine to be a negative connotation. Thus, the term “disability,” especially in a supposedly empowering, rights-based framework, appears to be imposed from external agents.52

52 See Cruikshank (1999) for a critique of naive readings of the concept of "empowerment."

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Emerging Contradictions in Forging Productive Citizens

Luis Gallegos, Ecuador’s UN Ambassador, served as the current chair of the Ad Hoc

Committee on the Convention of the Rights of People with Disabilities from 2002 to

2005. Representative Gallegos spoke about the importance of international recognition for disability policy:

Well, I was very proud that Ecuador received the Franklin Delano Roosevelt award. It's the first country in Latin America to receive it. I think that demonstrates a leadership role of Ecuador in Latin America. It also represents the worldwide attention to this subject. I think we have a joint vision between all of us who work in this field. We have to have a social change. Our societies must change in order to integrate people with disabilities into the mainstream of societies and make them active participants in our societies. We have to integrate our societies because if we do not do that, we exclude whole groups and no society is whole until all its components become part of it.53

In contrast to earlier constructions of the body that the ill or disabled comprise a threat

(Waldby 1996), Gallegos’ comments emphasize how the exclusion of some parts of the populace threatens the health of the social body. More importantly, Gallegos stresses the need for social change as a prerequisite for “active participation” and integration for people with disabilities. Gallegos speaks to the idea that Ecuador cannot be whole without the active involvement of productive disabled citizens.

I suggest that three strategies– employment programs, micro-enterprise, and computer training – represent new techniques for creating productive citizens capable of working. Such strategies have been labeled by Dean (1995: 560) as practices of “self- formation,” aimed at “cultivating” personal attributes conducive to becoming a worker – or more specifically, not unemployed. Individuals with disabilities are personally

53 http://www.disabilityworld.org/01-03_03/news/adhoc.shtml

230 responsible for rehabilitation in order to be job-ready and to apply for jobs – even though the cost of rehabilitation may be prohibitive for their family, and they face a virtually closed job market.

Theories of governmentality would suggest that the ESB campaign intends not merely to govern impairment through biopower, but also to alter the way that

Ecuadorians – both disabled and non-disabled – think about disability (Tremain 2005a).

The state of emergency brings with it a sense of impatience in remedying a social problem which has paradoxically been identified only recently. While new technologies of government (e.g. hiring preferences, design requirements in the built environment, benefits) may be a necessary part of encouraging inclusionary practices, it is critical to recognize how these technologies create new expectations throughout Ecuadorian society. Fundamental changes in the way that people think and conceptualize disability will be the ultimate determinant of social inclusion.

The changes brought on by the ESB campaign have placed Ecuadorians with disabilities in a new type of bind. Even as they remain objects of pity and shame, there is a new set of expectations for them to enter the formal labor market. In most of Ecuador’s history, a “disabled worker” has been an oxymoron, but now, employed people with disabilities comprise a new category of personhood. The state has mandated that people with disabilities become active, economically productive citizens. At this particular historical moment in Ecuador, we can ask whether these new discourses constitute the conditions of possibility for the category of disabled worker (Foucault 1971: 44-45). It is also useful to think about how the production of disabled workers (such as through hiring

231 quotas) compels businesses, customers, and institutions that regulate these interrelationships (i.e. attorneys, architects, etc.) to adjust their conduct.

The central paradox emerging in these narratives is that as state policies toward social inclusion have flourished, the dream of having an independent life has remained as elusive as ever. In other words, inclusive social policies have exposed some of the underlying causes of social exclusion. Yet, while disabled people have begun to envision a new role for themselves, such as business owner or professional, little has changed in the attitudes of most non-disabled Cuencanos. As some people with disabilities have begun to assert themselves by applying for jobs, entering universities, and demanding services with their carnet in hand, they are often met with indifference or continued rejection. In the following three examples on livelihoods and economic independence – hiring preferences, micro-enterprise, and the creation of productive workers – there is a critical tension between the promotion of inclusive disability rights and pervasive cultural barriers about the limitations of people with embodied differences and their ability to be independent members of society.

The Uneven Effects of the ESB

Earning a livelihood was the single most common source of frustration for disabled Cuencanos that I heard in interviews. Most of the people who had jobs had one of three characteristics: an impairment acquired later in life, middle or upper class status or palanca that aided them in gaining access to jobs, or a minimal physical disability.

Many members of ANA and SPD described the challenges in obtaining employment in

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Cuenca, even when they were qualified. As ANA’s librarian Jose Antonio put it, governmental publicity campaigns “won’t do anything for disabled people in Cuenca.”

He pointed out that nearly all of his colleagues with university degrees had been unable to find work, and that the Vice President’s campaign is not going to change discrimination from employers in Cuenca. His sentiment neatly sums up the despair and pessimism that many people felt after a lifetime of struggle and rejection.

In terms of the management of the economic security of the Ecuadorian population, a broader problem has emerged in the 1990s: the fact that eight in ten disabled Ecuadorians were unemployed became a social issue. Prior to 1996, when

CONADIS started collecting its data, unemployment for disabled people was not considered an actual social problem. Disabled people were not expected to work, but instead were mostly supported by their family or required to solicit money through charitable donations – in many cases, this amounted to panhandling.

One government policy to ameliorate this high rate of unemployment has been the implementation of quotas for hiring disabled workers. Companies and public agencies must have a certain percentage of disabled members in their workforce or pay fines. Even with these hiring preferences, according to CONADIS data the unemployment rate for disabled citizens has remained virtually unchanged. While part of this can be explained by local corruption, it also has to do with lingering discrimination toward impaired workers. When I asked a non-disabled woman, Margarita, about the ESB campaign and the promotion of employment opportunities for disabled Cuencanos, she was skeptical.

Margarita explained that even though people have begun to conceive of disabled people

233 in a slightly different way, there is little chance that they would actually be hired by local business owners. Some changes have occurred, but in her eyes, they have been minimal:

Well the problem is that in recent years we have seen a change – yes, we could say that they are trying to include people with disabilities, but we could also say that it’s more of a philosophy, something that’s in the mind but hard to put into practice … unfortunately in our society here in Ecuador, in Cuenca, they are totally closed or there still the idea that when they see a disabled person and say: ah, poor thing, I'm going help you! They are embarrassed or sit there staring for half an hour and acting strange, saying things like ‘My God where did they come from?’ So, I think we can say that society here is still not used to this new way of thinking, still there not has been a mental change or at the level of understanding, still we have not yet achieved that. I think we're still a long way, something small has changed, yes, [but] I think it society lacks awareness to society, quite a lot really.

Margarita pointed to the discrepancy between good intentions and actual changes in attitudes and practices. She confirms the idea that strained social interactions and stigma discussed in the previous chapters play an important role in how disabled people are treated, both in general and in terms of their appeal in the labor market. Without bridging the perceived social distance between disabled and non-disabled people, employers prefer to pay fines or figure out other ways of evading legal requirements for hiring preferences.

Under the surface of courtesy and propriety, Margarita reproduces a commonly-held perspective about the pervasive conservatism of Cuencanos. In her opinion, much more education and public awareness is necessary for people to leave behind the myths they hold about individuals with impairments.

If job discrimination has proven to be a barrier in securing economic independence for disabled Cuencanos, then a strategy that does not rely on direct hiring might appear to be a better alternative. Accordingly, a second approach to livelihood has been the promotion of micro-enterprise strategies. Both SPD and ANA have attempted micro-enterprise projects aimed at creating start-up projects from within their

234 organizations. For example, SPD received funding to start a sports apparel business based on their premises. As it was explained to me, the central challenge to date has been figuring out a way to market their work.

The third area that demonstrates the contradictions inherent in inclusive government policies comes from the recent surge in resources dedicated to computer training and education in Cuenca. At SPD, classes that teach community members to use computers expanded greatly in 2008. The logic behind these programs rests on the idea that there is a digital divide between disabled and non-disabled workers. Ideally, learning how to use computers will teach members of community organizations to better secure employment and to acquire skills valued by local employers. As a strategy of neo-liberal, decentralized governance, such programs are state supported but operated at community- based organizations. Hosting them at such organizations ensures that the classes are accessible and distributes resources away from public agencies.

Questioning the value of the classes for effectively training disabled members of

SPD does not mean that activity is not worthwhile. One participant explained that the courses had opened up a new realm of meaningful social contact, and as someone who rarely had the opportunity to spend time with anyone outside of her family, the classes were “fantastic.” They are free, accessible, and taught by sympathetic community volunteers. Other SPD members related that they had tried to take “normal” classes – i.e. open to everyone – and that they were held at inaccessible locations and were too expensive. Although I would call into question broad claims about job preparation,

235 opening a space for meaningful participation into the increasingly important digital realm can be considered a key component of participatory citizenship.

In sum, there is a mismatch between everyday experience of discrimination and stigma, and highly visible symbolic actions that decry exclusive practices. The state has shown itself to be only marginally better at providing economic opportunities for people with disabilities. Nevertheless, the public discourses promoted by ESB suggests that individual subjects can cure themselves, rehabilitate, fight for accommodations, and find jobs on their own: if they mold themselves accordingly, they too can become ideal productive workers. The problem for many of my informants was that the ambitions of the ESB campaigns outpaced what they envisioned as possible in Cuenca.

Conclusions

Governmentality as a set of political practices highlights the ways in which institutions, groups, and individuals regulate and manage people with disabilities. From the preceding discussion, it should be clear that the Ecuadorian policy toward social inclusion for people with disabilities has opened up as many questions as it has solutions.

From my analysis of governmental documents and the narratives of disabled

Ecuadorians, inclusive policies promoted at the national level have been altered and redefined through encounters with local power structures and communities with established ties around the collective identity of shared impairment. Allowing for limited types of social inclusion also obscures attention away from the economic resources to make a significant impact on the quality of life for disabled citizens. In this way, attempts

236 at inclusion can end up reinscribing the exclusion of disabled communities. While it is credible to assert that some progress has been made on improving public awareness around disability and some minor financial investment, from a historical perspective the more important changes may be new expert technologies for counting, normalizing, and administering bodily differences (Hacking 2007).

Biopolitical campaigns such as the massive enrollments of disabled citizens have inculcated new ways of governing disability in two major ways. First, issues that

Ecuadorians with disabilities face have been acknowledged as legitimate and worthy of attention. Overt social neglect and isolation has been officially decreed as unjust, and new technologies of law and governance have been proposed. Within a relatively short period – roughly fifteen years – disability issues have gained prominence. The production of rehabilitated, educated, and employed disabled people has become a new objective in the forging of Ecuadorian citizens.

At the same time, the delimiting of disability as a problem has exposed startling statistics about disabled Ecuadorians that make substantial material improvement difficult at best. Eighty percent unemployment, limited schooling, and a lifetime of being treated as a dependent member of society present formidable barriers to greater social inclusion.

Moreover, continued resistance in the form of persistent stigma, reluctance to fulfill employment quotas, and ignorance about the nature of bodily difference undermine governmental action. In the next chapter, I discuss emergency technologies of governing disability have affected the embodied and collective nature of reconstructing life after disabling injuries.

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CHAPTER 7 – EMBODIED DIFFERENCES AND DISABLED SUBJECTIVITIES

People must, in whatever ways make sense for them, accommodate bodily exigencies, establish their own capabilities, and rewrite their futures. These social aftershocks following bodily changes impact on and interact with other defining components of personhood. (Manderson 2011: 30)

Enrique is a well-known fixture in Cuenca’s downtown area who sits on a skateboard and solicits money, day after day, from cars and pedestrians. As I discussed in chapter 4, Enrique transgresses deep-rooted physical and social barriers that shape daily life for most Ecuadorians with disabilities as pushes himself along the narrow sidewalks and intersections with his thickly gloved hands. He begs from nine in the morning to five at night, with a lunch break around one in the afternoon. He stands out in the street for three reasons: his deformed lower body, his outgoing street personality and because he is black in a city with very few Afro-Ecuadorians. After a few months in Cuenca, I initiated a friendly relationship that involved casual chatting as he solicited money on the street.

Upon spotting me, Enrique would often say, “Hey, amigo, how has it been going?”

(¡Hoooola amigo! -- ¿cómo has pasado?) in a drawn-out, sing-song accent, vigorously shaking my hand with his calloused hands.

When I had the opportunity to conduct interviews with wheelchair basketball players several months after meeting Enrique, I was surprised to learn that he had played with the team for several years. I had assumed that Enrique could not afford a wheelchair.

He was, in fact, one of the finest disabled athletes in Ecuador, and had been a championship-level paralympic swimmer. When I attended practices, Enrique clearly stood out as one of the best basketball players on the team and was extremely adept in his

238 wheelchair. His prowess on the court as a wheelchair user diverged starkly from his daytime activities begging on the street. To make a living in the street on a skateboard, he has learned to transmogrify from athlete to street beggar through shifting his mode of transport, self-presentation, and attitude.

To understand the forces at play in Enrique’s strategic self-presentation as a person with a disability, I consider the relationship between managing disability on a personal level and the wider meaning of bodily differences in Cuenca. A deeper analysis of Enrique’s case demonstrates that he shares a great deal with disabled Cuencanos. For instance, Enrique relies on some type of technology to meet the basic functions in his life; he uses both a skateboard and a wheelchair as mobility aids. He operates largely outside of the biomedical health system in Ecuador since he has neither the economic means nor the desire to take part in any form of rehabilitation. Enrique’s strategies of self- presentation are also closely tied into local narratives that circulate about disability including themes pity and dependency, but also about triumph. Like other disabled

Cuencanos, his self-conduct is inextricably linked to the limitations of his body. These three factors – technologies, public narratives, and techniques of the body – are crucial to understanding how disability is managed in Ecuador.

In this chapter, I focus on how disabled subjects are constituted through their bodies. Drawing on frameworks from the anthropology of embodiment and disability studies, I argue that disablement is not a stable medical or biological characteristic, but rather is a long-term, often unstable and evolving process that involves retraining one’s body and assuming an altered identity. Through analysis of narratives that show how

239 disability is managed over time and in the context of social networks (Das and Addlakha

2001), I demonstrate how disability is a socially constituted phenomenon that is collectively managed through kin-based and social networks, not merely through medically-based rehabilitation therapies or biomedical interventions. I suggest that disabled identity is enacted through the cultural training that takes placed through embodied practices, or what Lenore Manderson terms as “rehabituation” (2011: 96).

More than rehabilitation, rehabituation focuses holistically on how one’s habitus must be newly constituted following an accident, injury or other bodily disruptions. Even for those who were born with impairments, the appearance of new technologies can lead to new regimes of bodily training that rehabituation suggests. Living with a disability, according to the Ecuadorians I spoke with, is a dynamic process that changes over time and shifts based on the practical experience of coping with bodily limitations, social stigma, changes in economic status, and parameters of conduct in households and wider social networks. This chapter aims to analyze how self-conduct for people who have experienced bodily disruptions is mediated by cultural expectations, adaptations to technological devices, and new social networks. It is not a psychological investigation, nor a medical explanation, but one that relies on thinking about how people adopt a disability identity and manage their impairments.

More broadly, this chapter draws on the paradigm of embodiment (Csordas 1990,

1994) and the phenomenology of impairment (Frank 1986; Hughes and Paterson 1997;

Frank 2000; Shuttleworth 2001) in order to capture the lived experience of being disabled in Ecuador. Here, an ethnographic approach using the lens of embodiment is helpful

240 since it focuses on how people construct meaning from using their disabled bodies as they engage in social activities, not merely on the body in an abstract sense (Willis et al.

2001). Embodiment as a heuristic tool (Strathern 1996) is particularly crucial in making sense of subjective accounts of disability that express both a hyper-awareness of corporeality and unified descriptions of subjects (Paterson and Hughes 1999).

I begin by linking the notion of technologies of the self (Foucault 1988) with techniques of the body (Mauss 1973) in the context of bodily difference and disability. I then offer a broader definition for “rehabilitation” that incorporates the collective and performative aspects of disability. I focus on how individuals attempt to reshape themselves at various levels: personally, within cooperative partnerships, within their household, and collectively within community organizations and athletic teams.

I differentiate here between the colloquial notion of technology (i.e., the use of tools and materials objects) and its wider social theory definition as procedures and conventions. For the sake of clarity, I refer to the former as “adaptive technology,” (e.g. wheelchairs, canes, etc.). Goggin and Newell (2003: 11) capture the divergent aspects of technology aimed at disabled consumers:

While the wheelchair, the cochlear implant, the mobile telephone, and the Internet are potentially liberating, they are also inherently controlling. For example, the social relations of the wheelchair as a technological system effectively control people’s access in the community, the type of wheelchair they have, and their acceptance in society, and even provide a lowly platform for them to look up at “normal” people, or rather, the so- called normal people to look down upon them.

Adaptive technology can be simultaneously enabling and restrictive. Goggin and Newell cleverly suggest that the vantage point from which people sit in a wheelchair in fact should not be discounted as it structures interpersonal interactions. These two ways of

241 thinking about technology are intertwined for people with disabilities. The final part of the chapter analyzes wheelchair basketball players as “cyborgs” (Haraway 1991) that meld body techniques with adaptive technology in their athletic performances and lifestyle.

Disability and Technologies of the Self

Although its prevalence has slowly begun to erode in some areas, biomedical forms of rehabilitation remain the dominant response to dealing with disability in many parts of the world, and Ecuador is no exception. As it is conventionally conceived by biomedicine, rehabilitation is defined as a therapeutic intervention from a professional providing a service that will make up for a deficiency or impairment (Albrecht 1992).

Disability is seen as any type of correctable loss that can be addressed through engineering solutions applied to individuals; for example, prosthetics used to compensate for amputated bodies (Tanenbaum 1986). Professional interventions come in the form of technological applications ranging from medical procedures to techniques of psychological counseling and training individuals to use their bodies in new ways. In most cases, such interventions are aimed at creating the conditions for people to live more independently.

The assumptions that underpin the rehabilitation model have been criticized for sustaining the position that people with disabilities are in need of a cure or treatment.

This idea has come under attack from several different camps, including advocates from the independent living movement (Lifchez and Winslow 1979; Zola 1982b; Brisenden

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1986), disability studies theorists (Charlton 1998), and international activists who promote “community-based rehabilitation” (Helander 2000). The powerful influence of social models of disability originating from British sociologists (Oliver 1990; Barnes

1996) as a way to critique medical models of disability central to ideologies of rehabilitation had the effect of deemphasizing the role of the corporeality in disablement

(Shakespeare and Watson 2001; Staples 2011). However, more recently it has been acknowledged that the pendulum has swung too far away from the primary experience of bodily impairment (Garland-Thomson 1997; Hughes and Paterson 1997; Antelius

2009).54 Indeed, it is important to acknowledge, particularly where structural violence and poverty severely impact the quality of life for disabled communities, that better and more medical services are still extremely important (Grech 2008).

In this dissertation, I take a slightly different path that builds upon the centrality of embodiment but is also more closely connected to the social context of personhood as it relates to bodily differences within a population. Biomedical interventions do play a role in the meaning of disability in Ecuador, but I contend that we need a broader framework for understanding the social significance of disability. I argue that the rehabilitation model promoted by the Ecuadorian state that imports Western models of independent living and body repair conflicts in some ways with the collective manner in which disability is managed in Cuenca.

54 The recent work of Susan Stryker on “somatechnics” offers new conceptual approach that places the body at the center of critical social and cultural inquiry (e.g. Stryker in press), focused on the role of interactions between human and nonhuman elements in making up bodies.

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In contrast to traditional definitions that limit the management of impairment to rehabilitation, I think about the transformation of living with a disability in terms of

“techniques of the body” and the related concept of “technologies of the self.” Analyzing disability as a transformation in techniques of the body (Mauss 1973) calls attention to the ways that all humans are subject to cultural modes of corporeal training and maintaining health (Kohrman 2005). Such techniques consist of the whole range of material practices and skills for individuals as well as interpersonal interactions, which vary cross-culturally and which Bourdieu (1977) terms habitus. Putting rehabilitation in a broader framework for understanding how people learn and relearn new ways of using their body through their lives helps make sense of the way that an injury, illness or disability affects self-conduct.

Foucault (1988) draws on the Aristotelian notion of ethics that deals with self- treatment rather than moral codes in discussing of technologies of the self. In contrast to other types of technologies focused on production, sign systems, or power (Foucault

1978, 1994[1973]), Foucault posits “technologies of the self, which permit individuals to effect by their own means or with the help of others a certain number of operations on their own bodies and souls, thoughts, conduct, a way of being, so as to transform themselves in order to attain a certain state of happiness, purity, wisdom, perfection or immortality” (Martin et al. 1988: 18).

Distinct from notions of identity, technologies of the self describe how an individual acts to manage well-being, or in other words, the individual’s ability to know, master, and care for oneself (Rose 1996b: 135). Rose (1996b: 131) expands the notion of

244 technologies of self by focusing on how the “changing relations of subjectification” depend on the historical practices entailed in “regimes of the person”. These determine different modes of being and ways of relating to oneself as a subject. I draw on Rose’s concepts of technologies, authorities, and teleologies to link rehabilitation to wider social forces that assign meaning to bodily difference and shape disabled subjects in Ecuador.

The disabled subject position, as it has arisen in the 20th century has always been conceived as a site for managing abnormality. To be disabled means to be the living embodiment of a corporeal problem. People with disabilities are united in some sense by the common experience of being treated as a population in need of medical management.

As in other places, rehabilitation in Ecuador has been the predominant way that physical impairment has been turned into a manageable problem.55

In contrast to other subject positions where the management of conduct is intended to improve or change individuals, disability is also viewed within a discourse of prevention. As I discussed in chapter 6, prevention is one of the key pillars of the Correa administration’s approaching disability on a widespread scale. The stated goal is to prevent disease and disability from occurring in the first place. Although these goals are often supported by Cuencanos with disabilities – they “would not wish their condition on anyone else” – they also carry certain risks. Prevention discourse can imply the possibility of eradicating impairment altogether. However, the argument in chapter 6 about how human differences are produced through the human sciences as well as

55 See (Wilson-Braun 1992) for a reflection on Ecuador’s system of occupational therapy.

245 economic activities implies that disability may shift in form over time but cannot be eliminated. Certain diseases may be controlled and prosthetics may address functional losses, but disability as socially produced cannot be eradicated in any meaningful sense.

Prevention discourses tend to reinforce the notion that those deemed problematic are incurable, surplus populations that burden society (Biehl 2004; Fassin 2007). It opens the door for people with disabilities to be written off as irrelevant in the hope that dealing with future populations ought to take priority.

Promoting independent living for disabled citizens entails extensive use of technologies under the assumption that humans are malleable objects. These technologies are crucial components in regimes of the person in their effect on people with disabilities in Cuenca. In particular, my interviews with younger members of SPD and ANA suggest that special education programs and newer models of training have placed disabled

Ecuadorians in a position where they are increasingly being guided toward taking responsibility for their own future. With Viviana and Pablo, I gathered the feeling that there is an underlying assumption that a disabled person should strive toward self- improvement by availing themselves of resources such as adaptive technologies, sign language, and other educational opportunities, and modes of using one’s body such as cane-based navigation, self-care, and physical rehabilitation techniques. According to the missions of community-based organizations in Cuenca, these technologies aim to create productive, independent individuals with improved levels of self-esteem, acceptance, and industry. To live independently as a blind Ecuadorian, for instance, one must be able to

246 use all appropriate technical aids (canes, software, etc.), be able to seek out assistance, secure employment, and navigate through their physical environment.

A critical question about power asked by Rose is:“[w]ho is accorded or claims the capacity to speak truthfully about humans, their nature and their problems, and what characterizes the truths about such persons that are accorded such authority?” (Rose

1996b: 132-133) One of the central battles in the fight for disabled rights in the late 20th century was fought over the lack of control that disabled people had to determine their own treatment and life choices. The authority to make decisions rested with their family members, medical professionals, or counselors, but rarely with people with disabilities themselves (Pfeiffer 1993; Barnartt and Scotch 2001). Indeed, the relationships between the CBO staff/members, therapists/clients, and doctor/patients and the ethical and legal codes that govern these professions play an important role in decision making around disability in Ecuador. While professionals (physicians, therapists, lawyers, etc.) had considerable authority to articulate the meaning of disability in Ecuador, for many it appeared that the ultimate authority remained with Dios (God), or representatives of the will of Dios.

During interviews, my informants would often point to the ceiling, look at me with a knowing smile, and say “gracias a Dios” (thanks to God). The phrase gracias a dios could be used to express gratitude for many aspects of disability including the ideas that one’s suffering was nothing compared to how bad other may have it or that the recovery from illness or injury had a divine component. In research with women in

Cuenca suffering from lupus, Miles makes a similar connection between “moral

247 discourses of pain and suffering in Catholicism and elaborated in the concept of female sufrimiento” (suffering) and illness narratives (2010: 128). At times Catholic explanations were employed to frame disability as a psychological challenge that has been given to people with impairments. In other words, only God can choose who has or does not have a disability, and it is up to the individual to accept what they have been given. The idea suggested by Miles---that a chronic illness can be a “gift from God”--- was confirmed in disability narratives I gathered in Cuenca (Miles 2010: 120).

The life objectives of a person, or what Rose labels “teleologies,” are also important sites of contestation. Ecuadorians with disabilities are presented with modest goals for what determines a healthy and happy life. Coupled with religious authority indicating that they ought to be grateful to be alive, their life goals revolve around self- effacement, humility, and moderation. Disabled subjects in Ecuador are raised with limited expectations for life: to be happy, satisfied that they are alive and do not have worse impairments, and to receive proper medical care. They are taught not to expect much more than to be able to survive. The notion that employment ought to be part of being a disabled Ecuadorian, for instance, does not fit into the traditional ideologies or models of personhood when one has a meaningful bodily difference.

For the remainder of the chapter, I delve deeper into ethnographic cases by thinking about how regimes of the person can help us conceptualize the conduct of being disabled in contemporary Ecuador. It is important to keep in mind the limitations of these models in Ecuador, where the household plays such a crucial role in determining how disability is managed. I turn next to consider how the notion of “rehabituation” may

248 offer a more compelling way to explain how people recover from injuries and manage disabilities over their life course.

Contested Narratives of Disability and Rehabilitation

I believe that disability is only what one feels, nothing more. -- Eugenia, 56

Perhaps the most direct way to pinpoint the broader techniques of self that shape disabled subjects is through analyzing narratives of disability as they are told by people with disabilities themselves. In the following cases, I demonstrate how technologies, authorities, and teleologies can be identified in narratives that describe the self-formation of disability identity through the process of injury, illness, and “rehabituation.” In place of the notion of rehabilitation, Manderson argues that people forge new types of embodiment following disease, injury, or disablement. These process can be called

“rehabituation – embodied learning involving the recovery or recreation of habitus”

(Manderson 2011: 96). While rehabilitation refers to formal tasks aimed at restoring order and function, rehabituation involves much more: long-term training, new attitudes toward self and capabilities, and eventually a reformulated sense of self.56 What I find especially compelling is that rehabituation recognizes the fallacy promoted by ideologies of rehabilitation -- that a prior life can be recovered. People I interviewed usually realized

56 Manderson complicates Leder’s (1990) argument that people typically take for granted their body when they are healthy, but become hyperaware with dysfunction or disease. Manderson (2011) suggests that bodily awareness is more subtle and less easy to generalize, as embodied states vary considerably across age, gender, and other differences.

249 that their past lives were not something that they could ever return to and instead focused on creating new subjectivities over a period of years. Rehabituation entails adjustment to a new life that is made possible by changes in the way that individuals think and care for themselves.

Two central tropes that show up in these narratives are pervasive with people I spoke with in Cuenca: dependence and autonomy. As Antelius (2009) notes, these two tropes are often in tension with one another in narratives of disability. People with disabilities often describe the move from a state of dependency to a situation with more autonomy. However, it is crucial to differentiate what it means to be autonomous in a

Western context such as Sweden where Antelius studied disability, and in Ecuador, where autonomy has more to do with be able to fulfill roles as part of the household than it does with living “independently.” The idea that adaptive technology, paid personal assistants, and extensive training could enable someone to live an autonomous life does not match the emphasis on integration within the household that is so important in

Cuenca.

In the early months of my fieldwork, many of my inquiries involved making sense of narratives constructed through conversations and interviews with people like Joaquín.

How did SPD members acquire their impairments? How did they come to be part of this community group, and what did it signify in their lives? What role did disability play in the dynamics of their households? For people who acquire impairments, the period of readjustment can cause massive shifts in self-perception and family dynamics. Often but certainly not always, the initial period of trauma was followed by coping strategies,

250 adjustment and some form of acceptance. Social networks shift as people with disabilities lose acquaintances and gain others. Medical interventions produced bodily modifications that led to improvements in quality of life that increased personal independence.

Disabilities can cause people to move from the category of productive worker to being a person with non-productive body. Community organizations provide a supportive environment, a source social capital for people experiencing the challenge of recreating their lives with a new form of embodiment.

Eugenia

For Eugenia, a fifty-seven year old member of SPD, rehabilitation meant that she no longer had a visible disability, yet she continued to strongly identify as a disabled person. I came to know Eugenia quite well after spending several meetings in her home teaching a group of SPD members on how to create an organizational website. Eugenia had a compact build, an energetic presence, and a wide grin that displayed her numerous gold teeth. Eugenia suffered damage to her spinal cord and associated areas of her brain, but had mostly recovered by the time I spoke with her in 2008. The after-effects of her disability are closer to those of a recurring chronic illness, and thus have become invisible and unrecognizable. She was known by other SPD members for her articulate orations and powers of persuasion both within the organization and to outside members.

Eugenia had served in several leadership roles at SPD including Vice President and

Treasurer, and was known to be an unofficial organizational spokesperson. She also had experience working on micro lending for women and a number of other community-

251 based projects. Eugenia’s experience in the medical system illustrates some of its problems.

During our longest conversation, she went into great detail about how she acquired a disability and came to think of herself as disabled. Since Eugenia had described her experience many times, her illness narrative had a particular structure that dramatically highlighted the sense of loss and uncertainty involved in a series of three surgeries. Whereas the first surgery was exploratory, during the second surgery Eugenia contracted meningitis in the operating room and nearly died. She then had a third surgery to repair a nerve that had to be removed down its root. As a result, she lost her ability to speak, walk, and lost part of her ability to remember:

I was left with a type of amnesia … when I was at a meeting and tried to recall a certain word that was clear in my mind, I totally lost my train of thought. This disturbed me and I started to not want to speak at all. I explained to others that I could not really express myself, and so what happened is that for around six or seven years I basically could not participate in public or intellectual aspects of life. Although things are better now, sometimes I am saying something and then I get stuck and can’t get back to what I was trying to say for ten minutes.

Eugenia’s description highlights how dramatically disability can change over one’s life course. She views her condition as both mental and physical, and hidden or visible at different times such as when she had to use a wheelchair. Although she has mostly recovered from these traumatic events, Eugenia explained that she still has lasting effects.

In the year before we spoke, she had to spend a month in bed after intense back pain.

Moreover, she also had aging-related osteoarthritis which exacerbates her other chronic conditions. “I stumble from time to time, which makes things worse – sometimes I’m pain, and then there’s no pain at all.” The way that Eugenia had trouble even describing her experiences resonates with the “radical subjectivity of pain” (Scarry 1985: 50).

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The unpredictable effects of Eugenia’s impairments did not change whether or not she considers herself as disabled. In other words, the bodily condition does not neatly match up with her public identity. Eugenia maintains the right to disavow the idea that disability is automatically debilitating. She labels the effects of her disability as the

“consequences,” which refers to how her disability can be invisible and fluctuating.

Eugenia pointed out that since her condition has improved with therapy, people often assume that she is not disabled. As she explained, “people will come up to me and say, ‘It doesn’t appear that you have a disability,’ and it’s not like that. It’s that I believe that disability is only what one feels, nothing more.” Eugenia feels that a disability is not determined by doctors or any outside authorities, but is a subjective, dynamic experience.

She also emphasized that others should consider disabled people as whole person, not solely through the lens of their impairment. Eugenia further emphasizes how much her family supported through what she called the “emotional, subjective” aspects of the medical procedures and recovery, especially when she was bed-ridden for long stretches.

Eugenia’s situation underscores how disablement is a dynamic process that can shift over one’s life history. She identified as a disabled person even though by some measures she has rehabilitated her body so that her impairment has lessened in severity.

While claiming membership in the disability community can be problematic for people like her with invisible disabilities, she saw herself as no less disabled than any of her peers. Based on the way that her body felt, Eugenia constituted herself as a disabled subject in Cuenca.

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Eugenia’s lack of confidence in biomedical solutions to her disability has led her to alternative and natural therapies. When I returned to Cuenca in 2010, she had completed a thesis on how alternative therapy may help people with disabilities. This accomplishment lent credibility to her longstanding interest in using herbs, natural remedies, and indigenous means of addressing health issues and chronic illness. It was interesting for me to see Eugenia speak to other SPD members about trying different approaches that might complement what was understood to be biomedical approaches to rehabilitation because it felt as if she was selling the idea that people needed to take their health into their own hands. She occasionally made short presentations at community meetings and also shared new information about herbs informally at her home during our website development meetings. More than the rhetoric of cultivating positive self-esteem that SPD tried to promote, I see Eugenia’s insistence on alternative medicine and healing as promoting new techniques for self-care. More broadly, the circulation of alternative healing and the growing appeal of natural medicine offer new, low-cost ways for

Cuencanos to take responsibility their health well-being (Miles 1998a). While I expected to find more situations like these considering anthropologists’ observations of medical pluralism in the Andes (Koss-Chioino et al. 2003), the knowledge promoted around alternative medicine by Eugenia was atypical among people I interviewed.

Norberto

Now I would like to turn to a second narrative of disability and rehabituation, that of Norberto, a wheelchair user in his mid-thirties. Norberto’s story offers several

254 elements that help us understand the relationship between technologies of the self, disability, and rehabilitation in Cuenca. Although I met Norberto early in my fieldwork, it was several months later, after hanging out with wheelchair basketball athletes, that

Norberto invited me to his home. Like many middle-aged Cuencano men, Norberto functions as the head of his household. Prior to our interview, he gave me a tour of his house and farm. His nephews and children giggled at us as he pointed out the family’s rabbits, sheep, and then let me investigate the area where they keep cuyes (Andean guinea pigs). Our conversation focused on things that we didn’t know about each other’s lives:

Did we have farm animals where I lived? What do the cuyes eat? How easy is it to make a living? Later, he took me on a tour of a larger farm higher up the hill from his family’s house and then to the half-built house that he plans to move into once the construction is completed. Norberto explained that he had “run the household” since his brother had migrated to the United States (El Otro Lado).

Norberto had used a wheelchair since he fell from the second story of a building as a twenty-one-year-old. His girlfriend, who was pregnant at the time of the accident, could not handle the dual pressure of caring for a baby and a paraplegic partner, so they split up. Norberto spoke carefully as he described the fall-out from his injury. With a sad voice, he said that his girlfriend decided to keep the baby but not to stay with him. When his daughter was born, Norberto felt as though he had been “stabbed,” since he was unable to start a family. Subsequently, he realized that it was “nobody’s fault.”

Norberto contrasted the mother of his daughter with his current wife, with whom he has a “normal life.” After recovering from his accident, he realized that he could go

255 out, go dancing, and live a complete life. As he showed me pictures of his wedding,

Norberto explained that he had known his wife nearly his whole life since they lived in the same neighborhood, though they got to know each other after he was injured.

Although he felt betrayed by his first girlfriend, he later recognized how difficult it can be for someone to adjust to the reality having a disabled partner. Since his wife never really knew him as an able-bodied person, his use of a wheelchair has always been a central part of their relationship. After our interview, Norberto drove me over to the house that he was in the process of constructing. His new house represents the culmination of his vision for self-care: accessible design, family-oriented, and mostly self-sufficient.

Norberto pointed out the fruit trees and creek running through the back yard, mentioning that this will be very different than the home where he grew up: at that time, he had no light or electricity. Norberto also pointed out the accessible features of the house: zero- grade entrances, wide bathroom doors, and a generally open architecture that would make using a wheelchair much easier. Norberto then took me to meet his fourteen-year-old daughter who lives nearby. Her age serves as a constant reminder of the year of his accident and the existence of an alternative life-path.

After a period of rehabilitation and depression, Norberto was able to participate in social life again. He realized that he would need to make use of available adaptive technologies in order to live a full life, and began to find out how to acquire a wheelchair.

Norberto next decided that would he need to be able to drive himself. He traveled to

Quito to request services from CONADIS in order to adapt his truck so that he could drive on his own, but the staff there treated him poorly; Norberto explained that they

256 acted as if he had some type of mental problem. The tendency of people to equate physical impairment with mental disability was one of his biggest complaints. Later,

Norberto used money that his brother sent him from working abroad in the United States to adapt his truck so that he could drive without using his legs. The technology in his truck enables him to control his vehicle with just his hands. It is important to note his ability to pay for these technologies derives from the remittances sent home by his older brother.

In terms of therapy, Norberto claimed that playing with the wheelchair basketball team has been the best form of therapy for him. He used psychological services in the past, but after a while stopped since he didn’t really see the point and didn’t really have much of a goal. “The therapy that has been best for me, by far has been basketball,”

Norberto commented to me, “and it has given me the desire to live, really.” He explained that basketball has improved his physical range of motion and muscle strength, but more than anything, his mental outlook on life. As much as anything, having the peer pressure to come and play basketball each week made him more accountable than when he was doing his own rehabilitation. Thus, basketball has been a form of mental and physical group therapy. He said that these days he manages pretty well, and doesn’t have too many concerns with coping with his impairment. Norberto now works at home creating wooden figurines that he sells in the tourist market.

Norberto’s story contains elements that are common to many disabled people I spoke with in Cuenca. The way he structures his narratives emphasizes the gradual shift from dependency and loss to a state of triumph and normalization. Interwoven into his

257 story were religious references about overcoming and acceptance. When he acquired his bodily impairment, his life changed dramatically as he went through a period of transition, mourning, and then rehabilitation. Eventually, he regained a new sense of self and acceptance of his new state of being. Throughout these periods of change, Norberto’s life retained a sense of continuity in the areas of religious faith, family, and friends. As I discuss later in this chapter, the rehabilitative power of athletics has been the strongest influence in achieving a semblance of contentment. Norberto identifies more strongly as a disabled athlete than as a person with a disability.

Joaquín

¿Estás tímido? In his raspy voice Joaquín asked me if I was shy, and gestured to me that I should pull my chair into the front row and not sit behind the circle made by the group. Since I had begun attending the monthly SPD meetings, more than anyone

Joaquín had insisted that I actively participate. “Get in front and join us,” he ordered with a smile, “You are part of the group.” Like all monthly asambleas (meetings), the meeting took place on the first Saturday of the month. The May 2008 meeting was unique in that in combined a Mother’s Day mass, a regular business meeting, and a salsa dance party into a long afternoon. Along with other SPD members, Joaquín made sure that I joined in all activities, from personally greeting people as they arrived, to dancing and partaking in tragos of Zhumir, an Ecuadorian liquor we sipped in tiny white plastic cups.

Joaquín acted as a social butterfly during the asamblea taking pictures, chatting amicably, and making witty jokes. As usual, his self-presentation was immaculate: dark

258 hair cropped short, a pen sticking out of his button-down shirt pocket, and thin-framed glasses. As I mentioned in opening chapter 6, Joaquín’s prosthetic hands were what differentiated him from his fellow SPD members. Both of his hands had been amputated in 1985 after he suffered an industrial accident on the job at the electric company. As a result, Joaquín has two prosthetic hands that he termed “mechanical pincers.” The prosthetic devices that emerge from his shirt sleeve in a flesh-colored cylinder attached to a shiny metal base with hook-shaped pincers. Joaquín’s artificial hand mimics the second and third fingers of human hands enabling him to grasp his phone, drive, shake hands, eat, and perform other key activities through creative techniques. For instance, he ate chips at the asamblea by grabbing them one by one from a small plate, placing them horizontally on his right arm that served as a makeshift plate, and eating them directly.

When one of the mothers went up to receive an honorary sash, Joaquín asked me to help him take a photograph with his camera. I wasn’t sure if it was because he needed help, or because it was simply easier to have help. I took the picture for him, and then he actually took some more on his own - which made me doubt whether or not he needed my help in the first place.

In the months that following the Mother’s Day asamblea, I got to know Joaquín more closely through numerous meetings and working with him on creating a website for

SPD. His story powerfully illustrates how an injury can lead to transformation in one’s relation to their family, the state, and their community. I gained the most from a long interview in July 2008 where he narrated how disablement had completely changed his life. Prior to sitting down in the SPD courtyard, I gingerly shook the cool metal hook he

259 extended from his right arm. Joaquín described how he had been forced to retire from his job with the electric company from an amputación bilateral de miembros superiors

(bilateral amputation of the upper limbs). Now in his mid-50s, the accident occurred when he was 34 years old. Following his injury, Joaquín faced depression and had extreme difficulty from the feeling of being dependent. Physically, he could use his prostheses right away but it was the psychological stress that led to wild fluctuations in his mood. Not being able to manage his body made him feel like “less of a man,” and he objected to how his wife treated him a burden more than a partner. Unable to cope with these changes, he divorced from his first wife.

Juxtaposing Joaquín’s story alongside recent national campaigns toward disability rights offers a historical context for the meaning of disability in Ecuador. Joaquín remembered a previous era where having a disability was primarily a source of shame and the basis for discrimination. Two decades earlier, the state had a negligible role in managing disability, and community organizations like SPD were emerging, but only in the largest cities in Ecuador. Joaquín was keenly aware of the “inferiority complex” experienced by many disabled Ecuadorians as well as the persistence of negative labels, physically inaccessible environments, and social barriers. As a retired, remarried, and rehabilitated resident of Cuenca, Joaquín had many advantages over many other people with disabilities, who lack access to health care, face social isolation, and have never worked or had formal education. As he pointed out during our interview, “you have to eat before you can fight for rights.” Having economic security is a necessary condition for trying to achieve abstract goals such as promoting disability rights and awareness.

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At the end of our interview, Joaquín finished by saying “la vida es de caerse y levantarse,” or life is about falling down and getting up. One central message that I heard from Joaquín and others is that anyone can become disabled at any time. People like

Joaquín often stressed that while disability can be an unfortunate condition, it is also an opportunity for understanding the meaning of life or other deep questions.

Eugenia, Norberto, and Joaquin’s stories are unique in their details, but are broadly representative of how rehabituation from injuries is complicated by the changing meaning of impairment, shifting functionality of their body, and revised notions of their life expectations. Like many disabled Ecuadorians, the way that they relate to themselves has been altered by adopting a new subjectivity of being disabled. With Norberto’s story,

I touched on the crucial importance of the household in the management of disability in

Ecuador. I explore the importance of collective management of disability more fully in the next section.

Collective Management of Disabilities: Households and Cooperative Partnerships

The notion of “autonomy” does not have the same meaning as it does in the context of the Global North. The care of oneself cannot easily be separated from the family’s care of itself in the manner that disability advocates often frame the issue of independent living in Europe and the North America. Social agency for Ecuadorians with disabilities is frequently subsumed within the households (c.f. Inhorn and Bharadwaj

2007). Government surveys support these observations since only one in ten people with disabilities receives any type of support from institutions in Ecuador (public or private)

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(Cazar Flores, et al. 2005: 111). In contrast, over half of Ecuadorians report that they receive social support from family members; one third of respondents receive some type of assistance from friends or co-workers. Lack of financial resources and intricate social networks make it more likely that disability will be managed through aid from family members or acquaintances than through expensive adaptive technology. Unsurprisingly, the life objectives of the Cuencanos I spoke with were intimately tied into the collective goals of their households. The importance of the household management of disability is evident from the narrative of Maria, as I learned from interviews and eating with her family in 2008.

Maria had previously described to me that she had a form of muscular dystrophy that resulted in limited use of her legs since she was a young child. Although she learned to walk later than most children, she had been able to walk until the age of around twelve.

She specifically remembers falling while playing basketball at school and described how following that accident, doctors eventually realized that her muscles had begun to atrophy. It was initially undiscovered in part since her particular type is much more common among males.

Her father picked her up daily from work since she could not drive or take the bus; as described in chapter 5, her limited ability to walk prevent her from ascending into a bus. As we drove from SPD to Maria’s house, the main topic of conversation was the mercurial weather. It was one of those days in Cuenca that requires multiple layers of clothing in the morning but by noon, the blazing equatorial sun makes one feel uncomfortably warm. As he does every working day, Maria’s father drove her to and

262 from SPD in his 1978 pick-up truck. The “Kansas City Kings” sticker on the back of the bumper attested to the age of the vehicle given that the American basketball team had been defunct since 1985. In her characteristically soft-spoken tone, Maria asked me if I watched basketball much and if I had enough room with her two crutches. Her father told me that I had better be hungry since his wife was preparing a big lunch.

Watching Maria transport herself from SPD to her house made me appreciate the time it takes for her to get from place to place. As she relied on the support of a wall or crutch to walk, it took her about 15 minutes to make it from the street, up the stairs of the house, and into the house where we tried to fix a computer problem before lunch. Maria talked about owning pets as she showed me the two family dogs and how they liked to bark at the bright yellow canaries that live in a cage in the living room. When lunch was ready, Maria’s mother called over to us and asked, “Do you like Ecuadorian food?” I nodded and she said enthusiastically, “Well, we will be having food from the coast, from

Machala.” Maria’s sixty-six-year-old mother had short, curly graying hair and was wearing a pink plaid apron. With the help of Maria’s older sister Cecilia, she served us typical coastal food - a rich soup with noodles, with lima beans and canguil (popcorn) on the side. The main dish was a coconut based stew with an unknown meat, rice, and a mote (hominy) with a green salad.

After the customary questions about my family and Maria’s family’s impressions of the United States, we talked about what it is like to be a person with a disability and to have someone with a disability in your household. Cecilia detailed the struggles that their family had faced over the years. Maria’s mother talked about how difficult it had been for

263 everyone, and how people hardly ever recognize the care-giving roles that the mother has to do. “What is difficult,” Maria’s mother explained, “is that many people look down on you if you don’t work, even if you have a disabled child … and caring for them is a full- time job.” With sadness, she said with two of her sons died from muscular dystrophy before they reached ten years of age. Cecilia explained that when she was young, Maria and her brothers were too ashamed to leave the house. The social isolation Maria experienced as a child made her current job at SPD all the more surprising according to

Cecilia.

As we ate, Maria’s father watched closely to make sure that I was eating enough.

There was no drink served with the meal, but after we finished, Coca-Cola was poured for everyone in small plastic cups. Although her father talked a little bit about a Peace

Corps volunteer he met in the 1960s, for the most part the women did most of the talking.

He plays a major role in transporting Maria around town, and is very familiar with other members of SPD.

Maria’s situation demonstrates that the process of managing one’s disability involves far more than individual techniques of rehabilitation. Maria’s father, mother, and sister all play complementary roles in helping Maria meet her daily needs and to maintain employment. However, the two women expressed their dismay at the lack of economic compensation or social legitimacy that they receive from caring for their disabled family members. According to some estimates, seventy percent of primary caregivers are women (Dávila 2008). Most common are mothers, spouses, and the oldest sister or daughter. From the stories I heard, mothers were also more likely than fathers to be fierce

264 advocates for their children. Fathers were more often described as offering support and caring, but mothers were discussed as the ones who pushed for inclusive education and for encouraging their disabled children to participate in social activities (cf. Ferguson

2002).

Gendered expectations for children can have a significant impact on the strategies associated with being a disabled Ecuadorian. In contrast to the supportive role played by

Maria’s father, many disabled children experience highly divergent treatment from their parents. This situation was evident in the case of Mariela, a blind woman with severe cataracts. Mariela described the difference between how her mother and father treated her as the difference between “night and day:”

The ideology of my father, for example, was that since I was blind, the only thing that people would give me was love. In contrast, my mother was different: she fought hard for my right to study. These days there are scholarships and things for people like us, but we still depend on our families for many things, whether or not it has to do with economics.

Her father had basically encouraged her to beg on the street for money and to rely on the goodwill of others. Her mother concerned herself with advocating for Mariela, which suggested a common pattern where mothers were the champions and primary caregivers for their children. While economic support was important, it was emotional and logistical assistance that was most appreciated. Many fathers offered loving but patronizing attitudes but were often less involved in direct care. Like Maria’s father, they often helped with transportation and financial support but were less likely to attempt to challenge prevailing expectations about autonomy and empowerment.

Another increasingly common phenomenon involving the collective management of disability comes from children who must care for their disabled parents. Although

265 many older adults with disabilities are treated as inconsequential members of the family, I also came across particularly creative ways that some people have used adaptive technology as a means to care for their elders that allow them to live with more autonomy. One such person was Teofilo, a man in his mid-fifties who had invented several contraptions to aid in caring for his disabled father.

Teofilo invited me to his home one evening in 2008. He was an energetic man in his 50s, dressed in a sharp gray sweater vest. With piercing jet black eyes, he questioned me about my interest in disability before I got a chance to ask any questions. Teofilo found my project fascinating given that he had been trying to generate interest on technological aids for people with disabilities for the last decade or so. Teofilo explained that he used to be a bus driver, but decided to go back to school and earn a degree in systems engineering after his father became acquired a chronic back condition. He had tinkered with contraptions to move people from one room to the other, canes with sensors, and aids for taking showers. At one point, Teofilo shrugged as he said that he had become obsessed with building these devices and with technological solutions for disability, and had applied for funding several times to various local and national agencies. The way he saw things, being dependent generates feelings of shame and leads to self-segregation; technology ought to lead to independent living. He actually showed me the document that demonstrated Lenín Moreno had granted him a project, but that he had never gotten the money. “This is a great example of why people don’t believe in the

Correa government – things never change,” he said. Teofilo had even conducted an

266 informal census of the disabled population in Cuenca in hopes of starting a business dedicated to rehabilitation technologies, but quit based on lack of demand.

The gist of the matter for Teofilo dealt with having money. Upper class

Ecuadorians either sequester their family members or pay for equipment from developed countries. In his experience, these people have virtually no interest in helping other disabled people. He suggested that most middle class people become disabled as a result of accidents. In the lower classes, he blamed disability on preventable causes like alcohol dependence, lack of healthcare, and the like. This was the saddest for him, and these were some of the people that he thought could use the most help with adaptive devices. “A little goes a long way,” Teofilo said, “and so I used to fix small things like canes that simply needed a screw or something.” For Teofilo, the way to solve challenges faced by people with disabilities was through technological solutions. At the end of our conversation, Teofilo grabbed me and asked if I thought that it was crazy that Vice

President Moreno uses a manual wheelchair. When I gave him a quizzical look to elicit his feelings on the matter, Teofilo told me that he could not understand why someone of his stature would not use a high-functioning, expensive automatic wheelchair. This statement as much as any other indicated to me that he had not spent enough time with actual wheelchair users to understand the extent to which self-perception and identity is tied into adaptive technology for people with disabilities. From my friendships with disabled people in the United States, I was aware that many people use crutches or manual wheelchairs for personal or ideological reasons. For many people, to accept that

267 one “needs” to use an electric chair can imply debility and capitulation. As such, electric scooters and wheelchairs are seen by some as a last resort or only for emergencies.

In addition to family strategies, management of disability also occurs through cooperative partnerships between (non-kin) friends or helpers. Unlike Teofilo’s engineering approach, such strategies are predicated on intimate human relationships.

Such relationships can be comprised of two disabled individuals, but more often only one of the partners has a disability. As in the Mexican village studied by Gwaltney (1970), people with impairments often team up with others based on mutually beneficial relationships. Several times in Cuenca I observed examples of what Gwaltney’s termed

“transgenerational partnerships,” comprised of a dyad including a child guide and a blind individual. However, I gained more in-depth knowledge of working partnerships at community organizations in Cuenca between people with different types of impairments.

One example of a mutually beneficial partnership occurred between two SPD members, Estuardo and Carlos. As I have described previously, Estuardo had a severe mobility impairment making it difficult for him to get around easily. As president of

SPD, he needed help with running the office. Carlos, who had a mild developmental disability, offered an excellent partner since he was energetic and dutiful. Carlos almost always wore a black puffy jacket, with tennis shoes, baggy jeans, and his hat pointed at an odd angle; compared to neatly dressed Cuencanos, he always appeared a little disheveled. Although working as a volunteer, Carlos showed up daily in a support role at

SPD that included serving food, lifting heavy objects, running errands, and cleaning as necessary. This relationship benefits Estuardo, but it also allows Carlos to feel that he has

268 a purpose. When I asked him if he could imagine his life without being part of SPD, he talked about how he feels as if he’s treated like an equal. Without SPD, he said he would be “lost,” and that other people (i.e. non-disabled) have almost always made fun of him.

The dyad he shared with Estuardo offered him socially meaningful relationships and a job (albeit unpaid) that he would not otherwise be able to secure.

I have documented how disability is primarily managed collectively by families and cooperative partnerships. Adaptive technologies play a key role in making life easier for people living with impairment, but they are often affordable versions that complement personal assistance. The larger importance of collective strategies for managing disability is that the expectations and sites of authority are tied into the goals of the household or partnership, not based solely on individual technologies of the self. Moving beyond the household level of social organization, how does rehabilitation manifest with community- based organizations in Cuenca?

Acceptance and Independence in community-based rehabilitation

To the limited extent that rehabilitation has been promoted by the Ecuadorian state, it has been accomplished through a federated model that links resources and programming to regional offices of CONADIS. Chapter 6 discussed how the Correa administration has addressed the need for rehabilitation services largely through the dissemination of technical aids (e.g. wheelchairs, Braille readers, canes, etc.). In 2007, the administration called for a system of “integrated rehabilitation” through the Ecuador sin Barreras campaign. For disabled Cuencanos, the campaign was seen as mostly

269 symbolic. Rehabilitation services remain rare and expensive for most disabled

Ecuadorians. Counseling, speech therapy, and other professional services have been rarely available for the majority of disabled Cuencanos.

Rehabilitation makes up a minor aspect of the mission at the two community organizations I studied in Cuenca. In Rose’s terms, the ESB campaign problematized disability in such a way as to point to technologies such as rehabilitation equipment as the solution. These community organizations strategically offer rehabilitation programs in part as a guise for other more desirable activities like social gatherings, business planning, and knowledge sharing. Rehabilitation is a project that can be funded by outside entities, whereas many of the ongoing advocacy or training activities do not fall into categories preferred by local, national, or international funders. Though

“rehabilitation” goes on, these two organizations expend more effort at improving self- esteem, promoting disability awareness, and encouraging healthy lifestyles than on rehabilitation as it is defined by the state. The organizations have placated municipal and federal funders by presenting evidence that they offer rehabilitation services in order to pursue other organizational objectives such as microenterprises or social programming.

But the actual members of these organizations by and large do not see themselves as fundamentally deficient, and so have little incentive to engage in intensive rehabilitation programs. Their interest lies in learning to cope with their impairment through long-term rehabituation and overall well-being rather than restoring physical function.

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Resisting Regimes of Accountability at SPD

SPD’s attempt to offer rehabilitation services illustrates the difficulty in sustaining participation from its members. The organization has offered its own rehabilitation services since its inception. One of SPD’s two main buildings is a gymnasium where physical therapy is offered. Although SPD members can use the facilities on their own, they usually work with volunteer physical therapists. In 2008, the physical therapist,

Diego, sought to formalize the rehabilitation program at SPD. The organization received a grant of $USD 7,000 from the Ministry of Social Inclusion to upgrade their equipment.

The grant paid for items such as a stationary bike, couches, ultrasound, a muscular extension machine, and a treadmill. The most unusual piece of equipment, which elicited somewhat confused reactions at the monthly asamblea, was an “ion cleanser,” which is

“applied to therapies for detoxification and helps balance and reenergize as a result of the elimination of toxic organs and cellular metabolism,” according to the newspaper reporter who interviewed Diego and SPD staff (El Tiempo, 8 August 2008). Eugenia, as a proponent of natural remedies, enthusiastically backed the ion cleanser.

Diego and SPD staff endeavored to generate accountability on the behalf of SPD members. Rather than offer the sessions for free, they tried to mandate a one dollar fee for each therapy session to make the services more financially sustainable. Moreover, they tried to implement a computerized system for tracking therapy sessions. Diego wanted to use the computer system to monitor progress over time with individuals and demonstrate the value of therapy services. The tracking system was also apparently stipulated by the grant to demonstrate how the new equipment would be used. After a few

271 months of trying to implement the system, there was a low level of participation. SPD leaders complained that the members did not seem overly concerned with tracking their progress or showing up for therapy sessions on a regular basis.

From observing and speaking with SPD members, it was clear that physical therapy represented a sensitive topic. Many believed that therapy was useful and were generally supportive of SPD’s efforts, but also had ambivalent feelings about doing rehabilitation themselves. One person suggested that Diego was being coercive, but then quickly added that maybe they need coercion! Diego clearly believed that disabled people need rehabilitation to improve their lives, as he told me that “the most important thing is that people do not need help to get around and can live independently.” The ideology of rehabilitation clearly conflicts with another notion that SPD has worked hard to inculcate: that people with disabilities are “fine” just the way that they are. The conflict between accepting oneself and trying to improve one’s physical abilities makes systematic participation in rehabilitation problematic.

Rehabituation among Novidentes

The tension between self-improvement in terms of health and the ethos of acceptance likewise was present among blind and visually impaired members, or novidentes, who are part of ANA. Their narratives suggest that the radical shift that ensues when someone loses their vision not only greatly impacts life objectives, use of technology, and issues of personal safety. Vision loss usually guarantees a long process of rehabituation as people are forced to make sense of a new perceptual world. In

272 addition, other changes such as reduced mobility and a shift in autonomy alter the way that people think about themselves as adult subjects. As I discussed in Chapter 5, spatial barriers such as lack of crosswalks, deficient pathways, and inaccessible environments severely affect mobility. For individuals who have been born without or have gradually lost their vision, there is not such an apparent disjuncture, but both groups end up sharing a perceptual world that sets them apart from all sighted people (Asch and Sacks 1983;

Machalko 1999). Any visitor, sighted or blind, can perceive this perceptual world as they walk into the compound at ANA. Each time I entered, I shifted into a mode of being based on sound rather than sight, with a slower pace, and that is more sensitive to spatial relationship between objects and people.

When I asked about vision loss, many members of ANA described to me the multitude of skills that they have had to learn. For people with acquired impairments, these techniques had to be learned after losing their sight. People with congenital conditions also range from those who have lost their sight gradually to those who were born without sight. Living with a visual impairment requires an extensive set of skills and technologies. Four of the most common technical aids that people at ANA take advantage of are reading and writing with Braille, using an abacus for arithmetic, using a cane to assist with mobility, and employing screen-reading software to be able to listen to digital text. ANA members also use the auditory capabilities built into commonly used devices such as cellular phones, alarm clocks, and computers. With limited ability to see, they more rely more heavily on their sense of hearing and touch.

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The necessity of learning new adaptive skills depends on several factors including personal interest, daily needs, convenience, potential stigma, and the severity of impairment. For example, many people are able to get by in their daily lives without the use of walking canes. The use of canes, Braille, and abacus can make people with visual impairments more conspicuous in social situations; more times than not, ANA members try to avoid increased attention to themselves. Additionally, the utility of technologies like Braille depend on widespread availability in the built environment, but in Cuenca few sites have signs written in Braille. Instead, ANA members learn Braille to be able to read brochures, books, or political information available at ANA’s library.

People who are born with their impairments or who acquired them at a young age often learned how to read Braille or use an abacus in special schools for the blind. As I learned from speaking with a twenty-two-year-old named Guillermo, learning these corporeal techniques can be quite difficult for those adults more than for young people.

Five years prior to our interview, Guillermo lost his vision when the ammunition from an accidental shot damaged the optic nerve of his left eye and the cornea of his right eye.

Since Ecuador lacked properly trained surgeons, a Colombian doctor traveled to

Guayaquil to operate. Although his vision improved temporarily, his eyes later became infected. Guillermo explained that all he can see now is daylight. Under such circumstances, Guillermo has struggled to learn Braille – he said that there are too few people to learn from at ANA. He relies on friends as guides to walk through streets, but was slowly beginning to learn how to use a cane. His rehabilitation process – lasting five years with interruptions and changes in sight – is a common situation for ANA members.

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The process of adjusting to life with a visual impairment is measured not in months but in years or even decades.

I had a few conversations with people about the pros and cons of being born as a novidente. Was it better to have once been able to see, or to have always been blind?

These debates often took a phenomenological tone that privileged the way of being-in- the-world as it was experienced by the individual. For instance, many people who were born with their impairments claimed that not seeing was an advantage because they shared a somewhat secret world that only they had privilege to. This world, which was paradoxically right in front of sighted people but yet unperceived, created a collective landscape unique to novidentes. The cadre of people who had lost their vision tended to lament the lack of sight. Many of them hope for medical procedures or technologies that will help them see (again or for the first time). A few of these people suggested to me that having understood what sunlight, colors, and architectural form looks like helps them greatly since they have some sense in their minds about how the world appears.

The best example of the narrative of acceptance was offered by Paula, a blind mother of two sons who was twenty-six years of age when I met her. When I met Paula in the ANA library, we had an awkward start: as we gingerly attempted to offer each other the customary kiss on the right cheek, we missed. Immediately, Paula showed herself to be a joker as she laughed off the incident, and then asked if this interview was going to be like (Catholic) ”confession.” “If it is,” she giggled, “then you had better watch out – people who can’t see have amazing other senses.” Her witty comments made it clear that she still had the upper hand in our conversation. Paula was also divorced, had

275 graduated from high school, was studying reflexology, and had one family member who lives in the United States.

Paula described her relationship to being able to see in a rather unique way that emphasized the trope of acceptance. She felt content with her disability and would not want to change anything. Paula intimated that even “if in the future there is a scientific advance and that you can operate and as a result I would be able to see again, I would say

‘No, because now I am scared to see’.” Although she was born sighted, she lost her sight due to an accident and the inability of doctors to correct the injury. The accident occurred when she was six, and by age eight, she was nearly blind. She explained why she was happy as a novidente in more detail:

What I mean is that I have accepted my disability, but for some of my other friends it is not so. They would prefer to see and all of that, but I feel content. I’m not bitter at life at all. I can’t say that because I’m blind that I can’t see. If I see something that I cannot do, I go and ask my neighbor, ‘Listen, please can you help me?’ I don’t think that they are going to tell me No, and what do I need help with? When there is a gas tank, an electrical failure, or something with the water pipes, something that maybe I can’t do, well that’s how all of my days go but there’s no problem – I like a calm, easy life. And I am completely blind [soy total], but you know I can watch my little ones, I take care of them, I see them – I don’t know – it hasn’t made my life difficult or made me bitter. I’m not going to cross my arms and say that I can’t see, that I can’t watch my son, that I can’t do anything.. no, never. Yes, in my case that’s how it is, but I think that I might be a little bit unusual.

Paula’s account of her acceptance of living with visual impairment suggests that she feels more content than many of her peers with her life. Her reference to those who are “bitter” about their circumstances offers a subtle criticism of other disabled people who have not

“accepted” their impairments. Paula manages her household through extensive help from family and neighbors, and is thus capable of doing what she wants for the most part.

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I found that novidentes tend to fall into two broad categories: those who primarily interact with their families or groups like ANA, and those who frequently interact or work in sites that are predominantly comprised of sighted people. Fernando, who manages the local CONADIS office, represents the extreme case in that he is blind but manages sighted employees (see chapter 2). To accomplish this task, he has developed techniques for interacting with staff members. For instance, correspondence that arrives at CONADIS office must be read aloud by sighted employees for Fernando. Fernando’s case further demonstrates that techniques of managing disabilities do not always inhere in a single individual, but also can include skills or techniques learned within networks of people such as co-workers.

Programs intended to assist with rehabituation as practiced at community-based organizations in Cuenca aim at providing people with the minimum amount of assistance necessary to get by in their daily lives. Similar to the way that disability is cooperatively managed by households, members of these community organizations tend to reinforce the idea that disability ought to be accepted as part of one’s life and are geared less toward self-improvement.

Athletics as Rehabituation: “The Chair is Our Feet”

Returning to the example I began with, we can consider how Enrique’s unique strategies for social and economic survival make sense in the context of the “regimes of the person” that exist in Cuenca. As I have shown, the experience of having a disability is

Cuenca depends greatly on social networks, is managed collectively across households,

277 and accrues meaning through the way that impairments are strategically presented. In this final section, I examine the role of physical sports as an alternative to biomedical rehabilitation techniques by discussing the narratives of some of Enrique’s fellow wheelchair basketball players. Sports as rehabilitation offers an example that differs from sites of disability identity that arise in individual, household, and community organizations in that it is a collective experience based entirely on teamwork, bodily performance, and has a wider public profile in Cuenca.

Manderson discusses theories of rehabituation in the context of cyborg bodies.

Disability theorists have similarly begun to posit connections between the notion of cyborgs as “fabricated hybrids of machine and organism” (Haraway 1991: 50) and disabled bodies (Meekosha 1999; Campbell 2009: 35).57 I suggest that these athletes have adapted to a new sense of normality in part by learning new ways of their bodies through a combination of adaptive technology and corporeal retraining in a manner that points to a cyborg form of subjectivity. As Kuppers (2000) suggests wheelchair users represent a

“corporealization of the cyborg” by way of a non-traditional embodiment.58

As one of the bulkiest forms of adapted technology, wheelchairs are usually not conceived of as prostheses but rather as tools or aids. However, I suggest that the

57 “We are witnessing a new kind of human subjectivity – inter-subjectivity if you like – technological humans – hybrids, cyborgs, or monsters. What better place to extend our ideas about ableism and the production of disability than the subject of trans-humanism with all its incumbent issues around ontology, humanness, and of course, the place of technology” (Campbell 2009: 35). 58 Garland-Thomson (2002: 9) cautions that in recent scholarship, the transgressive aspect of monsters, cyborgs and other figures can involve “erasing real disabled bodies” from lived experiences.

278 phenomenology of wheelchair sports demonstrates how intertwined individuals with mobility impairments become with their wheelchairs. I show this in the following narratives about playing basketball in wheelchairs, but also by returning to the central puzzle offered at the beginning of this chapter: how do social expectations about disability influence Enrique’s choice between his skateboard and his wheelchair?

For many disabled athletes, learning to play sports in a wheelchair represents the culmination of years of training and rehabilitation. Although a few athletes I met had congenital disabilities, the majority had suffered some type of accident and had subsequently learned to use a wheelchair.

Figure 21. Dancing at SPD party

The arduous process of rehabituation necessary to learn how to locomote with a wheelchair provided a foundation of motor and social skills necessary to live an independent life as a disabled adult in Cuenca (the image in Figure 21 shows wheelchairs

279 users dancing). A recently injured person would lack skills that most of these athletes had made into unconscious habits over a period of years.

By playing basketball and eventually interviewing several players, I gained a better appreciation for the way in which wheelchair users have created accessible space for themselves in Cuenca. I came to realize these athletes are leaders within the disabled community; and in fact, they tend to set themselves apart from non-athletes. In many ways, they act as elites within the disabled community in Cuenca. Conversations with these wheelchair athletes covered a wide range of topics that began with sports but included disability rights, accessibility, migration, and even the normally taboo topic of sexual relations for people with disabilities (Earle 1999; Shuttleworth 2001).

Figure 22. Wheelchair basketball practice

About half the players have been part of the team that represents the Azuay province in national competitions. I heard about the history of the group from Norberto, a long-time participant. He explained that the team started up several years earlier when

280 some players from Guayaquil held an exhibition match. Led by a wealthy entrepreneur and wheelchair user named Ricardo Torres, a few individuals began playing at SPD and at other locations in Cuenca. Over time, Ricardo bought several competition-grade wheelchairs from the United States mainly so that he would have people to play with, as

Norberto said half-jokingly. When I observed the players in 2008, they had a well- established schedule of practices that took place on a weekly basis.

Each player on the team has his own particular needs. Often, there is at least one non-disabled person present to assist with small tasks that are more difficult with a wheelchair. These include activities like moving a large board in place over steps so that players can enter, occasionally helping people back into their chairs when they fall, and turning on and off lights that are out of reach for a wheelchair user (designed for a standing adult). Most of the people with more severe impairments are assisted by others who have less difficulty using their chairs. Like any sport, there is a wide range of skills, abilities, and ages within the members of the team.

For many who participate in wheelchair basketball, playing sports with their teammates represents the best form of therapy and rehabilitation. Norberto explained that there were physical, psychological, and social benefits. Playing basketball expands the range of activities available to wheelchair users. Physically, he noticed that his strength, fitness, and range of motion had improved considerably since playing sports, and he also experienced increased self-confidence. Even more important has been the social connection: Norberto described how all of the team members constantly goaded each other into playing each week, and that they have become his closest buddies.

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The narratives of rehabilitation I heard from these athletes suggest a phenomenon even more profound than the effects listed above. The notion that wheelchair basketball players might be best analyzed as disabled cyborgs occurred to me after speaking with

Francisco, who I described in chapter 3. After being injured in a mining accident,

Francisco has been using a wheelchair for several years and is now one of the best players on the team. While we shared a large bottle of Pilsener beer, Francisco discussed how one’s life is transformed once you have an accident. “The wheelchair is our life now,” Francisco explained, and “the chair is our feet.” His experience of being in the world was mediated solely through his wheelchair, which represented a drastic change from his prior life. From his perspective, most non-disabled people fail to appreciate the day-to-day experience that people with disabilities face as they are forced to adjust to life after an injury. He realized that his life would be much better once he accepted the way he was dependent on his wheelchair in all aspects of his life.

The narrative of Francisco and his peers indicate that disabled athletes do not transcend their impairment, but rather revalue their bodies in different ways. Using a wheelchair demands a new form of embodiment that exists at the intersection of identity and physical impairment. In other words, most of these individuals have been successful when they rehabituate, which is to say to abandon their prior modes of bodily practices and thinking as people capable of walking, and start to think of their wheelchairs as being a form of prosthesis. Francisco indicating that the “chair is now his feet” presents an example of a cyborg body (Manderson 2011: 60).

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To think about a slightly more complex case, I return to Enrique, whose situation differs from many of his fellow wheelchair basketball players for a number of reasons.

One key difference is that Enrique was born with his disability, and thus did not have the need for rehabilitation from an accident like the others. He has grown up with his disability and learned from a young age how to navigate through life with a highly visible impairment.

Enrique’s social status also distinguishes him from his peers. He has never been able to procure steady work, and thus has begged on the street for most of his adult life.

Enrique’s roots in the coastal province of Esmeraldas and his African heritage differentiates him from the other players, who are all from the southern, highland regions of Ecuador and would likely identify as mestizo. He embodies three marginalized subject positions in Ecuador: disabled, Afro-Ecuadorian, and poor. Given that context, the switch he makes between skateboard and wheelchair, or between beggar and athlete has to be disentangled. Even though he is a cherished member of the wheelchair basketball team,

Enrique adopts a different presentation of self in the street that helps him make a living in the competitive informal system of street begging in Cuenca. His shiny blue wheelchair aimed at high performance on the basketball court would likely make him seem less needy in the street. Enrique’s presents an intriguing case of how varying presentations of self can be assembled from different fusions of body and technology. The different aspects of marginality Enrique embodies – that is to say, Afro-Ecuadorian, disabled, poor

– shape the way that he uses technologies like his skateboard and wheelchair.

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Conclusions

In this chapter, I have shown that having a disability involves intensive management of one’s body across time. People who acquire disabilities often need to retrain their bodies to do different actions. In Cuenca, disabilities are managed socially, most often across the household but also through mutually-beneficial partnerships.

Acquiring a disability can also create ruptures within families and social networks that produce radically different circumstances and altered interpersonal relationships. In everyday life, people with disabilities present themselves in ways that vary depending on context and affect their role with families and other social groups.

The proposition that impairments are managed by individuals and social groups over time reinforces the notion that disability is socially constructed. The disability identity is performed through repeated acts that depend on how bodily differences manifest themselves in particular social environments. Within the broader tension between technologies of the person in Ecuador and the biosocial management of impairment, this chapter focuses on how the body can be trained and retrained as necessary to adapt to changing environments.

Manderson’s concept of rehabituation offers a broader method for making sense of the profundity of retraining that bodily disruptions imply than the medically-oriented idea of rehabilitation. In the concluding chapter, I bring together the idea of managing impairment with other factors that influence the social meanings of disability from prior chapters. These factors include the economic drivers of disablement, the regulation of conduct through biosocial relationships and biopolitical institutions, and spatial forms of

284 exclusion. I draw on each of these perspectives on disability into wider theories of embodiment and bodily difference in anthropology.

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CHAPTER 8 – CONCLUSIONS

“Nothing about us, without us” [political motto of disability rights activists] --- Charlton (1998)

“A very important change is that people with disabilities have taken a leading role, not to be lead but to lead themselves. We want to be free to take control over our own lives and also to make these changes sustainable over time, not just dependent on one president or another.” -- Ximena, 40

In the center of Quito’s historic downtown, a group of disability organizations came together in December 2008 to celebrate the International Day for Persons with

Disabilities. This disability awareness rally was held in La Plaza de la Independencia, popularly known as La Plaza Grande (see Figure 23). The event consisted of musical performances, inspirational speeches, athletic and dancing demonstrations, and political orations. One speaker in particular emphasized the importance of Quiteños accepting the right to una vida incluyente, or a life with inclusion. People assisting with “simulations of impairment” labored in the hot sun: bystanders could walk around with a cane or use a wheelchair to ostensibly “understand” what a mobility impairment might be like by pretending to be disabled for twenty minutes.

The rally coincided with the annual “Las Fiestas de Quito” celebrating the founding of Ecuador’s capital city. Shouts of ¡Viva Quito! (long live Quito) were interspersed throughout in attempt to play off of the patriotic enthusiasm of the festival.

About halfway through the rally, the crowd’s attention was drawn to the roof of

Carondelet (the presidential palace) as President Correa made a surprise visit and waved down to the crowd as shown in Figure 24.

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Figure 23. Rally for disability rights in La Plaza Grande

Figure 24. President Correa waves to disability rights rally participants

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Correa’s appearance in support of the disability rights rally symbolized his commitment to addressing the political concerns of disabled Ecuadorians. While I argue in this dissertation that such strategies are also part of a highly strategic set of maneuvers to consolidate political power, having the president and vice president so involved in disability politics has brought attention to issues relevant to disabled communities throughout Ecuador. These actions have opened up spaces to discuss the marginality of disabled Ecuadorians and their families in ways that were difficult to image just decades ago. Perhaps the most important aspects of the rallies such as this relates back to Wolf’s argument about hidden histories: the notion that disabled people have begun to see themselves as historical actors that matter. Both in Cuenca and throughout Ecuador, new perspectives that emphasize how disabled people should have authority over their own lives have begun to circulate.

Highlights of Key Findings and Contributions

In order to understand how the category of discapacidad has emerged through historical, political, and cultural processes, I conducted ethnographic research with disabled people, their allies, and family members. I have focused on three social processes in contemporary Ecuador: how disability is produced, embodied, and governed.

Taken together, these social processes help explain how disability subjectivities are socially and culturally constructed through complex interactions between the state,

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navigating spatial terrains, and the way that meanings of impairment emerge in the context of social networks.

In contrast to popular accounts or medical discourses that frame disability as a loss, anomaly, or tragedy, scholars have increasingly sought to examine how the meanings of disability are based on cultural context, social relations, and particular knowledge systems. In considering disablement as a socio-cultural process shaped by political, economic, and historical forces, this research engages in theoretical debates around embodiment, space, and citizenship. The findings suggest that common constructions of citizenship often falsely assume that subjects have “normal,” mobile bodies. Examining spatial exclusion for disabled communities opens up new discussions about how marginality arises in part from privileging particular forms of bodily differences, as well as how constructions of normal bodies can shift over time.

The struggle of disabled Ecuadorians for meaningful forms of cultural citizenship

– that is, equal access to education, employment, and urban space – reveals cultural and historical legacies of stigma and exclusion toward people with bodily differences. As the state becomes more active in managing disability at the population level, disability has become a form of social difference that is simultaneously produced, remedied, and reinforced by the state. I argue that community organizations have attempted to reshape medical models of disability and cultural expectations around citizenship through grassroots advocacy. I further suggest that disability is at once a new form of collective

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identity, an emergent category of state governance, and increasingly a site of profit for health care and rehabilitation industries.

This dissertation contributes to the expanding scholarship on social and cultural dimensions of disablement outside of the Global North. Partially in response to the paucity of research that existed prior to the 1990s, anthropologists and others in the human sciences interested in studying disability have made significant contributions – especially in medical anthropology (Inhorn 2004). I view my work as contributing to interdisciplinary scholarship that views disability as a historically contingent category of bodily and behavioral difference. I show disability is fundamentally a social process mediated by the enactment of embodied differences, collective identity, economic marginalization, and state governance. Chapters 3 and 4 demonstrate how structural violence and social forms of suffering relate to the management of stigmatized bodies.

While impairment and bodily difference have always been an aspect of human society, we can only understand the notion of discapacidad in relation to specific configurations of medical knowledge and technology, cultural meanings about the body, and systems of public welfare. Thus, I focus on forces like structural violence that produce disablement, and suggest the uneven effects of poor health care, worker protection, and the consequences of economic modernization draw attention away from medicalized perspectives on disability that imply static, naturalized understandings of disability.

Instead, it shifts the discussion toward how particular chronic illnesses, injuries, and disabilities can be prevented.

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I have also tried to balance my analysis of the marginalization of disabled

Ecuadorians with a focus on the range of subjectivities that have emerged in recent decades. I challenge the idea that disabled people are irrevocably marginalized through showing how citizenship is partial, uneven, and structured by significant local hierarchies. Narratives of a range of disabled individuals --- such as wheelchair basketball players, novidentes, and people whose impairment may be difficult to categorize – show how disability identities are mediated by other important social factors.

I also suggest that while political advocacy around disability shares some commonalities with other forms of social difference, the particular cultural legacies around exclusion and shame make entitlement claims problematic in the context of “pluricultural politics” and post-neoliberal restructuring that has taken place in Ecuador in the 21st century.

Throughout my research, I found that the “little matters,” such as architectural barriers, inaccessible transportation systems, lack of Braille, and other impediments in the built environment play a critical role in sustaining the marginalization of people with physical and visual disabilities. The notion of “embodied space” highlights the interactions between bodies with varied types of capabilities and the way that homes, buildings, vehicles, and many other features of built human environments are constructed. A sharp focus on the way that urban spaces privilege unmarked subjects within racialized and gendered social hierarchies also opens room for discussion about how such environments can be restructured or adapted in ways that make them simultaneously more inclusive and exclusionary. At the same time, a focus on spatial

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relations can show how any changes in design or conventions such as making spaces

“accessible” have differential effects across multiple marginalities (Star 1991). Embodied notions of space denaturalize the idea that the environment is neutral or unchangeable. I show how underlying economic disincentives to constructing accessible buildings and transit systems help explain why businesses and governments resist the demands of disability advocates in Cuenca. Thus, many questions that appear to be about accessibility also deal with core questions of political economy.

While I agree with the view that biological forms of citizenship take on different meanings within local conditions of poor health and limited social capital in the Global

South, I nevertheless document the emergence of networks of fragmented biosocialities among communities of disabled people in Ecuador. Whether through athletic teams or in aiding processes of rehabituation, I found networks of people organizing around their collective experiences of bodily impairments. The biological or medical basis for these networks was not always primary but enables the sharing of health knowledge, pooling of financial resources, and the establishment of social ties; such ties are crucial in the highly stratified environment that still has relevance in contemporary Cuenca.

Remaining Issues and Future Areas of Research

I felt fortunate to have conducted my research during a period when disability rights were making headlines in Ecuador. A new constitution, the implementation of the

Ecuador sin Barreras campaign, and the UN Conventions of the Rights of Persons with

Disabilities all offered a compelling backdrop of international and national issues for

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understanding the contemporary experiences of disabled people in southern Ecuador. I believe that placing my analysis within this broader context will ultimately help historicize my research more effectively. At the same time, I had the sense that the consequences of these broader campaigns may take years or decades to work out. With some measure of hindsight, it is possible to see potential areas for future research.

One of the most challenging aspects of making sense of disability in Cuenca has been to explain the variety of ideologies and models that appear to stipulate different ways of managing and enacting disabled subjectivities. Drawing on technologies of the self and governmentality offers an analytical framework, but further research is required to sort out competing visions of how disabled people should care for themselves, such as those promoted by the state, the church, and community organizations. Especially important is the bind that results when publicly acknowledging a stigmatizing identity is a necessary requirement for making entitlement claims, asserting the rights to the city, and forging connections with people who share a collective experience of impairment.

For many people, fear about the potential consequences of vergüenza – both personally and for their family – prevent them from claiming disability identity.

A second important area for future research entails spatial patterns such a medical tourism and the effects of transnational migration. In addition to the micro-geographies of exclusion explored in chapter 5, I think that a remaining challenge is to examine how the difficulty of living with embodied differences plays into the overall household strategy under highly challenging economic conditions in an area with a high rate of out-

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migration. The most typical pattern that I came across involved rural to urban migration, but an inability to permanently migrate to the most common destinations of people from

Azuay: Spain and the United States. Apart from medical visits to other Latin American countries with low-cost public healthcare, most disabled family members appear to be left behind by migrating family members. Remittances often help make up higher cost of having a disabled or aging family member.

Perhaps the broadest question remains from my preliminary fieldwork: are we witnessing the emergence of a wider social movement around disability rights in Latin

America? Many of the ingredients appear to be in place, but my research also suggests that some serious challenges to cross-impairment solidary exist. The lived experiences of novidentes diverge significantly from that of people with physical impairment to a degree that makes finding common ground difficult. In addition, competition for scarce public and private resources often pits these groups against one another. As in other parts of the world, the claim posed by Charlton that opened this chapter – “nothing about us without us” – begs the question of which “us” is the referent. Considering disability as a dynamic form of difference that varies across space and time can challenge anthropologists and others to rethink the limits to the malleability of human bodies.

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APPENDIX A. KEY PEOPLE AND ORGANIZATIONS

People

Enrique is an Afro-Ecuadorian man in his late thirties originally from the province of

Esmeraldas. Born with shortened legs and no feet, he gets around by pushing a skateboard with heavy black gloves. Enrique is a national caliber paralympic swimmer and basketball player.

Estuardo served as SPD president in 2008-2009. He walked with a double set of canes as a result of an electrical accident sustained when he was in his twenties.

Joaquín had both of his hands amputated after an industrial accident with the electric company. He followed Estuardo as SPD president.

Eugenia is a charismatic member of SPD who identifies as a person with a mobility impairment due to chronic pain in her spinal column

Pablo grew up in the southern city of Loja several years ago. Severely isolated as a young child, he had a more active social and professional life after moving to Cuenca.

Francisco had been playing wheelchair basketball for several years after moving to

Cuenca. He injured his back during a mining incident in the Del Oro province.

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Ximena is a member of ANA with low vision who uses a cane to get around. She has three sons and has worked a variety of jobs including fast food worker and street vendor.

Organizations

Society of People with Disabilities (SPD) is the fictional name of a nonprofit, non- governmental organization offers services and promotes disability rights in the province of Azuay. SPD has roughly sixty active members from an overall pool of 450. Although the majority of the SPD members have some type of physical disability, it also includes individuals with auditory, intellectual, and visual disabilities and purports to serve disability community at-large.

Association of Novidentes of Azuay (ANA) serves individuals with visual impairments, partial sight, and those who identify as blind in the province of Azuay. The term novidentes refer to people who cannot see in some capacity and does not have an obvious translation in English. ANA was founded in 1965, and is comprised of approximately forty people that provide services, training, and advocacy for novidentes and their families.

CONADIS – Consejo Nacional de Discapacidades (National Council on Disability) is the agency responsible for coordinating policies and services pertaining to people with disabilities in Ecuador.

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APPENDIX B: DISABILITY IN ECUADOR’S 2008 CONSTITUTION

SECTION SIX Persons with disabilities59

Article 47. The State shall guarantee disability prevention policies and, along with society and the family, it shall ensure equal opportunities for persons with disabilities and their social integration.

It is recognized that persons with disabilities have the following rights:

1. Specialized attention in public and private entities that provide healthcare services for their specific needs, which shall include the free provision of medicine, especially for those persons that require lifetime treatment. 2. Comprehensive rehabilitation and permanent assistance, which shall include the corresponding technical aids. 3. Discounts for public services and for private transportation services and entertainment. 4. Tax exemptions. 5. Work in conditions of equal opportunity that foster their capabilities and potential by means of policies that permit their incorporation into public and private entities. 6. Adequate housing, with facilities for access and the conditions needed to address their disability and to achieve the highest possible degree of autonomy in their daily life. Persons with disabilities who cannot be cared for by their relatives during the day or who have no permanent place to live shall have welcoming centers for their shelter. 7. An education that develops their potential and skills for their integration and participation under conditions of equality. Their education in the regular education system shall be guaranteed. Regular establishments shall incorporate a differentiated treatment and those establishments for special care shall incorporate specialized education. Schools shall comply with standards of accessibility for persons with disabilities and shall implement a scholarship system that in line with the economic conditions of this group. 8. Specialized education for persons with intellectual disabilities and promoting their capabilities by the establishment of specific education centers and teaching programs.

59 An english version of Ecuador’s 2008 Constitution is available at http://pdba.georgetown.edu/Constitutions/Ecuador/english08.html as part of the Political Database of the Americas (2011); this appendix reflects minor corrections in translation.

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9. Free psychological care for persons with disabilities and their families, in particular in the case of intellectual disabilities. 10. Adequate access to all goods and services. Architectural barriers shall be eliminated. 11. Access to alternative communication mechanisms, media and forms, among which sign language for deaf persons, oralism and the Braille system.

Article 48. The State shall adopt for the benefit of persons with disabilities measures that ensure:

1. Social inclusion, by means of coordinated state and private plans and programs that promote their political, social, educational, and economic participation. 2. Obtaining tax credits and discounts or exemptions that enable them to start up and keep productive activities and obtaining study scholarships at all levels of education. 3. The development of programs and policies aimed at promoting their leisure and rest. 4. Political participation, which shall ensure that they are duly represented, in accordance with the law. 5. The establishment of specialized programs for the integral care of persons with severe and deep disabilities, in order to achieve the maximum development of their personality, the promotion of their autonomy and the reduction of their dependence. 6. Incentive and support for production projects for the benefit of the relatives of persons with severe disabilities. 7. Guaranteeing the full exercise of the rights of persons with disabilities. Abandonment of these persons is punishable by law and any action leading to any kind of abuse, inhuman and degrading treatment and discrimination because of their disability shall be punishable by law.

Article 49. The persons and families who provide care to persons with disabilities and who require permanent attention shall be covered by the Social Security and shall receive periodic training to improve the quality of care.

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