Civilizing Disability Society: The Convention on the Rights of Persons with Disabilities Socializing Grassroots Disabled Persons' Organizations in ... (Cambridge Disability Law and Policy Series) 1108427618, 9781108427616

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Cambridge University Press 978-1-108-42761-6 — Civilizing Disability Society Stephen J. Meyers Frontmatter More Information

civilizing disability society The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is increasingly used to civilize grassroots disabled persons’ organizations (DPOs) around the world. The international disability rights movement actively promotes the CRPD’s key norm that disabled persons mobilize in support of their rights under the Convention. The unintended consequence of these activities, however, is that local groups focused on social support and service provision, rather than disability-rights advocacy, are targeted for change. While the resources provided by international actors to grassroots organizations provide new opportunities, they also create barriers to local groups’ ability to promote full civic participation of their members in the local community. Through a detailed account of grassroots DPOs in Nicaragua, Civilizing Disability Society demonstrates how local organizations navigate pressures from abroad as they attempt to concretely address the health, education and economic needs of their members at home. stephen j. meyers is an Assistant Professor at the University of Washington with joint appointments in Law, Societies & Justice, International Studies and Disability Studies. He has close to two decades of experience working with grassroots disability associations in the Global South as a researcher, advocate and project implementer.

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CAMBRIDGE DISABILITY LAW AND POLICY SERIES

Edited by Peter Blanck and Robin Paul Malloy The Disability Law and Policy series examines these topics in interdisciplinary and comparative terms. The books in the series reflect the diversity of definitions, causes, and consequences of discrimination against persons with disabilities while illuminating fundamental themes that unite countries in their pursuit of human rights laws and policies to improve the social and economic status of persons with disabilities. The series contains historical, contemporary, and comparative scholarship crucial to identifying individual, organizational, cultural, attitudinal, and legal themes necessary for the advancement of disability law and policy. The book topics covered in the series also are reflective of the new moral and political commitment by countries throughout the world toward equal opportunity for persons with disabilities in such areas as employment, housing, transportation, rehabilitation, and individual human rights. The series will thus play a significant role in informing policy makers, researchers, and citizens of issues central to disability rights and disability antidiscrimination policies. The series grounds the future of disability law and policy as a vehicle for ensuring that those living with disabilities participate as equal citizens of the world. Books in the Series

Ruth Colker, When Is Separate Unequal? A Disability Perspective, 2009 Larry M. Logue and Peter Blanck, Race, Ethnicity, and Disability: Veterans and Benefits in Post–Civil War America, 2010 Lisa Vanhala, Making Rights a Reality? Disability Rights Activists and Legal Mobilization, 2011 Eilionóir Flynn, From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities, 2011 Isabel Karpin and Kristin Savell, Perfecting Pregnancy: Law, Disability, and the Future of Reproduction, 2012 Alicia Ouellette, Bioethics and Disability: Toward a Disability-Conscious Bioethics, 2013 Arie Rimmerman, Social Inclusion of People with Disabilities: National and International Perspectives, 2013 Andrew Power, Janet E. Lord and Allison S. DeFranco, Active Citizenship and Disability: Implementing the Personalisation of Support, 2013 Lisa Schur, Douglas Kruse and Peter Blanck, People with Disabilities: Sidelined or Mainstreamed?, 2013 Eliza Varney, Disability and Information Technology: A Comparative Study in Media Regulation, 2013 Jerome E. Bickenbach, Franziska Felder and Barbara Schmitz, Disability and the Good Human Life, 2014 Robin Paul Malloy, Land Use Law and Disability: Planning and Zoning for Accessible Communities, 2014

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Cambridge University Press 978-1-108-42761-6 — Civilizing Disability Society Stephen J. Meyers Frontmatter More Information

Arie Rimmerman, Family Policy and Disability, 2015 Peter Blanck, eQuality: The Struggle for Web Accessibility by Persons with Cognitive Disabilities, 2016 Anna Arstein-Kerslake, Restoring Voice to People with Cognitive Disabilities: Realizing the Right to Equal Recognition Before the Law, 2017 Arie Rimmerman, Disability and Community Living Policies, 2017 Paul Harpur, Discrimination, Copyright and Equality: Opening the e-Book for the PrintDisabled, 2017 Aisling de Paor, Genetics, Disability and the Law: Towards an EU Legal Framework, 2017 Piers Gooding, A New Era for Mental Health Law and Policy: Supported DecisionMaking and the UN Convention on the Rights of Persons with Disabilities, 2017 Larry M. Logue and Peter Blanck, Heavy Laden: Union Veterans, Psychological Illness, and Suicide, 2018 Karrie A. Shogren, Michael L. Wehmeyer, Jonathan Martinis and Peter Blanck, Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life, 2018 Gauthier de Beco, Janet E. Lord and Shivaun Quinlivan, The Right to Inclusive Education in International Human Rights Law, 2019

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Cambridge University Press 978-1-108-42761-6 — Civilizing Disability Society Stephen J. Meyers Frontmatter More Information

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Cambridge University Press 978-1-108-42761-6 — Civilizing Disability Society Stephen J. Meyers Frontmatter More Information

Civilizing Disability Society the convention on the rights of persons with disabilities socializing grassroots disabled persons organizations in nicaragua STEPHEN J. MEYERS University of Washington

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University Printing House, Cambridge cb2 8bs, United Kingdom One Liberty Plaza, 20th Floor, New York, ny 10006, USA 477 Williamstown Road, Port Melbourne, vic 3207, Australia 314–321, 3rd Floor, Plot 3, Splendor Forum, Jasola District Centre, New Delhi – 110025, India 79 Anson Road, #06–04/06, Singapore 079906 Cambridge University Press is part of the University of Cambridge. It furthers the University’s mission by disseminating knowledge in the pursuit of education, learning, and research at the highest international levels of excellence. www.cambridge.org Information on this title: www.cambridge.org/9781108427616 doi: 10.1017/9781108677783 © Stephen Meyers 2019 This publication is in copyright. Subject to statutory exception and to the provisions of relevant collective licensing agreements, no reproduction of any part may take place without the written permission of Cambridge University Press. First published 2019 Printed and bound in Great Britain by Clays Ltd, Elcograf S.p.A. A catalogue record for this publication is available from the British Library. Library of Congress Cataloging-in-Publication Data names: Meyers, Stephen J., 1976– author. title: Civilizing disability society : the Convention on the Rights of Persons with Disabilities socializing grassroots disabled persons organizations in Nicaragua / Stephen J. Meyers. description: Cambridge, United Kingdom : Cambridge University Press, 2019. | series: Cambridge disability law and policy series identifiers: lccn 2019014855 | isbn 9781108427616 (hardback) | isbn 9781108446433 (paperback) subjects: lcsh: People with disabilities–Legal status, laws. etc.–Nicaragua. | Civil society–Nicaragua. | Convention on the Rights of Persons with Disabilities and Optional Protocol (2007 March 30) | People with disabilities–Legal status, laws. etc. | Civil society. | BISAC: POLITICAL SCIENCE / Political Freedom & Security / Human Rights. classification: lcc kgg459 .m49 2019 | ddc 342.728508/7–dc23 LC record available at https://lccn.loc.gov/2019014855 isbn 978-1-108-42761-6 Hardback Cambridge University Press has no responsibility for the persistence or accuracy of URLs for external or third-party internet websites referred to in this publication and does not guarantee that any content on such websites is, or will remain, accurate or appropriate.

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Cambridge University Press 978-1-108-42761-6 — Civilizing Disability Society Stephen J. Meyers Frontmatter More Information

Contents

page ix

Acknowledgments 1

Spending Down a Grant

2

Inhabiting Nicaraguan Civil Society at the Intersection

28

3

The Problem with Pretty Little Programs

54

4

Grassroots Members Walking and Rolling Away

85

5

Identity Politics as the Continuation of War by Other Means

114

6

Innovation at the Crossroads

137

7

The CRPD’s Civilizing Mission

163

1

References Index

167 177

vii

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Acknowledgments

This book represents both an individual effort and a community product. I, as the author, am individually responsible for all its flaws. For its positive aspects, however, many others deserve far more credit than me. There is not a single page of this manuscript that does not reflect the lived experiences of persons with disabilities in Nicaragua. I only hope that I was able to represent accurately the stories, insights and needs of persons with disabilities in the same manner in which they so honestly shared them with me. I am also indebted to my colleagues at the University of California, San Diego and University of Washington in Seattle. Their thoughts and encouragement played a large part in both the inception and the completion of this book. The story behind the research for this book began more than seventeen years ago. I first visited Nicaragua as a young project coordinator for a small international nongovernmental organization specializing in prosthetic rehabilitation. During that time, I learned that the lives of persons with disabilities were far more complex than any international organization or donor was willing to admit. My organization’s activities were largely driven by international priorities. First, we focused on providing landmine-survivor assistance under the 1997 Convention on the Prohibition of the Use, Stockpiling, Production and Transfer of Anti-Personnel Mines and Their Destruction (aka Ottawa Landmine Treaty), and later we started to promote rights under the 2006 Convention on the Rights of Persons with Disabilities. In both cases, our activities were developed in response to international funders, global bestpractice norms and the latest development “fad” (i.e. microcredit) rather than to the persons with disabilities who we publicly held up as the center of our “community based” and “participatory” mission. Luckily, however, I was able to use that job to begin to meet, talk to and spend time with persons with disabilities “on the ground” in Nicaragua. These local interlocutors generously shared their time with me and were often willing to tell me things that I did not want to hear: that their new artificial limb was useless without a job, that they would rather work in a factory than ix

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Acknowledgments

be given a microloan to start a small business, that their deepest need was for companionship and community, that they could not care less about international laws and treaties, and a myriad other things that departed from those that I and others claimed was what they needed and wanted. I no longer work for an international non-governmental organization, but I see the story around the world as continuing to be much the same. Today, a full decade after the Disability Convention, international organizations are increasingly pulling local DPOs into their work. But, as much as this may sound like a good thing, it is putting these grassroots groups into the same position in which I found myself so many years ago: leaders of local DPOs are often pressured to respond more to international funders, best-practice norms and new fads than to the persons with disabilities whom they were chosen to lead. In “Segovia”, the pseudonym for my field site in Nicaragua, however, I was invited into the lives of these DPOs, where both their leaders and regular members shared with me their private gripes, life stories and time by inviting me to participate in their meetings, come into their homes and be a part of the larger community. I appreciate this openness and hospitality, not only because it made my field work possible, but because it put these DPOs at great risk. As a white, educated, non-disabled and internationally connected North American, I was extremely grateful that the persons with disabilities I spoke to were willing to critique international ideas and practices that emanated from people very similar to myself. They had every right to be suspicious of me, a so-called international expert getting a fancy degree coming from the Global North. I am grateful and undeserving of their incredible honesty with me. I also want to thank my dissertation committee at the University of California, San Diego (UCSD) and my new colleagues as faculty at the University of Washington in Seattle. Professor Amy Binder and Professor Gershon Shafir, my dissertation committee Chair and Co-chair, guided me through my dissertation with wisdom and, I believe, love (if not for me, at least for sociology). They also encouraged me to turn my dissertation into a book, which it now is, as proven by the fact that I am writing this page. I would also like to acknowledge Professor Kwai Ng for reminding me why I chose to pursue a PhD in sociology (i.e. for people, not for publications), Professor Nancy Postero for her questions about my approach to human rights and Professor Richard Feinberg for his interest in Nicaragua. I also want to thank my many friends at UCSD, who made my time there grinding away on a dissertation to be not only tolerable, but actually fun. The University of California and several other academic institutions also helped make it financially possible for me to do my research in Nicaragua. UCSD provided me a Research Travel Grant from the Institute for International, Comparative, and Area Studies; a Tinker Pre-Dissertation Research Travel Grant from the Center for Iberian and Latin American Studies; and a Dissertation Completion Grant from the Department of Sociology. In addition to UCSD, the University of California, Berkeley School of Law provided me with a Human Rights Fellowship, and the

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Acknowledgments

xi

George Washington University Center for International Business Education and Research gave me a Summer Doctoral Institute in Institutions and Development Fellowship. In addition, they gave me a new academic home as a jointly appointed Assistant Professor to the Law, Societies & Justice Department; Jackson School of International Studies; and Disability Studies Program (yes, I have to go to three different faculty meetings). Within these units, I received important feedback on early drafts of material through the Comparative Law & Social Studies (CLASS) Workshare, the Center for Latin American and Caribbean Studies Dangerous Subjects Workshop, and the Jackson School for International Studies Faculty Research Group Presentation. I also want to thank the University of Washington for taking a chance on me. They have no idea how lucky I feel to be at a place surrounded by people so much more intelligent, accomplished, and hardworking than me, yet they (somewhat unwisely) trust that I know what I am doing and continually encourage me to grow as a teacher, researcher and advocate.

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1 Spending Down a Grant

grant guidelines and guardrails It was November and the rain was pouring. The leaders of the seven grassroots disability organizations that made up the Comisión Departmental de incidencia y sensibilizacion de personas con discapacidad (CDIS) – the Departmental Commission for Advocacy and Awareness of Persons with Disabilities in Segovia1, Nicaragua – were sitting in a small meeting room. I was sitting with them, in the corner, ready to listen. The rain bouncing off the zinc roof above was so loud that we could not hear one another talk, so we sat together patiently, waiting for it to subside. I was glad everyone had made it; a few weeks earlier the river running through the center of town had flooded, filling the streets and cutting one half of the city off from the other. Hundreds were stranded in their homes for several days. Now a cleanup was taking place and dozens of neighborhood groups were sweeping streets and repairing damaged homes. Other organizations were collecting and loading up pickup trucks sent around by the Mayor’s Office with clothes, furniture, and other donations to replace what the households closest to the river had lost when the water had come pouring down over its banks. These sorts of voluntary collective actions to help one another were referred to as solidaridad (“solidarity”), the centerpiece of Nicaraguan civic culture and a celebrated practice of public participation. To work together to solve concrete problems was both a point of pride and a duty of citizenship. Several of the disability groups I was sitting with in that room had reached out to their members in the flood zone, making sure their families had everything they needed. 1

“Segovia” is a pseudonym. Nueva Segovia refers to a collection of several departments (or prefectures) in the northern, mountainous region of Nicaragua, which has several mid-sized cities, all with disability coalitions. This region of Nicaragua is politically important for having been a major battleground throughout the civil war (1979–1990) and for remaining a Sandinista Party stronghold through to the present day.

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Spending Down a Grant

Finally, that morning the skies cleared and the monthly meeting of CDIS began. There was only one major item on the agenda: the end of a multiyear grant the coalition had received from the US-based Disability Rights Fund (DRF) to underwrite the coalition’s advocacy activities in and around Segovia. CDIS was now five years old. It had been formed in 2008 through the initiative of Handicap International (HI), an international disability-rights NGO headquartered in France, just months after Nicaragua signed and ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The technical support that helped form CDIS was part of Handicap International’s global Making It Work campaign to make the UNCRPD “work” by mobilizing local Disabled Persons’ Organizations (DPO) to push their governments to implement the convention. The $200 left of DRF’s several-thousand-dollar grant shared the same goal as HI, of mobilizing DPOs for rights advocacy. DRF’s grant had covered a range of activities, including marches down the city’s streets, public-awareness radio ads on the disability-rights convention, banners making demands for greater inclusion hung in the central plaza, and workshops and training on political advocacy and the importance of civic engagement. However, the grant would not cover solidaridad activities, including those activities directly supporting persons with disabilities who had been hurt by the flood. Those sorts of collective actions, which were essential for ensuring that everyone in the community was able to survive, if not thrive, had to come from local people themselves. Luis, the president of the Association of the Blind and cochair of CDIS with Alfonso, the president of the Association of the Physically and Motorly Disabled (ADIFIM), explained that they needed to spend the $200 before the end of the year so they could give DRF a final report before reapplying for a new grant. Fatima, the president of the Organization of Women with Disabilities, spoke up, asking if they could just divide the money between the associations. She explained: “We have nothing. No paper, no cell phone, no money for taxis so we can meet.” I would soon find out how true this crisis was for the Organization of Women with Disabilities. When I attended their monthly meeting two days later, Fatima read aloud the group’s budget, which was in deficit a few dollars because there was nothing left, forcing her, a very poor woman, to pay for cell-phone minutes out of her own pocket just to call the other members to confirm the meeting’s time and place. The association supported itself through monthly membership dues of twenty cordoba, a little less than a dollar, yet still more than many members could pay. Fatima had to borrow money for the taxi ride to the community center where they met because, as a wheelchair-user, she could not otherwise get there on her own. Back at the CDIS meeting, a board member of the local Los Pipitos, officially the Association of Parents of Children with Disabilities, chimed in with her suggestion of what they could do with the DRF money. She wanted to use it to purchase leg braces for a girl in a poor family whom she had recently visited, but the DRF’s grants agreement did not permit this use. Finally, Vicente, president of the Organization of Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

Grant Guidelines and Guardrails

3

Disabled Revolutionaries, who had been sitting silently with his jungle hat pulled down low, made the point that they should have used the money earlier to build another ramp for one of the voting stations for the upcoming elections. His association of war-wounded Sandinista ex-combatants had spent the last year on a voting campaign that included building three ramps in three different voting precincts to ensure it was accessible for the presidential elections that they were sure would reelect Daniel Ortego, hero of the Sandinista Revolution and now, decades later, the current president. But Humberto, president of the Nicaraguan Association of the Disabled Resistance (a rival organization of ex-Contra soldiers who had launched a counterrevolution in the 1980s) – himself disabled in combat – explained that the money to pay for these ramps was the government’s (not the coalition’s) responsibility. It was the same for mobility devices and cell-phone minutes. Indeed, DRF’s funding guidelines explicitly stated that their grants were to be used to “strengthen local stakeholders who can hold governments accountable for fulfilling the rights of persons with disabilities.” The “stakeholders,” of course, were DPOs in local communities around the world, and “hold[ing] governments accountable” meant political advocacy. The $200 left from the DRF grant could only be used for disability-rights advocacy activities. Basically, the DPOs in the coalition, all membership-based groups of persons with disabilities or the parents of children with disabilities, could lobby the state to assist persons with disabilities, but could not use DRF’s support to directly help disabled people (or themselves as organizations), as three of the DPOs seemed to be suggesting. The needs and desires articulated by the representatives from the Organization of Women with Disabilities, Los Pipitos, and even the Organization of Disabled Revolutionaries, demonstrate the priorities of many grassroots associations in developing countries. They focus on directly addressing the concrete, immediate needs of their members and others, whether that is ensuring people can meet, receive rehabilitation, or access a building. Of course, from the point of view of international disability-rights organizations like DRF, advocacy is direct action. Indeed, the funding guidelines are justified according to the logic that “by supporting civil-society efforts at country level to ratify, implement, and monitor the UNCRPD, DRF seeks to make a more direct impact on improving the conditions of PWDs [persons with disabilities]” (DRF 2011). Pouring cement and giving out mobility aids, however, are just the sort of civic participation Nicaragua celebrates as solidaridad. Groups collecting and distributing their own resources to help their members, or sponsoring activities that benefit the wider community, are all seen as ways of building a better society and moving Nicaragua forward. This civic culture was established decades earlier during the Sandinista “Revolutionary Period” (1979–1990) of social democracy when young revolutionaries, churches, and hundreds of grassroots citizen groups mobilized for common cause to improve their society by pursuing various social goals. During that period, health and literacy “brigades” of university students, neighborhood Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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Spending Down a Grant

associations, and even Catholic study groups led by liberation theologians, came together in “solidarity” to provide thousands of vaccinations and significantly reduce the illiteracy rate, garnering Nicaragua the prestigious UNESCO Literacy Prize in 1980. In this way, Nicaragua achieved high and globally celebrated rates of social progress during a period when it was embroiled in a civil war, suffering under US-imposed economic sanctions, virtually cut off from foreign aid, and struggling with the aftermath of the generations-long Somoza dictatorship, which enriched one family and impoverished an entire country. The spirit of solidaridad that developed during the Revolutionary Period formed the template of a unique civic identity in Nicaragua, which still motivates the actions of both individuals and organizations. To scholars of citizenship, solidaridad would be recognized as containing elements of civic-republican citizenship. Republican citizenship, which was first articulated in Ancient Greece, is based on the notion that citizenship is based upon a willingness not only to contribute, but often sacrifice for the public good. The bonds of “reciprocity, trust and readiness to assume duties for the community” instilled by civic-republicanism in Ancient Greece was understood as a necessity of survival for both individuals and the state (Preuss 2003: 4; see also Pocock 1998). Similarly, it is hard to imagine that Nicaragua could have survived, much less progressed, during the Revolutionary Period if its citizens were not organized around the ideals of solidaridad. Several of the DPOs in the room that day had grown out of the Revolutionary Period, and would even refer to themselves as solidaridad organizations. Sandinista soldiers returning from the front lines, determined to make the promise of the Revolution a reality in their local community, founded Los Pipitos, the Association of the Blind, and the Organization of Disabled Revolutionaries. This sort of civic participation, which harkens back almost forty years, yet still active today, continues to receive international accolades. A recent World Bank report highlighting the fact that Nicaragua’s school enrollment and maternal health-care outcomes are far higher than other countries with similar levels of economic development, credited these outcomes to “pioneering strategies to fight poverty” through projects that “leverage local initiatives that stretch limited resources further and deliver sustainable results” (DEVEX 2016). Under DRF’s parameters, however, the members of Segovia’s DPOs were forced to brainstorm ideas that were in line with DRF’s emphasis on civic participation through human-rights advocacy rather than solidaridad. Martha, vice president of ADIFIM – which had been established long after the Revolution, just a few years earlier as the result of a workshop and seed funding provided by a Danish disabilityrights NGO – suggested an “accessibility fair” similar to one she had attended in a neighboring city. Humberto, the leader of ex-Contras with disabilities and a long-standing critic of the Revolution and the Sandinista government, suggested doing a presentation in Segovia’s central plaza on disability human rights and the law. One of the twin teenage sisters who led the Association of the Deaf, which they Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

Grant Guidelines and Guardrails

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had founded with a group of classmates a year earlier, signed her suggestion of a disability fiesta where they could build awareness about the right to disabilityinclusive education. The suggestions kept coming. They were based on a different vision of civic participation – liberal-individualist citizenship, namely, that individuals and organizations owe nothing to the state because citizenship is a right open to all and not a reward for carrying out certain duties or living according to specific values. Since the writing of Hobbes, Mill, Rousseau, and others, beginning in the seventeenth century, liberal citizenship has been the basis of theories of rights that have undergirded the protection of citizenship being extended to all, no matter their race, class, gender, religion, or any other distinction, including disability. While Nicaragua prides itself on the idea that everyone is included, liberal citizenship differentiates itself from solidaridad by focusing on rights claims upon the state as the primary, if not exclusive, way of promoting equality. As such, liberal-citizenship movements focus on nondiscrimination protection, equal access to public goods, and other state actions, rather than self-help and shared sacrifice (Marshall 1998; Oldfield 1998). At long last, the coalition reached a decision that met DRF’s criteria. The coalition would organize an Intercambio (exchange) between the DPOs and the local government where they could promote their rights under the UNCRPD. They would invite international NGOs and national DPO networks, too. The plan was that the coalition’s leaders from each of the different DPOs would talk about their members’ rights and experiences with accessibility, employment, education, and health. Then they would invite representatives from city planning and the local offices of the ministries of labor, education, and health to defend themselves where they had fallen short and explain what they were currently doing to ensure those rights would be implemented. They chose December 2 as the date because it was the last weekday before the International Day for Disability (December 3) and still a month away, giving the coalition time to plan the event. It was also still early enough that they could close the books on the grant before the end of the year, showing that they had completely spent the money and used it properly. Someone began taking down the names of government employees whom they should invite as guests, all people with whom they were on a first-name, friendly basis. While the immediate conversation during that meeting had been about the seemingly mundane subject of how to spend grant money in a way that complied with stipulations set by a funder, the discussion was actually much more fundamental. It was a discussion about how grassroots associations of PWDs participate in their communities. Solidaridad represents an expansive role for civil society, where organizations do everything from responding to floods to educating the broad populace by mobilizing volunteers, pooling their resources, and implementing projects that often both address their members’ individual needs and advance the broader social and economic goals of the state. Human-rights advocacy, however, represents a very narrow role for civil society as essentially legal advocates focused on Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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Spending Down a Grant

holding the state accountable for implementing certain rights and protections. Both are forms of civic participation that bring citizens together to identify and address problems and otherwise help shape their community’s future (Adler and Goggin 2005: 236; Lichterman 2011: 227), but they do it on the basis of very different notions of how societies work and the role individuals and groups should play within them if they want to improve their lives and the lives of others. The passage of the UNCRPD and the international disability movement of global DPO networks and international rights-based NGOs, such as Handicap International and DRF, support rights advocacy as the sine qua non of civic participation. DPOs engaging in human-rights monitoring, whether by issuing reports of rights violations or hosting intercambios, is broadly believed by all of the main players in the international disability movement to be the key toward ensuring PWDs become fully included and valued within their communities. This emphasis on DPOs doing advocacy has not only become an article of faith within the international disability movement, but has also been inscribed into international human-rights law. As will be discussed below, the UNCPRD ascribes DPOs a specific role within society and in relation to the state. In Segovia, however, fate and faith often motivate organizations to go beyond simply advocating for change, but being implementers of change through solidaridad. Solidaridad groups not only present their members as contributors who are helping to build a better community, but enmesh them in relationships that may be vital for getting through a time of need, especially when the state is unable to fully respond. To hundreds of disabled persons in Nicaragua who are members of DPOs like those in Segovia, the risks and rewards of embracing one style of civic participation over the other could not be higher. The form of civic participation these associations embrace helps determine who their members are in the community and how they take part in the local and global worlds surrounding them. The fundamental question this book explores is: “How do PWDs and grassroots DPO understand themselves as members of civil society in the era of disability human rights?” I will argue throughout this book that this question exposes a paradox in the UNCRPD, which I believe is a harbinger for international human-rights law to come. The purpose of the UNCRPD was to empower people with disabilities within their communities, yet, through this new international law, disabled people at the local level potentially lose control over the form, function, and content of their civic participation. While the convention defines a broad array of rights for disabled persons, it also lays out a very specific normative blueprint (or institutional model) of how their organizations should behave. In this way, human rights not only reach down to, but potentially uproot, the grassroots associations of PWDs that the CPRD is meant to protect. Understanding how local groups respond and do (or do not) manage the changes of norms of civic participation and organizational models for DPOs is essential for understanding international human-rights instruments and human-rights movements in the past, present, and future. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

The Ends, Means, and Organization of Participation

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the ends, means, and organization of participation The Preamble of the UN Disability Convention includes the term “participation” four times, and the remainder of the convention uses it an additional twenty-five. The most important use of the term participation in the convention is in its definition of disability itself. The UNCRPD defines disability as “resulting from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” (my emphasis, Preamble e). This is the social model of disability, which conceptualizes disability as the product of societal discrimination and marginalization directed against individuals who have physical, mental, intellectual, or sensory differences. As Vic Finkelstein, father of the social model and founding member of the Union of the Physically Impaired Against Segregation, formed in the United Kingdom in 1972, put it: “It is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society” (my emphasis; UPIAS 1975: 3–4). The slogan of the international disability movement is “Nothing About Us, Without Us.” Its meaning is explicitly about civic participation in the public-policy process. Union of the Physically Impaired Against Segregation (UPIAS) and its counterpart organizations in the American disability movement used the social model to mobilize PWDs in an effort to identify and replace laws and policies that marginalized them from the larger society. A social-model analysis of the discriminatory laws that were on the books highlighted the fact that not only have PWDs been excluded by law, but they have also been excluded from the lawmaking process. Heretofore, laws and policies regarding PWDs had been advocated for, written, and sponsored by nondisabled people, namely charities seeking to “care” for PWDs or associations of medical specialists advising how to “cure” or “fix” them. As a result, disabled persons had been the object of these charitable and professional organizations providing advice on their behalf, but they had never been members of these organizations nor otherwise enabled to advocate for the very laws and policies that directly affected them. In order to foster change, disability advocates saw the need for their own organizations – organizations of, for, and by PWDs – to gain a seat at the table and establish a more inclusive political, social, and legal order. Thus, legal advocacy through DPO became another dimension of participation and the preeminent understanding of civic participation. Not only was a participatory (i.e. accessible and inclusive) society the end the disability movement sought, but organized political participation through DPOs became the means of choice for achieving it. Judy Heumann, a contemporary of Finkelstein and today recognized as a co-founder of the American disability movement, established Disabled in Action Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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in New York in 1970 as one of the first membership-based DPOs in the United States. Disabled in Action was founded for the purpose of mobilizing PWDs to participate in advocacy. The mission of Disabled in Action (DIA) is: “To raise consciousness among people with or without disabilities concerning ableism, paternalism and derogatory attitudes, as well as laws and customs that oppress disabled individuals in American society; To enact and enforce effective legislation and budget initiatives promoting our ability to live independently by mandating equal access. . .To provide the organizational basis for disabled activists to join in effective unified political action” (Disabled in Action 2014). DIA’s mission statement is exemplary for what Western DPOs have sought to do from 1970 forward. The mission of DIA also demonstrates the multidimensionality of participation from a social-model perspective. PWDs need to develop a political consciousness that will drive them to come together collectively to advocate for a more participatory society. The mission statement is also self-reflective, not only in terms of what individuals with disabilities need to be (i.e. politically conscious) to create change, but also on their need for organizations to effect that change. The last line of DIA’s mission statement explicitly states that DIA’s purpose is “to provide the organizational basis for disabled activists to join in effective unified political action” (my emphasis). In short, civic participation for PWDs is only possible through advocacy organizations. On the other side of the Atlantic, the founding documents of the UPIAS also specified the importance of PWDs participating in advocacy organizations as the primary means for ensuring the state provide “arrangements for us [disabled persons] to participate fully in society.” UPIAS’ charter states that the Union “aims to ensure that all the organizations concerned with disability become fully democratic and responsive to the real needs and wishes of disabled people. We [disabled persons] therefore seek a much greater say in all the organizations which affect our lives, both by Union members as individuals and by other disabled people” (my emphasis; UPIAS 1975). What this effectively means is that any organization advising the state on disability law or policy needs to represent the voice of PWDs rather than of the doctors or donors who might have first established those organizations. It is through this lens of the Western disability movement’s emphasis on organizations that, in addition to the UNCRPD’s definition of disability according to the social model, the term “participation” is used in the convention to mean civic participation as political advocacy through DPOs. A direct line can be drawn between the Western disability movement’s emphasis on DPOs being platforms for political advocacy through to specific articles in the UNCRPD today. The convention reflects the Western movement’s emphasis on PWDs participating in defining their rights and holding governments accountable by mandating that DPOs be included in the implementation and monitoring of UNCRPD itself through a number of “groundbreaking provisions” (Sabatello and Schulze 2014: 24). First, the UNCRPD states that States Parties are required, “in the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

The Ends, Means, and Organization of Participation

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development and implementation of legislation and policies to implement the present convention, and in other decision-making processes concerning issues relating to PWDs, States Parties shall closely consult and actively involve persons with disabilities. . .through their representative organizations” (General Obligations, Article 4). Second, it reiterates the basic human right to freedom of association as PWDs having a right of “forming and joining organizations of PWDs to represent PWDs at international, national, regional and local levels” (Article 29). Finally, and most importantly, Article 33 of UNCRPD goes even further, causing the convention to stand out in comparison to all prior international human rights instruments in terms of the participation of organizations. This article on “National Implementation and Monitoring” specifies that: “Civil society, in particular PWDs and their representative organizations, shall be involved and participate fully in the monitoring process” of the UNCRPD (my emphasis). Through these provisions in the convention, the norm of PWDs joining their own organizations (i.e. DPOs) for the purposes of advocacy (i.e. advising, representing, monitoring) has been defined within the framework of international law itself. Maya Sabatello, international disability-rights lawyer and permanent civil-society representative to the UN on disability rights, has made clear how unique and important these provisions are: Although participation of NGOs and civil society organizations in human rights debates and enforcement has been on the rise, particularly in the past couple of decades, there is no doubt that the disability rights movement has taken it to a new level. For the first time in an international human rights treaty, the expertise of those to be protected under the Convention, including their representative organizations, is fully recognized. Importantly, the Convention established an explicit positive legal obligation on states to seek their input in all levels of development, monitoring, and implementation of disability rights. (my emphasis; 2014: 23)

In this way, the UNCRPD continues the tradition of the Western disability movement establishing DPOs for the purposes of legal advocacy. The UNCRPD, in fact, is the culmination of organizing work by the very people who established the first DPOs in the West. For example, the connection between groups like DIA, established in 1970, and the UNCRPD, passed in 2006, could not be more direct. Judy Heumann, DIA’s founder, went on from her work in New York to found DPOs in Berkeley, California, which became instrumental in advocating for and advising on the language of the civil-rights provisions in the 1973 Rehabilitation Act and, more importantly, the 1999 Americans with Disabilities Act. Following that work, Heumann became the World Bank’s first Adviser on Disability and Development in 2002, a position she used to organize the Global Partnership for Disability and Development (GPDD), drawing together networks of DPOs and progressive, rightsbased, international NGOs from around the world. GPDD then became the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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primary advocate for and principle adviser on the UNCRPD, which was adopted four years later and, as I argue, institutionalized political advocacy as the singular understanding of civic participation for DPOs. As a result, the Western organizational model of DPOs as advocacy organizations was not only globalized, but written into international law.

grassroots dpos as their own barriers to their rights in the global south Given the West’s successful history of establishing DPOs for legislative advocacy and government accountability, international disability advocates today see Articles 4, 29, and 33 as the keystone holding the UNCRPD together and local DPOs, like those in Segovia, as the linchpin for making it work on the ground. Michael Ashley Stein, Rehabilitation International’s delegate to the convention drafting process, points out that “the participation of persons with disabilities and DPOs in Convention related monitoring and implementation at all levels is both implicitly and explicitly woven throughout the entire fabric of the text” (my emphasis: Stein and Lord 2010: 697). In a later article, Stein goes on to explain that, as a result of the way the UNCRPD was written, it was now imperative that grassroots DPOs around the world fulfill their advocacy role because “coordinated actions among disabled peoples’ organizations are prerequisites for transforming the UNCRPD’s promises into reality” (Stein and Lord 2010: 27). There is, however, a major barrier to this prerequisite: many of the grassroots disability associations around the world are not anything like the political-advocacy DPOs that Stein would have had in mind. While PWDs have organized themselves into grassroots groups in hundreds of local communities around the world, many of these DPOs have historically been self-help and social-support organizations focused on rehabilitation, employment, and education rather than human rights. They are groups where people with disabilities help one another meet their immediate needs, such as fix a wheelchair or put a roof over their heads, or promote their individual development, such as learn a skill or benefit from a microloan. These types of activities are very different from “consciousness raising” and mobilizing people for political campaigns. Research conducted prior to the writing and passage of the UNCRPD has observed this difference. For example, Ingstad and Whyte point out that while DPOs in the North were concerned with rights, “in Southern countries, the groups [local DPOs] themselves often feel that the most immediate needs are for practical programs of rehabilitation” (1995: 24). Turmasani similarly describes DPOs in developing countries as too focused on “meeting their [members’] survival needs” (2003: 3) to bother with legal advocacy. These authors attribute these differences to the differing levels of economic development and relative impoverishment of PWDs Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

Grassroots DPOs as Their Own Barriers to Their Rights in the Global South

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between the North and the South, a difference many international disability-rights advocates seemingly ignore. James Charlton, co-founder of Access Living, a Chicago disability-rights advocacy organization, made a similar observation in his survey of DPOs across Latin America, Africa, and Asia, but came up with another explanation for these organizational differences in the Global South. Rather than argue that grassroots DPOs eschew politics due to their material conditions, he cites Gramsci to argue that the real problem is that the members of those DPOs suffer from a “false consciousness” and “self-pity,” on the basis that they have internalized negative cultural beliefs about disability and, as such, now constitute the “major barrier faced by the disability rights movement” (Charlton 1998: 70). In a similar vein, Sarah Phillips, an anthropologist studying DPOs in post-Soviet states, concluded that local DPOs there were “plagued by socialist legacies,” evidenced by the fact that they “have a narrow focus on shoring up social programs” (2009: 283). From Charlton and Phillips’ perspective, grassroots DPOs that deviate from the Western model of DPOs as political advocates are not pragmatic, but are “plagued” or pathological. Both move on to provide explicit prescriptions as to how these divergent DPOs can become “organizations of empowerment” (Charlton 1998: 130–151) and successful at “imbricating disability rights” (Phillips 2009: 275). In each of their prescriptions, they explicitly argue that DPOs in the Global South and Eastern Europe should model themselves after advocacy DPOs in the West. Phillips advocates that the DPOs in her study should “pursue international partnerships” and “travel to the United States, Canada, and other countries to participate in seminars, meet fellow activists, and become familiar with different approaches to rights issues” (291). Charlton argues that the global disability-rights movement should reach out to these groups to instill a “raised consciousness, which in turn is necessary for empowerment” (1998: 82). He goes on to outline the histories of the UPIAS and the Berkeley Center for Independent Living (another DPO co-founded by Judy Heumann) as the beginning of disabled persons’ “conscientization” and as forming the “core of the international disability rights movement” (130). What is significant about all of this prescription and advice is that it is unidirectional: PWDs in the Global South must change, presumably because those in the North have gotten everything right. Those who were directly involved in the weaving of DPOs as rights monitors into the UNCPRD worried that if grassroots DPOs in the Global South did not change, they would block the advancement of disability rights around the world. For instance, Gerard Quinn, the lead negotiator for a coalition of European DPOs during the drafting process of the UNCRPD, articulated this concern in a progress report on the writing of the UNCRPD he published in 2002. In it, Quinn argued that DPOs in developing countries “often fail to engage with the human rights system,” a statement he continued by arguing that “there is therefore a need for a new kind of disability NGO – or amalgam of NGOs – with a clear mandate to Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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monitor human rights developments around the world” (my emphasis: Quinn and Degener 2002: 179). From this perspective, the UNCRPD was never designed to incorporate existing (“deviant”) DPOs in the Global South, but to instead co-opt them and bring them into line in accordance with the UNCRP’s civil-society provisions. The “new kind of disability NGO” for the Global South that Quinn was advocating for was really an “old kind of DPO” in the Global North. The UNCRPD and the international disability-rights movement has made the Western DPO model a global standard based on groups such as Access Now, DIA, and UPIAS. As a piece of international human-rights law, the UNCRPD was not designed simply to alter the actions of the state, but to reshape the nature of the civil-society organizations representing the very people the convention protects – DPOs.

reshaping dpos in the global south The limited options Segovia’s grassroots disabled persons’ associations faced as they tried to figure out what to do with the leftover $200 were there by design. The DRF, founded in 2008 by a group of disability-rights advocates and funders who supported the UNCRPD, describes itself as “a grantmaking collaborative that provides grants to DPOs to strengthen their participation in the advancement of human rights of persons with disabilities” (my emphasis: Disability Rights Fund 2011). The choice of the Intercambio that the CDIS coalition settled upon in Segovia was never meant to reflect the priorities of the organizations in that room, but instead was meant to fulfill the UNCRPD’s civil-society mandate that DPOs are involved in the “development, monitoring, and implementation of disability rights” (Article 33). The Intercambio fits the bill of a civil-society effort to hold governments accountable to their obligations under human-rights law. The fact that many of the leaders in the room did not see how this activity would directly benefit their members was seemingly beside the point. In December, about a month after the original CDIS meeting, the disabilityrights Intercambio went off well, in that twenty-six people came, including several representatives from each invited government office. A banner across the back wall read “Forum for the promotion of rights ‘together’: A world for all includes persons with disabilities,” and UNCRPD pamphlets were spread on top of the tables. The forum began with a speech from Ernesto, a Nicaraguan program coordinator for HI. Ernesto lectured the audience, directing his attention to the members of the DPOs, about the project HI conducted several years earlier in 2007. They had made an assessment of all of the disability associations in Segovia and found that the different organizations were all doing different things. “You were weak,” he told them. He went on to explain that HI had decided to bring all of those organizations, which were now represented in that room, together, to form a coalition – CDIS – in Segovia to advocate for their rights under the UNCRPD, which Nicaragua had Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

Reshaping DPOs in the Global South

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signed and ratified earlier in 2007. Ernesto concluded: “When you work together, you have a significant impact. This process [HI’s organizing of CDIS] gave you more knowledge and skills so that you can take advantage (aprovachar).” He then listed what they had accomplished, including a handicap parking spot in front of the City Hall and a ramp up to its main entrance, both paid by the city in response to their advocacy. “You now have access, but need to fight for more.” As I had learned throughout my field research, Ernesto’s speech was typical. As a representative of the international disability movement, he followed a rhetorical format that characterized local DPOs as a problem (“weak”), strengthened by an international intervention (“more knowledge and skills”), but ultimately failing to do the level of advocacy expected of them (“need to fight for more”). It also struck me as out-of-touch, in so much as I had not met a single disabled individual in Segovia, where the average wage was just $3.00 a day, who was wealthy enough to own a car and thus benefit from handicapped parking. It struck me that the brightly painted spot in front of the City Hall was symbolic in multiple ways. Luis, the leader of the Association of the Blind, raised his hand to respond to Ernesto and began speaking. He wanted to make a point about the right to access being more than a ramp up to the City Hall. “In my opinion, accessibility is more than physical access, but also communications and information, which is why learning Braille is essential.” Luis then began talking about the Association of the Blind, which he had founded almost twenty years earlier. In the late 1980s, when Luis returned to Segovia from Cuba – where he had been sent for rehabilitation after being blinded from an explosion as a Sandinista soldier fighting the Contras – he began the association as a self-help group of PWDs. Luis had realized he was the only blind person in Segovia who knew braille, a skill he acquired during his rehabilitation and something he became determined to pass on to others. The Association’s main program now was a “micro-school” where teenagers from the countryside came into Segovia for several months to study braille and learn skills for independent living, which began with using a walking stick and public transportation and often ended with job placement in a local tobacco processing plant or small business. In Luis’ words, these activities were “necessary and essential” for a person to access their rights. As Luis continued talking about the Association of the Blind and how important it was that the micro-school and employment project be supported and expanded, Ernesto seemed uninterested; he checked his cell phone and then left the podium, to which Luis, who was blind, continued to direct his statements. By the time Luis finished, Ernesto had left the room and gone outside where he was giving an interview to a local newspaper reporter about the importance of respecting the human rights of disabled persons. This type of interaction I would learn well, too. Local DPOs often emphasized that their practical activities were essential not only for life, but for advancing rights. Yet, because they were not explicitly about political advocacy (i.e. carrying a placard or broadcasting demands through a bullhorn), they were ignored. Given the fact Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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that local DPOs are often depicted as a barrier to the UNCRPD, it should be no surprise that their thoughts about how to advance their rights hold little value to international activists and disability-rights professionals. In fact, CDIS’s submission for another grant from DRF would be rejected a few months later. Luis never found out why, explaining to me that their email requests for an explanation had gone unanswered. He suspected it was rejected because they had requested money for the DPOs in CDIS to do more concrete things, including funding the expansion of a bicycle repair shop that brought money into the Association of the Blind used to support their services. Luis was upset because he felt that CDIS had always done whatever DRF had asked for in the past, even using their own money to advance international organizations’ goals rather than their own. Luis was now frustrated, almost grateful that the funding relationship was over, although he had hoped that, this time, the DRF would fund something that would help his DPO and the other members of CDIS achieve their own goals. In an expression of frustration, he once told me that he could find “no logic” in DRF’s funding goals. What Luis did not realize, however, was that there was plenty of logic to DRF’s funding. It was a global logic emanating from the UNCRPD. Local knowledge, including his, had no role to play. Human rights creates claims people have upon their respective states; thus, from a human-rights perspective, civil-society organizations’ primary function is claimsmaking. According to the UNCRPD, services – such as: disability-inclusive education, which includes braille education (Article 24.3.a); the provision of rehabilitation, such as leg braces and other assistive technologies (Article 26.3); and even assuring an adequate standard of living (Article 28) that could mean Fatima has enough spare cordobas in her pocket so that making a few phone calls would not constitute financial hardship – are all the state’s responsibility. Western DPOs, such as DIA or Access Living, were successful because they made legal claims that, when written into legislation, such as the 1990 Americans with Disabilities Act, moved disability from being understood as a charity issue to being a rights issue and, as a result, a state responsibility. In a rights-based understanding of civil-society organizations, there is no place for Nicaraguan solidaridad, the idea of grassroots groups stepping in to take care of their own or care for others, because by “stepping in,” they are seen as letting states off the hook from being held accountable for implementing those rights. Solidarity organizations like the Association of the Blind are organizational deviants from the perspective of international human-rights law, irrespective of local cultures of civic participation, conditions of economic development, governmental responsiveness or capacity, or even the expressed needs and desires of the memberships of these grassroots organizations. DPOs in the Global South are targets for change, actively being reorganized to reflect the Northern DPO conception of civic participation as rights advocacy. Disability civil society is actively being homogenized around the world according to the DPO model embedded within the UNCRPD. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

Civilizing Disability Organizations

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civilizing disability organizations In recent years, many prominent disability-studies scholars have turned to postcolonial theory as a means of understanding disability in the Global South (see, for example: Grech and Soldatic 2015; Meekosha 2011; Sherry 2007). In this literature, disability is argued to be an outcome of the “civilising mission” of colonialism (Ghai 2012; Grech 2012, 2015). According to their research, persons with impairments, who were often integrated and included in their native communities prior to colonialism, quickly became targets of colonial medicine and charity work because they were deemed “sick,” “defective,” or “pitiful” by colonial physicians and missionaries. Subsequently, they were either “rehabilitated” to better fit within the colonial norms or were removed from their families and institutionalized in hospitals, orphanages, and other places segregated from society. As a result, colonized people learned that impaired persons were the “social other” and, therefore, they were disabled according to the social model’s definition of disability as the product of a discriminatory society. The base of this disablement was modernity’s focus on “normalization” and “standardization” (Hughes 2012: 21–22), wherein norms, including norms for the body, mind, and behavior are established. These norms are then used to systematically categorize anyone who significantly deviates from the norm physically, mentally, or behaviorally as physically, sensory, intellectually, or psychologically disabled. Some of this new postcolonial disability literature has been critically self-reflective on disability-studies scholarship and disability activism itself, showcasing the way in which the international disability movement also establishes norms that marginalize PWDs and their allies in the Global South. Meekosha (2008), for example, argues that “disability studies has emerged out of the northern metropole and is now being imported/exported to the southern metropole without reference to southern disability theorists or southern contexts,” thus creating a “form of scholarly colonialism” (1). Grech (2015), in a similar argument, calls for “decolonising global disability discourse” (8) because of its Eurocentric roots. In each case, the authors point to Western disability scholarship and the international disability movement as having the ability to define the conceptual terrain of disability in the Majority World (i.e. the Global South). To date, however, none have examined this process in relation to norms of civic participation and DPOs. The rights advocacy model for DPOs outlined within the UNCRPD has remained sacrosanct despite the fact that, as an international human-rights instrument, the convention’s civil-society mandate is reordering the form and function of grassroots associations that PWDs depend upon in daily life. Despite her stated suspicion of the international disability movement, Meekosha points to the UNCRPD as the potential avenue for decolonizing disability studies and the global disability movement because it promotes advocacy on the part of disabled persons. She argues that “the time is ripe for developing southern/Majority Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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World perspectives on disability. The UN Convention. . . gives some disabled people rights for the first time. It opens up the opportunities for greater debate about the lived experience of disabled people in the South” (Meekosha 2008: 5). While I agree debate is needed, I depart from Meekosha in so much as I believe Articles 4, 29, and 33 of the Convention predefine the means and ends by which PWDs will be able to participate in “debate.” What that means is that DPOs that do not fit the UNCRPD’s model by focusing on self-help and service provision are likely never to be asked to join the conversation, but will instead be left out of any international DPO forum, either by not being invited or because such grassroots associations are likely to have much more immediate priorities. There will be no significant development of southern/Majority World perspectives if all forms of disabled persons’ associations are “civilized” to fit according to the West’s institutional model of civic participation through political-advocacy DPOs. While Meekosha calls upon the UNCRPD as a tool promoting diversity, she misses the point that it is actually an instrument of homogeny. The irony of the UNCRPD is that it is a human-rights law designed to promote the equal participation of PWDs that does not treat all forms of participation equally. The authors of the civil-society mandate validate political-advocacy DPOs as the only legitimate model for PWDs’ civic participation.

reorganizing the world through human rights The organizational effects of the civilizing process of the UNCRPD on DPO, the representatives of the marginalized group it was developed to protect, brings into high relief a process heretofore largely ignored in the majority of approaches to international human-rights instruments. Law, obviously, is meant to change behavior. But with human-rights law, the behavior it is normally understood to be changing is the behavior of states – the signers and ratifiers of international conventions. Indeed, Risse, Ropp, and Skikkink (1999) argue that finding out how effective human rights are at changing state behavior is the most important question that can be asked about human rights. Their much-cited volume The Power of Human Rights: International Norms and Domestic Change (1999) begins by asking: “Have the principles articulated in the Declaration [Universal Declaration of Human Rights] had any effect at all on the actual behavior of states towards their citizens?” (1). This research agenda has been embraced and yielded volumes of both affirmative and negative findings. When civil society is included in the answer to this question, it is in terms of international and grassroots organizations’ supporting role in pushing states to abide by international human-rights law’s norms (see for example: Brysk 2013; Keck and Sikkink 1998; Simmons 2009; Welch 2001). As the UNCRPD demonstrates, however, more than the behavior of states needs to be questioned in terms of human-rights law’s effect. In a revision of Risse and Sikkink’s question, I believe it is important to ask: “Have the principles articulated in Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

Observation at the Intersection

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the Convention on the Rights of Persons with Disabilities affected the behavior of disabled citizens and their representative organizations toward their state?” In short, what do human rights do to grassroots organizations, the building blocks of civil society and representatives of those protected by human rights? How does international human rights push civil society to abide by its norms? Namely, how does the UNCRPD determine the participation of DPOs? By the end of this book, the implications of my research on the organizational effects of the UNCRPD on grassroots disability associations in Segovia will be clear. The UNCRPD may be the first core international human-rights instrument to explicitly promote the participation of local civil societies in its implementation and monitoring, but it will not be the last. Organizing marginalized groups for political advocacy is a widespread strategy of global human-rights campaigns and human-rights-based approaches to international development. But what this means in terms of one global organizational model of civic participation intersecting with local organizational models is not known.

observation at the intersection Research on international human-rights law mobilizing local civil societies needs to begin viewing grassroots associations as sitting in the center of a Venn diagram where different visions of organizing and civic participation come together, each informing the way discrete groups understand their role within their communities. I began my ethnographic work in Segovia in 2008 at the center of this intersection, just two years after the UNCRPD was adopted by the General Assembly, one year after Nicaragua signed onto the convention, and just months after HI, DRF, and other international disability NGOs and networks began providing capacity-building support to Segovia’s grassroots disability associations to engage them in advocacy. The Departmental Commission for Advocacy and Awareness (CDIS) was organized by HI and DRF at that moment, precisely for the purpose of mobilizing those groups for holding the government accountable for providing the services and opportunities they, as civil-society organizations, had long provided. Self-advocacy was imported as a replacement to self-help. I subsequently spent the next two summers (2009 and 2010) and then an eleven-month period spanning 2011 and 2012 as a participant observer of the coalition and its member organizations. The timing and location of my study allowed me the perfect opportunity for seeing the meanings and practices that died, survived, and were newly created out of two understandings of civic participation – the UNCRPD’s political advocacy model and Nicaragua’s solidaridad – in the everyday life of each of Segovia’s grassroots disability associations. There are a number of communities in Nicaragua with a disability-rights coalition, so I chose Segovia from among them because it was a city somewhat off the beaten path in terms of Western development work and tourism, which has become well established in cities like Managua, Leon, Granada, and Ometepe island. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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I wanted to observe global disability human rights’ long reach into a “local” community. This turned out to be a lucky choice, because many of Segovia’s organizations were decades old and even those that were new recruited members imbued in Nicaragua’s civic traditions. Segovia is located in a region that had been a Sandinista stronghold prior to the 1979 Revolution and thereafter received the brunt of Contra attacks during the Civil War (1980–1990). As a result, the culture and practice of solidaridad and organizing grassroots social-support and service associations was strong, thus informing the local citizenry included disabled persons’ conception of civic participation. In other ways, Segovia is typical of Nicaragua, in that it has an economy dominated by agriculture and low-skilled manufacturing. In Segovia’s case, tobacco is the major cash crop and cigar-rolling factories the largest employers, paying workers approximately $130 a month, close to the country’s average real GDP of about $1,700 per person. Nicaragua is the second poorest country in the Western Hemisphere, next to Haiti, yet also a standout for maintaining high levels of economic growth in recent years. Segovia was a city that was considered neither wealthier nor poorer than average and, with a population around 130,000, was part of a large handful of cities in the region of similar size and political and economic importance. It received a significant share of attention from both Nicaragua’s national government and international organizations, including international disability-rights NGOs and global DPO networks, but not significantly more than its peer communities. On a daily basis in Segovia, I attended meetings, workshops, and other events organized by or for local disability associations. I also joined local organizations’ leaders and staff in their daily activities, spending time in their offices, accompanying them as they visited the homes of their members or met with various government agencies and/or businesses, or volunteered within those groups offering services. At the beginning of my field work, I provided each association with a description of my research project, the intended use of the data collected (i.e. academic publications), and their rights as associations to operate discretion over the activities I observed (a right they never claimed, always inviting me to take part in everything). In turn, each association provided me with a formal invitation stating that they understood my research objectives and their rights. My participant observation was supplemented with semi-structured interviews. Interviewees were provided with consent forms and explained their rights as research subjects. I also provided them pseudonyms. Over the years, I recorded sixty-nine formal interviews, which usually went more than an hour and sometimes up to two, and I also attended dozens upon dozens of activities in Segovia. In addition to my research with the grassroots associations, I also met with and interviewed the leaders and staff of national disability associations in Nicaragua, all of which were headquartered in Managua, the capital, and interviewed international disabilityorganization employees working in Nicaragua, many of whom came to Segovia to Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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evaluate the local DPOs and implement capacity-building projects for them, such as human-rights advocacy training or consciousness-raising workshops. Finally, I made a number of trips to New York, Washington DC, and Geneva to participate in international disability-rights meetings and interview the directors and program coordinators of UN agencies, international disability NGOs, and global networks of DPOs. In this latter work, I was able to speak directly to many of the advocates and authors of the UNCRPD and ask questions specific to the role they foresaw for DPOs in the Global South. Through this research, I was able to place myself at a unique vantage point from where I could observe the ways in which the local organizations in Segovia intersected with the new norms wrought by the UNCRPD. As an organizational ethnography, my analysis places the member DPOs of CDIS at the crossroads of two institutional fields – solidaridad and political advocacy – each proffering different models of what grassroots disability organizations ought to be. In a different usage of the term “intersection” and “intersectionality,” this vantage point also revealed how disability identity intersects with different civic identities. While disability-rights advocates and disability-studies scholars have become increasingly adept at recognizing how disability intersects with race, ethnicity, gender, sexuality, and so forth, there continues to be little attention to intersectionality on the basis of civic identity. The Western disability movement has always emphasized PWDs as liberalindividualist citizens in the tradition of the civil-rights movement in the US or the labor movement in the UK. My research in Segovia taught me that PWDs perform different civic identities from those dominant in the West (or at least Western theory). In Nicaragua, identifying as someone in solidaridad means you identify as the type of citizen who pulls together with others to share what you have and build one another up. There is a palpable sense of pride people in Nicaragua carry in their collective self-reliance and their ability to organize and accomplish feats the state could not do alone. This is a civic identity that is very different from the Western disability activist’s identification as a political advocate who is forcing an all-powerful state to recognize their rights and implement laws and policies that will promote their full equality. These differing identities get represented in the organizations that PWDs form and participate in, yet the UNCRPD and the international disabilityrights movement does not recognize disability and civic identity as an important dimension of intersectionality.

institutionalized organizations Understanding the spread of human rights as the dissemination of organizational models is not a new insight, nor is it a new framework for analysis. This is the core of neo-institutionalist analyzes of human rights, which has been done from a variety of disciplinary perspectives. “New” or “neo”-institutionalism simply views institutions, formal and informal “rules and belief systems” (Scott 1992), as shaping and Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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legitimating organizations belonging to the same field (or societal space) (Meyer and Rowan 1977). It is a theory of isomorphism that explains why organizations eventually submit to an organizational form of peer pressure. Willfully, or as a result of coercion, once-diverse organizations eventually all start to look the same. As such, DPOs in the Global South, while distinct from Western DPOs in their histories, form, and function, are increasingly pressured by the UNCRPD to embrace political advocacy. David Meyer’s “Institutionalized organizations: formal structure as myth and ceremony” article (Meyer and Rowan 1977) and DiMaggio and Powell’s 1983 article The Iron Cage Revisited, are often credited with reviving institutionalism, which has roots in Max Weber’s studies of rationalization and bureaucratization, within organizational sociology. As a framework for analysis, it disseminated broadly across the social sciences and was soon applied to human rights (Meyer et al. 1997), globalization (Boli and Thomas 1997), and international relations (Finnemore 1996). In the majority of these neo-institutionalist approaches to global phenomena, the focus remains on the way in which international norms “socialize states” (Goodman and Jinks 2013). Instead, I am using neo-institutionalism to show the way it socializes, or “civilizes,” grassroots organizations. Qualitative methods are particularly useful for studying organizations embedded in organizational fields, because you can see that by going deep into Segovia’s DPOs, rather than simply homogenizing, some are actively reinterpreting political advocacy. Sociological institutionalists typically rely on large “field studies” that identify “surface similarities” between organizations (Hallett 2010: 55). While important, this practice overlooks the way change is negotiated within organizations (Hallett and Ventresca 2006) in relation to preexisting organizational models. Members of organizations, such as the disabled people who join DPOs, often attempt to “interpret change in the institutional environment based on how they have defined their prior experience within that environment” (Everitt 2012: 205) and often create as much diversity as they do similarity when the old clashes with the new (Lounsbury 2007). By explicitly theorizing grassroots groups as belonging to more than one institutional field and thus responding to diverse sets of norms of civic participation, I am able to highlight these internal tensions and subsequent negotiations to show why some groups submit to change, others resist, and still others actively create something new. After laying out the broad norms of civic participation in the West and in Nicaragua in the next chapter, I use Chapter 3 through 6 to theorize organizational change from the internal perspective of Segovia’s DPOs.

chapters to come In Chapter 2, I make the case that the DPO model embedded in the UNCRPD reflects a larger global trend promoting civil-society organizations as rights advocates. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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Increasingly, multilateral organizations, international NGOs, and global networks have sought to shape grassroots associations throughout the Global South according to a narrow definition of civic participation. This shaping process often explicitly delegitimates local alternatives. Nicaragua offers a useful case study for understanding the roots of specific organizational models and the ongoing clash between local and global models of civic participation. Using new institutional theory, I begin the chapter by describing the structuration process (DiMaggio 1991) of Nicaraguan solidaridad through a brief history of the ideological and organizational dimensions of the Nicaraguan Revolution (1979–1990) and Sandinista experiments with “democratic socialism” during a period of conflict, international sanctions, and economic stagnation. During that period, not only did the majority of the population belong to “popular” or “mass” organizations (Anderson and Dodd 2005; Babb 2001; Ruchwager 1987), but a civic mythology and organizational script was forged that still informs societal expectations of what grassroots associations should do today. It was during this same period decades ago that a specifically Western understanding of civil society was increasingly globalized in both theory and practice. As Habermas was theorizing the “public sphere” as a way by which civil society would use reasoned discourse to critique the state and inform public policy, North American and Western European governments and international NGOs worked in tandem to actively promote civil-society organizations in the Global South that would monitor political and civil rights in the face of autocratic and Communist regimes. The two models of civic participation very publicly clashed in Nicaragua, symbolized by Pope John Paul II’s chastisement of Ernesto Cardenal on Managua’s airport tarmac during a papal visit in 1983. Cardenal, a priest, liberation theologian, and Nicaragua’s Minister of Culture, was using his government post to organize people into mass organizations, not for the purposes of holding the state accountable, but for the explicit purpose of advancing Sandinista education and health policy through popular service, volunteerism and self-help. The Pope, however, had a very different vision of civil society. John Paul was using his moral and organizational authority as the head of the Catholic Church to foster civic organizations that held back the power of the state and advocated for political and economic freedom. The irony of the clash is that both were promoting “solidarity,” Ernesto’s solidarity best exemplified by his solidaridad work organizing Nicaraguans to increase literacy rates in rural areas through the Sandinista “Literacy Crusade” and Pope John Paul’s solidarity work in support of Poland’s Solidarność, a trade union that led the political crusade to roll back Soviet Communism. Chapter 3 delves into Segovia’s local chapter of Los Pipitos, the Association of Parents of Children with Disabilities, which was founded as a mass organization by a Sandinista commander and his wife who gave birth to twin girls with Down syndrome just after the Revolution. Los Pipitos Youth Center had become the pride Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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of Segovia, having started as parents of children with impairments coming together in the 1980s to start a preschool where mothers took turns volunteering as the instructors of their children with disabilities. Within a twenty-year period, it transformed into a large complex of services that was a matter of pride to not only those parents and the benefiting disabled children, but the whole of Segovia. Los Pipitos was a national network of dozens of local chapters with a headquarters in Managua. Segovia’s chapter in years past had often been held up as the exemplar of what a local chapter could do. At Segovia’s Youth Center, several dozen young people with disabilities, the majority of whom had development disabilities such as Down syndrome, came daily to learn life skills, work in a number of workshops (carpentry, candle-making, etc.) that produced goods sold around town, and participate in social activities such as song-and-dance. The Center was also now a far cry from a voluntary group of parents, but instead a fundraising behemoth that everyone in Segovia seemingly supported and admired for its cadre of rehabilitation professionals who ran the programs. According to international disability advocates, however, Los Pipitos Youth Center in Segovia was the very antithesis of human rights for children and youth with disabilities. The UNCRPD’s Article 24 on Education establishes the right to inclusive education, which means that PWDs should be integrated and educated in the same public-school classroom as everyone else, rather than in separate, segregated, special schools. And this education, of course, should be publicly, not privately, supported as a state responsibility. The Center’s continuing popularity in Segovia after Nicaragua’s education laws officially opened public schools up to students with disabilities, however, soon made Los Pipitos the target of international disability organizations rather than the government because it was seen as the barrier to young PWDs achieving their rights. In the words of the head of disability at a major UN Agency, Segovia’s Los Pipitos was a “pretty little program” that grassroots DPOs around the world were refusing to give up. A number of strategies were pursued to change Los Pipitos in Segovia from a charity-based service provider into an advocacy DPO. First, the representative of a German disability NGO conducted a series of workshops at Los Pipitos on the UNCRPD. During them, she built up to the case that the Youth Center was a violation of human rights, an argument which the participating local board members, staff, and youth with disabilities found ridiculous. When no change came, the national office of Los Pipitos based in Managua, which was partnering with a number of international disability NGOs and UN agencies and had come to embrace political advocacy as the new road forward, began to exert its own pressure on the Segovia chapter. Eventually, the national organization resorted to dissolving Segovia’s recalcitrant local board and firing the Youth Center’s executive director, whom they replaced with the former director of an internationally supported women’s rights NGO based in Managua. The new executive director came to Segovia and within days shut down the Youth Center, at one point posting an Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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armed guard at the entrance to ward off parents, youth, and concerned citizens who had organized to protest her actions. A new agenda of weekly disability-rights consciousness-raising workshops for the Center’s former students was announced and a series of advocacy marches demanding more rights for disabled youth directed at the Mayor’s Office was organized. Within a month, none of the youth or the parents were participating, the majority of the disabled youth now at home or attending the local schools where they were often “integrated” into classrooms of fifty or more regular students and reportedly “learned nothing” and often refused to go back to after the first few days. Stories of the youths’ depression and regression circulated widely. The Los Pipitos parents eventually used their organization’s byelaws to argue that the local chapter could not continue to operate unless they were allowed to vote for a new board. Once elected, the new local chapter board, largely made up of the former board, fired the new executive director, reopened the Youth Center, but adopted a new back-to-basics strategy where all programming would be done voluntarily and by the parents themselves, as they had in the 1980s. The new president explicitly explained this action as a demonstration of Nicaragua’s culture of “solidaridad.” The failure of this coercive strategy toward promoting organizational change exemplifies the ways in which an old model of civic engagement – voluntary self-help – is actually distilled and given a new lease on life once threatened. Chapter 4 looks at two specific organizations that demonstrate one strategy by which DPOs as political advocates is disseminated globally: by international disability NGOs “manufacturing civil society from the outside” (Howell and Pearce 2001: 89). In 2008, a Danish disability-rights organization came to Segovia where, through a series of workshops and seed funding, they established ADIFIM, a cross-disability legal advocacy organization, for the singular purpose of fulfilling the UNCRPD’s civil-society mandate. HI similarly, in 2008, brought women with disabilities together in Segovia to create a new organization, the Organization of Women with Disabilities (ODIFOM). As a political-advocacy DPO, ODIFOM was tasked by HI with monitoring disability rights through a gender lens based on the UNCRPD’s Article 6 on “Women and Disability.” This Article states that women and girls with disabilities are the subject of “multiple discrimination.” As a result, international activists believe that women need their own DPO to monitor gender discrimination in their government’s disability policy and programming. In both cases, ADIFIM and ODIFOM began with a great fanfare and quickly garnered dozens of members. Enthusiasm, however, waned once the majority of PWDs realized that neither organization was set up to provide concrete social support. Frustration over “studying the law,” participating in consciousness-raising discussions, and reporting rights violations grew. Many of the Segovians with disabilities who had joined these organizations had wrongly thought they would provide social support and promote self-help. By 2012, ODIFOM was defunct and ADIFIM was in crisis. In each case, members had gone off to join nondisabled Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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persons solidaridad organizations to learn new work skills, access health care, or participate in rotating funds. Despite their members’ rejection of the politicaladvocacy activities, the leadership of each DPO was unable to respond. In both cases, the mission, byelaws, and, in ADIFIM’s case, funding, limited the groups to their rights awareness and monitoring activities. ADIFIM’s core leaders, however, were true believers in the UNCRPD and saw the attrition of members to more traditional Nicaraguan civil society organizations as a sign of their backwardness and a rejection of disability rights in lieu of beneficios (benefits). In ODIFOM’s case, the leader herself not only understood, but also abandoned the political-advocacy model to focus her civic participation on accessing economic opportunities for (disabled and nondisabled) women (and herself ) by joining a women’s sewing cooperative. The irony is that both groups continued to exist formally, speaking on behalf of “all persons with disabilities” or “women with disabilities” within CDIS despite having few to no actual participating members. Chapter 5 looks at the way that the DPO and solidaridad models of civic participation intersect to displace the specific identities and social rank of veterans with disabilities. The members of the Organization of Disabled Revolutionaries (ORD), who were all ex-Sandinista soldiers wounded in the Revolution and civil war, had long exemplified solidaridad in terms of service and sacrifice for the community. Their fallen comrades had given their lives and their limbs fighting for a better society. As a result, they have been held up as war heroes and defenders of the Sandinista democratic-socialist ideal. They also enjoyed many rights and privileges, but those rights and privileges were based on their exemplification of good civic participants in solidaridad, not because they were a vulnerable group marginalized in need of protection, as the UNCRPD frames disabled persons. The members of the Nicaraguan Association of the Disabled Resistance (ADRN), however, are a group in need of rights protections. They too, are wounded ex-combatants, but from the opposing side of the Civil War. As demobilized Contras, they had spent decades stigmatized as traitors for having sided first with the Somoza dictatorship and then later with the US Reagan Administration in an effort to subvert the Nicaraguan Revolution. Up until the UNCRPD, and even following it, ADRN members were routinely denied jobs and state services because they were seen as political enemies. According to ADRN’s members, disability discrimination was not a problem; instead, political identity was. With the advent of disability human rights, however, they now saw an opportunity to start making claims as rights-bearers under the UNCRPD in order to access resources previously barred to them as political pariahs. Thus, the ADRN was able to raise themselves up. The ORD, however, saw the UNCRPD as equalizing all PWDs, and thus causing them to lose ground. The ORD began subtly, and sometimes explicitly, to reject the notion of disability rights “in general” and continued to not only help one another as members, but to connect to local

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government officials by reminding them of their service to the community and special deservingness of support as exemplars of solidaridad. In this way, I show that human-rights instruments and political advocacy do not help all groups equally and not only bring some disadvantaged populations up, but also push advantaged groups down within specific contexts and meaning of civic participation. Chapter 6 explores the way in which one DPO managed to bring both models together to advance their ongoing cause of promoting new employment opportunities for PWDs in Segovia. Luis, the president of the Association of the Blind, had developed a nuanced view regarding the roles of both service and political advocacy in civic participation. He was also the most perceptive in understanding that international disability NGOs were actively seeking to change the practice of DPOs, but also that they did not understand the local context, especially in regards to scarce public resources and government capacity to implement the UNCRPD. To him, human rights represented a goal to works toward, but also a reason not to abandon, self-help and service provision, stating that “I believe that here the law is a desire or an objective for the future because you need to wait for the capacity. . . When an American person is thinking about the meaning of a new law, for example in Nicaragua, they believe that the words are a reality. But that is not [true] here. Right, it is impossible, yes?” As a result, the Association of the Blind reconceived advocacy as an extension of solidaridad. They would use their practical knowledge, established relationships, and even their resources to assist the local government in expanding its role as a promoter of disability rights. Since its beginning in the 1980s, promoting education and employment opportunities for persons with visual impairments in Segovia had been the Association of the Blind’s mission. Over the years they had developed a Braille and independent living “micro-school” and job placement service that trained and placed blind persons in local businesses. In 2011, the Mayor’s Office in Segovia launched the Agency for the Promotion of the Local Economy (APROE), an office dedicated to attracting businesses to Segovia and supporting existing ones in expansion. Upon hearing about this, the Association of the Blind approached APROE and showed them both the employment provisions in the UNCRPD and what they as organizations had been doing practically. Rather than demand rights, the Association simply asked if they could use APROE’s meetings with the local Chamber of Commerce to offer their services in placing and training their members, bringing along some of their top performers from a local cigar-rolling factory as a demonstration of the potential of PWDs in the workplace. Many employers became enthusiastic, recognizing that they could both get well-trained employees and be able to promote themselves as good, “inclusive,” corporate citizens in the eyes of the local government, which publicly congratulated businesses that had begun integrating PWDs into their ranks. As a result, not only was the Association of the Blind able to place all of their own members who were in need of a job, but expanded the service to

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include all of the members of CDIS. The jobs initiative represents a case of “bricolage” (Binder 2007) or “translation” (Haedicke 2012), where the rules and beliefs of two separate institutional environments are blended in a way that makes sense from the perspective of both models. Chapter 7 concludes with a discussion of the disability studies and the international disability movement through the lens of neocolonialism. It calls for the globalization of both, where Western roots are replaced by a recognition and respect of the diversity of disability experience around the world. This reframing of the movement is necessary to move beyond a singular organizational model for DPOs to allow PWDs in Segovia and the myriad “locals” elsewhere to fully participate in their communities in their everyday lives.

hand in hand in nicaragua Last, I want to close this introductory chapter by returning to the Intercambio that took place in Segovia to see what the members of Segovia’s DPOs ultimately did once the HI representative had left the room. Despite their desire to conform to the DRF grant, the exchanges in that meeting room were as much dictated by the DPO’s distinct role in Nicaraguan society as it was by the UNCRPD’s globalism. According to plan, the forum went on with the DPOs talking about their programing and their members’ needs followed by the local government representatives. Each representative from the Mayor’s Office got up to speak about their activities. Uniformly, they began their presentation by thanking each DPO in the room for all that they were doing to carry Segovia forward. They would then outline the progress their agency or office had made on disability rights, following their statement with a request for the continued help of those grassroots disability associations in the room. It was a call for the DPOs to do something very different from monitoring their progress or telling them exactly what they wanted the government to do. Instead, it was a call to work together. For example, a woman from the local Ministry of Education began by acknowledging Los Pipitos, which ran the Youth Center, to send some of their mothers to the school to teach teachers how to work with their kids. When it was his turn, the engineer from the city planning office pointed out that they had made curb cuts for the children’s park and widened entrances at the soccer stadium. Now he wanted to do the “banks’ corner,” a major intersection downtown. He had already secured the necessary cement, but he wondered if any of the groups could aid in the actual construction. The Ministry of Health office director listed a few things, but admitted much more was needed to be done, citing: “Providing wheelchairs is our obligation under the law.” She explained: “We would like to, but we need the financing to do it.” She asked the organizations to help her identify potential donors and promised to divide equally among them whatever chairs she was able to secure. And so on, Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:15, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.001

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down the line. Eventually, the Intercambio ended with many handshakes between the DPOs and government officials with promises to meet again soon. The DPOs in Segovia were definitely participating in advancing their rights. Perhaps their willingness to volunteer and help their government went beyond the narrow confines of “advising” and “monitoring,” as the UNCRPD defines their civic role, but each group left that room believing that the words of the convention were moving forward, and it simply required their own works to do so.

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2 Inhabiting Nicaraguan Civil Society at the Intersection

one pope, two tarmacs One of the most famous photos from the Sandinista Revolutionary Period (1979–1990) illustrates Western anxiety regarding Nicaragua’s unique form of civic participation through solidaridad. It also illustrates concern about non-Western interpretations and “implementations” of human rights. “A Scolding on the Tarmac” depicts Pope John Paul II having just landed in Managua, Nicaragua during his 1983 papal visit. In front of him, kneeling, is Ernesto Cardenal, an ordained Catholic priest, world-renowned poet, and, not least, cabinet member in the Sandinista-led government. The Pope, in full papal vestments, is holding up a finger to Cardenal, reportedly saying “Usted tiene que arreglar sus asuntos con la Iglesia (‘You must fix your affairs with the Church’).” From the ground, Cardenal, in a simple, collarless shirt, is looking up and smiling, seemingly with no intention of fixing anything (Dodson and O’Shaughnessy 1990: 187–190). He would remain Minister of Culture for another four years. The Pope’s admonishment of Cardenal is only the more significant because they were both engaged in very similar projects – using civil society to promote human rights. A couple of years before, John Paul II had landed on another tarmac, this time 6,000 miles away, to put the first chink in the armor of the Iron Curtain. The Cold War began to thaw when he took on a far humbler posture. On that visit, rather than attempting to reorder the life of a single, rogue priest in Nicaragua with a wagging finger, Pope John Paul would begin to reorder the lives of tens of millions when he got down on his hands and knees and “kissed the ground at the Warsaw airport [and] began the process by which communism in Poland – and ultimately elsewhere in Europe – would come to an end” (Gaddis 2006: 193). As a result of the Pope’s visit to Warsaw, Lech Walesa, an unemployed electrician, was inspired to found Solidarność (Solidarity), the labor union at the center of Poland’s anti-Communist civil and political rights campaign. The Catholic Church Downloaded from https://www.cambridge.org/core. Access paid by28 the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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in Poland, which was one of the few independent institutions in the Soviet Empire, used the Polish Pope’s gesture as permission to begin providing both moral and material support to a protest movement that eventually restored democracy and market freedom (Kennedy 2002). In that way, Poles were able to create a civil-society organization – Solidarność – that not only stood outside of the state, but also stood up to it. Equally significant, John Paul II chose human rights, rather than Catholic theology, as the idiom by which he would not only address the Soviet Union, but other repressive states (e.g. apartheid in South Africa). John Paul not only embraced the largely secular language of universal rights in his homilies, encyclicals, and public addresses, but he specifically rooted himself in the United Nations’ Universal Declaration of Human Rights, declaring it “a true milestone on the path of humanity’s moral progress” (AAS 71 1979: 1147–1148) and “one of the highest expressions of the human conscience of our time” (L’Osservatore Romano 1995: 8.). In this way, he used the language of human rights to mobilize people against their governments and advocate for Western-style democracy and a market-based economy. The Pope’s project helped universalize a specifically Western model of civil-society organization by connecting it to international human rights. At the time that the famous photo was taken on the tarmac in Managua, Ernesto Cardenal was involved in a civil-society project that was alarming to John Paul II and his closest advisers in the Vatican. Nicaragua had launched its own solidarity movement, but rather than mobilizing people to stand shoulder-to-shoulder against their government in the name of civil and political rights as Solidarność was doing in Poland, the Nicaraguan solidaridad movement was mobilizing people to stand hand-in-hand with the Revolutionary Government to advance their social and economic rights. This form of civic participation was perhaps the most important expression of the Revolution’s ideals, as well as a pragmatic solution to the daily problems poor and middle-class Nicaraguans were encountering on the ground. For Catholic priests, like Ernesto Cardenal, his Jesuit priest brother and Minister of Education, Fernando Cardenal, and Maryknoll priest and Foreign Minister, Miguel d’Escoto, solidaridad was an expression of faith. As liberation theologians, they also saw their work a part of the “fight for human rights” (Boff and Boff 1999: 7). These three priests, along with dozens of other ordained religious, helped develop Nicaragua’s popular (i.e. “of the people”) Church by organizing parishioners into service and self-help groups, which became instrumental in supporting the Revolution. Their interpretation of Christ as a fighter for social change and their belief that the Church must be organized around a “preferential option for the poor” (Guiterrez 1973) fit well with the Sandinista Front’s emancipation of the people from a repressive regime and their plans to promote a more just socioeconomic order. When the Cardenals and d’Escoto learned about the Pope’s concern that Nicaragua’s “popular church” was developing into a “parallel church,” they responded with an open letter stating: “We make ourselves Christian by acting as Christians,” and “The Gospels are going in one direction, the Pope in another” Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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(quoted in Sabia 1997: 190). Simply put, they saw the Sandinista Revolution as God’s work, and thus did not differentiate between the post-Revolution government and the Church – civil society or the state. In this chapter, I build upon my argument that human-rights discourse increasingly promotes a narrow conception of civil society as rights-advocacy organizations that monitor the state. As a result of a singular template for civil society, grassroots associations that promote a different form of civic participation become targets for change by multilateral agencies, international advocates, global networks, and transnational donors and, in some cases, local actors who have embraced international norms. As a result, local groups often have to grapple with this new organizational model and either accept, reject, or use it to forge something new. As I have argued in Chapter 1, the CRPD has taken this phenomenon to a new level by including specific articles that define civil society representing persons with disabilities as DPOs advising their governments about legislation and policy and monitoring the state’s implementation of their rights according to international law. Nicaragua presents a useful case study because its tradition of solidaridad organizations presents clearly identifiable norms of civic participation that represent an opposing pole in the tug of war that grassroots disability associations experience once they are introduced to the CRPD and incorporated into the international disability-rights movement. In the sections below, I explain where solidaridad comes from as an “institutional logic” – set of beliefs, formal and informal rules, practices, and other norms – that promote a specific organizational model in Nicaragua that influences grassroots associations today. To do so, I provide a short history of Nicaragua from the beginning of the twentieth century up through the Sandinista Revolution and Revolutionary Period (1979–1990) and its aftermath. Throughout this history, I focus on the way in which it promoted civil-society organizations oriented toward self-help and cooperation as a means of advancing community interests and national development. I then go on to explain why neo-institutional theory and methods, including recent micro-sociological critiques of institutionalism, are useful for understanding the practices of grassroots civil-society organizations in Nicaragua in this age of international human rights. Finally, I present the logics of solidaridad and disability-rights advocacy as competing in Segovia with local grassroots disability associations as the sites where persons with disabilities themselves must come to terms with conflicting norms over their identities as members of DPOs and participants in local civil society.

sandino and somoza: revolutionary and dictator The 1979 Sandinista Revolution was decades in the making. It was also built upon a belief that everyday Nicaraguans could accomplish the impossible when they joined hands and worked together. The first great accomplishment of poder del pueblo, or Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

Sandino and Somoza: Revolutionary and Dictator

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“power of the people,” took place a half-century earlier under the leadership of Augusto Sandino, the namesake of the Sandinista Front. Augusto César Sandino was a guerrilla leader who managed to drive the United States out of one of the smallest and poorest countries in the Western Hemisphere. During the 1920s and 1930s, Sandino organized a band of unemployed miners, rural subsistence farmers, and others and took on the US. Marines with little more than machetes and ancient muskets in their hands. Over several years, Sandino and his men managed to wear the Marines down, eventually leading to the end of more than two decades of American military occupation of Nicaragua. Sandino was born in 1895 outside of Masaya, Nicaragua, the illegitimate son of an indigenous servant and a wealthy landowner. As a young man, Sandino left Nicaragua and traveled throughout Central America and Mexico, originally in search of work, which he found in the oil industry, and then later on as a fighter in a variety of popular movements that rose up throughout the region in the aftermath of the Mexican Revolution. He returned to Nicaragua in 1927, having been radicalized by anarchism, communism, indigenismo (indigenous nationalism), and other anti-imperialist ideologies with the intention of fighting for Nicaraguan independence from the USA Upon his return, Sandino and his quickly organized army joined an insurgency against the US. puppet regime of Adolfo Díaz. The insurgency ultimately failed in the face of US. Marines and the US.-supported Nicaraguan National Guard. Sandino and his men, however, refused to lay down their arms as other supporters of the coup had, and instead retreated into the mountains in the north. For several years, Sandino and his guerilla army organized raids on US. Marine and National Guard outposts throughout the region and targeted US.-owned gold mines, railways, and other vital economic interests. Despite their best efforts, neither the Marines nor the National Guard were able to capture Sandino and his men, in part because the rural campesinos were willing to feed, hide, and support them. By 1933, the USA was both embarrassed by their inability to defeat Sandino and embroiled in the Great Depression. President Hoover decided to allow Nicaragua to have elections and then pull American troops out once a “friendly” regime was in place. Once the last of the Marines had left, Sandino came to Managua to begin peace talks with Nicaragua’s newly inaugurated President Juan Bautista Sacasa. One of Sandino’s demands was that Sacasa dissolve the National Guard, which continued to be trained and financially supported by the USA. The Director of the National Guard – “Tacho” Somoza – heard about this request and feared that he would lose his position of power if Sacasa agreed. Not willing to risk his loss of influence, Somoza took matters into his own hands and had National Guard troops intercept and murder Sandino as he was making his way home from a round of negotiations at the Presidential Palace in Managua. Shortly thereafter, the National Guard defeated what remained of Sandino’s army and then went on to instigate his own coup against Sacasa and seize power, thus establishing the Somoza dictatorship. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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From that point forward, the Somoza dynasty not only controlled the presidency, but also retained direct control over the National Guard, which continued to be supported by the USA, but increasingly operated as Somoza’s personal army, not only quelling resistance but also protecting the Somoza family’s growing list of personal business ventures. Tacho Somoza ensured the Guard’s personal loyalty by placing his own children in key leadership positions within it and by providing generous salaries and social benefits to Guard members and their families. Perhaps even more important in terms of assuring loyalty, however, was the Somoza dictatorship’s willing participation in the Guard’s mafia-like behavior of collecting kickbacks, bribes, and other favors from the public, which ensured that Guardsmen could become relatively wealthy but also separated from the broader community. Much of this money made its way back to the Somoza family itself, which had developed a taste for a luxurious lifestyle that few, if any, other Nicaraguans could even dream of.

sandino reincarnated in the sandinista front In the face of the Somoza family’s rise, Sandino’s legend became all the more important. Under the rule of Tacho Somoza and his first son, Luis, the dictatorship certainly demanded loyalty and visited violence upon defiant citizens, but it also tried to engender a modicum of popular support from the people. For example, rather than ban opposition political parties all together, the Somozas instead attempted to co-opt them; rather than completely ignoring Nicaragua’s desperate poverty, the Somoza regime used international loans and foreign aid to lay down new highways and electrify underdeveloped barrios in the city; and rather than trying to corner the market or suppress the development of new industries, they helped spread the wealth to friends, family members, and political allies. As a result of the dictatorship’s policies and practices, the majority of Nicaragua’s population practiced a policy of keeping their mouths shut in the hope that they could stay out of harm’s way. A small, but growing proportion of youth, however, became increasingly intolerant of the Somozas’ abuses and began to engage in a clandestine fight for Nicaraguan independence. Over the years, what began as a student study group in the early 1960s would grow to become a full-scale army by the end of the 1970s. From the beginning, the Frente Sandinista de Liberación Nacional (Sandinista National Liberation Front) was based on an eclectic ideology that would later inform the Revolutionary Government and shape Nicaragua’s civil society through to today. Carlos Fonseca and a handful of other university students founded the Sandinista Front. Each of them had been experimenting with leftist politics and were interested in meeting to discuss if Marxism and Leninism could provide a path forward for Nicaragua. By chance, Fonseca decided that their reading group should include a Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

Sandino Reincarnated in the Sandinista Front

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few books about Sandino that he had found on his father’s bookshelf. At that time, on the left, Nicaraguan socialists and communists had rejected Sandino as too much of a nationalist. On the right, Sandino had been reduced to “just a murmur” because the Somoza regime had done its best to erase him from Nicaragua’s official history (Fonseca, quoted in Brentlinger 1995: 92). As the young men read about Sandino together, however, they not only began to recognize him for the hero that he was, but also began to believe that if change were to come to Nicaragua, it would be by bringing people together around their common tradition (i.e. Sandino) rather than trying to rally the populace around some orthodoxy imported from abroad (i.e. Marxism). In the end, Sandinismo became an open and accommodating philosophy that incorporated Karl Marx, “Che” Guevara, Camilo Torres (a priest who joined Colombia’s armed struggle), and, most importantly, Augusto Sandino (Brentlinger 1995: 94). It was a unique belief that represented a “blend of nationalism, pragmatic Marxism, and Catholic humanism” (Wright 1995: 169). As a result, Sandinismo rejected the idea that Nicaragua needed a strong, centralized state like the Soviet Union or Cuba, and instead celebrated the notion that great things could be accomplished through everyday people working together in solidaridad, with Sandino’s peasant army as a guiding example. During its early history, the Sandinista Front and the independence movement remained relatively small, unknown to the general population, and circumscribed to a group of radicalized youth willing to put their careers aside and go live and train for combat in the mountains as Sandino had done. Despite passion, commitment, and a willingness to use violence to advance their cause, the Sandinistas remained a fringe movement barely able to put together more than a few dozen men armed with hunting rifles, which proved all but useless in their intermittent assaults on National Guard troops. In 1964, knowledge about the nascent movement broadened when Fonseca was captured and publicly put on trial, perhaps to serve as a warning to other would-be revolutionaries. Instead, Fonseca used the courtroom to broadcast his views regarding the dictatorship and became a cause célèbre of university students and the larger public that was following newspaper coverage of the proceedings. Fonseca was ultimately found guilty and imprisoned for two years, but the damage to Somoza had been done; the Sandinista Front had entered the popular imagination. At its core, however, it still remained a small band of freedom fighters in a country where most people were unwilling to rebel. In 1967, their small guerilla army, planning to launch offensive operations, were detected by the National Guard in the northern Pancasán mountains and almost entirely wiped out. Following that defeat, however, the Sandinista Front’s fortunes began to change when Tacho’s youngest son, Anastasio “Tachito” Somoza, ascended to the presidency. While his father and older brother had done very little to help Nicaragua’s general population, beyond using international monies for a handful of infrastructure projects, Tachito Somoza seemed intent to go beyond mere neglect and instead

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actively tried to squeeze every last cordoba from his citizens. Tachito focused his energies on pushing the peasantry off their land so that he could expand his cattle ranches, rice farms, and coffee plantations. At the height of his power, Tachito personally owned an estimated 20 percent of Nicaragua’s arable land. He also made significant inroads into Nicaragua’s industrial and service sectors, dabbling in everything from manufacturing cement and processing tobacco through to importing cars and selling real estate. Many of these private investments were backed with funds taken from the public treasury, and the workers were paid a pittance under government policies designed to suppress wages and crack down on unionization. As a result of Tachito’s priorities, Nicaragua spent virtually nothing on such things as public health and sanitation, which resulted in the lowest life expectancy in Central America and one-fifth of all deaths being attributable to preventable, water-borne, intestinal disease because the majority of the population did not have access to potable water. In response to a question regarding Nicaragua’s notoriously low levels of literacy, Tachito famously responded “I don’t want an educated population; I want oxen” (Holloway 2010: 409). Indeed, just 49 percent of Nicaraguans and just 25 percent of those in rural areas could read and write under his rule. While the peasantry and urban poor suffered most under Tachito’s policies and personal ambitions, wealthy business owners also began to suffer. In addition to using public monies to finance his private investments, Tachito also began pushing through legislation that granted his businesses legal monopolies, which guaranteed that he would never have to face competition (Booth 1985: 80–81). If someone from an independent enterprise refused to sell out or cooperate with his plans, they risked getting a knock at their door, or much worse, the National Guard. Festering resentment of the Somoza regime, however, finally moved into high gear in 1972, when a massive earthquake hit Managua and left thousands dead and two-thirds of the city’s residents homeless. The international community mobilized in response to this humanitarian disaster, but Tachito used it as an opportunity to declare martial law and demand that he personally be put in charge of distributing all public and private foreign aid. The result was that donated funds were used to purchase cement and land for rebuilding at inflated prices from his personally owned cement factory and real-estate holdings and whatever was left over was creamed off the top or directly plundered. In the end, most of Managua remained in ruins, while Tachito Somoza became the wealthiest man in Central America. The Somoza family’s net worth grew to an estimated $400 million by 1974, a year when Nicaragua’s GDP was less than USD$ 1.5 Billion (Booth 1985: 81). Tachito’s biggest accomplishment, however, was to come. In the years that followed, he was able to drive groups as diverse as university students, Catholic priests, aspiring capitalists, landless peasants, and right-wing politicians together to support violent revolution against him. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

Civil Society Puts the Regime on Shaky Ground

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civil society puts the regime on shaky ground In the aftermath of the earthquake, Nicaragua’s nascent civil society began to mobilize in ways it had never done before, creating a massive push of organizing that would eventually become the Revolution’s broad-based, multiclass coalition (Everingham 1996). In this way, the Sandinista Front moved from being a fringe movement to the leader of a revolutionary coalition that brought together entities as diverse as the Catholic Church and Nicaragua’s Chamber of Commerce. It also promoted solidaridad organizations as the key to Nicaragua’s future. With devastation wrought on the city and continuing distress in the countryside, the Catholic Church became even more active as parishioners began to turn to their priests for help, and traditional Catholic charities were overrun. Catholic priests, nuns, and laypersons began organizing the rural and urban poor into Christian Base Communities. These small groups bridged activities as diverse as Bible study through to community-development projects. Soon Base Communities were doing everything from digging wells and reconstructing homes through to running kindergartens and operating health clinics. At the same time, local religious leaders, such as the Cardenal brothers, began openly supporting the Sandinista Front and calling for an end to the Somoza regime. Homilies were used to portray Sandino as a modern-day Moses who died trying to free his people from a modern-day Pharaoh (i.e. Somoza) (Lancaster 1988: 58). These liberation theologians also increasingly began integrating Marxist-influenced interpretations of Biblical readings into their sermons and began to argue that collectivism, which was also being promoted by the Sandinista Front, was part and parcel of Christian praxis. As a result, the National Guard was sent out after outspoken religious leaders, many of whom had to leave Nicaragua in exile or begin to live underground, protected by their communities. In the rural areas, peasant farmers, including those participating in Base Communities, also began organizing their own self-help cooperatives, their lives becoming even more precarious as National Guard troops continued to move them off of their land, and they saw their day-labor wages drop under Somoza’s policies. In the face of a government seemingly intent upon destroying their livelihood, many realized the only way to sustain themselves would be by forming cooperatives where they could share labor, equipment, and land. This led to the formation of the Association of Rural Workers (Asociación de Trabajadores del Campo), which not only continued to assist campesinos to survive, but also began to organize with the Sandinista Front. The Front protected farmers, who in turn fed and hid Sandinista fighters operating in the countryside. As time went on, the Association of Rural Workers also supported Sandinista military campaigns by organizing farmworker strikes that disrupted the economy (Booth 1985: 83). The business community, including many who had been allies of Somoza in the hope that partnerships with him would help make them rich, also began to organize in opposition. In the words of one elite businessman at the time, “the private sector Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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was getting tired of Somoza taking control of everything he could get his hands on” (quoted in Everingham 1996: 114). In response to their members’ concerns, the Chamber of Commerce and Chamber of Industries united as the Superior Council of Private Initiative (Consejo Superior de la Iniciative Privadad) and began speaking out against government corruption. Simultaneously, several elite political leaders from both the right and left began to break away from parties that had cooperated with Somoza and organize in opposition. During the lead-up to the rigged 1974 elections, the newly formed opposition party adopted the slogan “There is no one to vote for” (no hay por quien votar) and organized a mass electoral abstention. In 1974, the final piece of the puzzle came into place when the Sandinista Front implemented a surprise strategy by raiding a house party hosted by the Minister of Agriculture and taking the guests hostage. Using the hostages as a bargaining chip, they demanded that Somoza release important Sandinistas who were being held captive by the National Guard. This operation had the effect of demonstrating to the country as a whole that the Sandinista Front was capable of pulling off sophisticated attacks. It also freed Daniel Ortega, a Sandinista Front leader, from prison, who then went on to become the Revolutionary Government’s leader. Ortega had used his prison time to develop a new strategy. He had realized that the Front would never be a successful revolutionary force if its support was limited to the rural and urban poor. Instead, he believed there was a “third way” whereby an alliance across the poor and middle classes could be forged, thus encouraging full participation of the Nicaraguan people in the revolution. As such, the Sandinista Front made it clear that they rejected the idea of a planned economy and single-party state, but instead envisioned a Nicaraguan future based upon political pluralism and a mixed economy. Thus, Ortega and the Terceristas (third way) were able to recruit Nicaraguan supermarket magnates, international bankers, right-wing politicians, and other disgruntled middle class and political and economic elites to their revolutionary cause. This greatly expanded their financial resources by tapping into the international networks through Nicaraguan businessmen (Booth 1985: 100–103).

organizing the people As the coalition came together, the Somoza regime began to erode. By the late 1970s, despite some important successes, such as killing Carlos Fonseca, the National Guard was actively losing ground. The Sandinista Front, which was receiving military aid from Cuba and financial aid from Nicaraguan elites, was now able to recruit and train hundreds of new, volunteer fighters. Villages in the countryside and neighborhoods in the city began establishing Sandinista Defense Committees, which did everything from organizing militias at home to collecting food and medicine for advancing Sandinista troops. Factory workers, farmers, and business owners contributed to the insurrection by organizing nationwide strikes. Cities, especially in the mountainous Nuevo Segovia region in the north, began to Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

Substituting Civil Society for the State

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rise up en masse. The National Guard pushed back and committed some of the worst atrocities of the war, such as sending tanks into residential neighborhoods or indiscriminately bombing communities from the air. The international community could no longer remain silent. Costa Rica, which had previously maintained a policy of neutrality, began allowing the Sandinista Front to set up military bases along their northern border and the USA, which had long seen Somoza as the key to Cuban and Soviet containment, ended its decadeslong policy of turning a blind eye to the worst of the regime’s abuses. In 1979, the Carter Administration began to call for Somoza to step down with the hope that the USA could then facilitate a transition to a new (non-Sandinista) government (Booth 1985: 129–130). Tachito refused. Within months, the Sandinista Front began to ride a wave of uprisings in Managua’s barrios, and Somoza could finally see the writing on the wall. In July, 1979, as the entire capital mobilized into open rebellion, Tachito literally fled from his bunker (with suitcases reportedly filled with money) to a private airport. As his plane lifted off Nicaragua’s soil on its way to Miami, Tachito Somoza was the richest man in Central America, yet the country over which he and his family had ruled was the second poorest in the Western Hemisphere and one of the least developed in the world (Lake 1989). Tachito left behind just $3.5 million in government coffers and a foreign debt of close to half a billion, or $1,600 per capita in a country where twothirds of the population lived on less than a dollar a day (Sagall 1995: 119). As the Sandinistas proclaimed victory in the Somoza dynasty’s wake, the fact that they were no longer fighting against the government, but must govern, began to settle in. In her memoir The Country Under My Skin, poet and Sandinista leader Giocanda Belli describes this realization in the early days of the post-revolution government: We had taken over. The experience evoked images of the Allied troops arriving at towns abandoned by the Nazis at the end of the Second World War. That was the kind of joy the people greeted us with, and that was the power void in which we found ourselves: a clean-slate situation. The state had completely dissolved. There were no courts, no police, no army, no government ministries. Just abandoned offices, deserted military bunkers. It was an odd sensation to have been subversive guerillas and fugitives only a day earlier, and now, suddenly—as young as we were, no less—to find ourselves in a city [Managua] deserted by the ancient regime, conscious that from then on, everything was up to us. (Belli 2002: 49)

substituting civil society for the state Leaders of the revolutionary coalition hastily assembled the Governing Council or “Junta” of National Reconciliation (Junta de Gobierno de Reconstrucción Nacional) Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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in the immediate aftermath of Somoza’s fall. Determined to maintain broad-based support, they chose representatives from across the political and economic spectrum to ensure both the left and the right, rich and poor, would be invested in governing together. Having surveyed the challenge of rebuilding a country that had been laid waste by years of neglect, exploitation, and insurrection, the leaders of the junta began to understand their new challenge – governing without a state. Junta member Alfonso Robelo, who was a center-right political leader and former head of Nicaragua’s Chamber of Commerce, issued a new call to arms during a celebration of the Sandinista victory in Managua by stating: “The real revolution is still ahead. It is going to be hard, but that is nothing to the people of Sandino.” With no experience and no budget, but an immense belief in the power of the people, Nicaragua came upon a novel solution: mobilizing the people themselves to carry out traditional functions of the state. The Sandinista Defense Committees were transformed into Civil Defense Committees, which were neighborhood-level voluntary organizations that did everything from collecting the trash to distributing food aid (Serra 1985). The Sandinista Youth began organizing voluntary “brigades” of young people, who rebuilt schools and repaired damaged roads. Peasant farmers established cooperatives that rehabilitated farmland and distributed seed and equipment (Kroeker 1996). Small businesses created rotating loan funds and import–export cooperatives to help them prosper after years of neglect. In all these ways, state functions ranging from sanitation and infrastructure to agricultural extension and business development were replaced by grassroots civil-society organizations that mobilized the citizenry to participate in their own governance, often by taking whatever meager resources the ruling junta could provide and combining it with their own resources, including volunteer labor, to ensure local and national needs could be met. Simultaneously, the Nicaraguan Catholic Church accelerated its own organizing work with Catholic Base Communities by encouraging all of the faithful to participate in rebuilding the nation. Through the language of the popular Church, solidaridad organizations were raised up from being a practical response to necessity to the faithful’s response to spiritual calling. Ernesto Cardenal’s Misa Campesino (peasant mass), which he had developed while living in hiding from the National Guard, promoted the idea that good Christians were those who lived in solidaridad. In this new version of the Catholic mass, Cardenal had replaced the traditional calls and responses, such as “The Lord be with you” and “Also with you,” with “Identify yourself with us, O Lord” and “Show us your solidarity” (Rushdie 2011: 61). In this way, the new Nicaragua built upon the legacy of the broad-based revolutionary coalition that brought the new order to power by pursuing a homegrown vision of “democratic socialism” (Brentlinger 1995; Ruchwager 1987) that centered on “participatory forms of democracy” (Vanden and Prevost 1993: 68). Participatory democracy was not just having a voice in governance, such as casting a vote, but coming together in solidaridad with others and getting your hands dirty for the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

Substituting Civil Society for the State

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common good. What this meant in practice was a that small and relatively weak government was being supplemented by a strong and large civil society composed of organizaciones de masas or “mass” or “popular” organizations” (Anderson and Dodd 2005; Babb 2001). A simple example of how the government worked with civil society to carry out the most mundane bureaucratic tasks is the 1979 census. The state had no capacity to survey the country, yet needed the information desperately in order to set priorities. As a result, in October 1979 the junta called upon civil-society organizations to create census brigades made up of volunteer “students, parents, teachers, labour union and citizens’ association members, army personnel and peasants” (Hanemann 2005: 3), who were then trained and sent out to every corner of the country collecting data. In this way, the new governing coalition was able to cull the information it needed to set social and economic goals at a negligible cost. Census taking also had the effect of promoting solidaridad across the country as volunteer census takers from one community developed empathy when learning about the living conditions of people from another community. Civic participation became defined for Nicaraguans as being active members of grassroots self-help and social-support groups that promoted both local and national reconstruction and development. Solidaridad encapsulated the values and practice of working together with others to carry out these important tasks. In fact, the norm was so prevalent across the population that in the first year of the Revolutionary Period (1979–1990) more than half the population belonged to at least one mass organization and many had multiple memberships (Ruchwager 1987). Community Defense Councils counted more than 500,000 – one-sixth of the population – among their members (Serra 1991) and hundreds of thousands more belonged to Catholic Base Communities, agricultural and business cooperatives, trade unions, youth groups, women’s groups, and, eventually, disabled persons’ organizations. At this time, the new government institutionalized a political role for civil society by creating a National Assembly composed of mass organizations rather than districtbound, elected representatives (Lobel 1987; see also Ruchwager 1997; Vanden and Prevost 1993). This meant that through mass associations, members were able to propose, vote on, and, most importantly, implement legislation. Thus, for example, the elected leaders of civil-society organizations might propose a new law expanding access to paved roads and then immediately turn around and mobilize their members to voluntarily pour the concrete. While the nascent Ministry of Transport and Infrastructure might play a role by sending out a civil engineer or scraping together enough cement, it was the people, not the state, that made these new laws and rights a living reality. The most celebrated example of Nicaragua’s participatory democracy was the role mass organizations played in promoting literacy. Under the Somoza regime, basic education was not recognized as either a human right or an economic necessity. The new National Assembly, however, saw literacy as instrumental for building a Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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democratic and developed Nicaragua. To no surprise, the October 1979 census revealed a national illiteracy rate of 50.3 percent (Hanemann 2005). Upon learning this, the Ministry of Education set basic literacy as its top priority, but did not have the means to address it using the existing school system, especially in rural areas where illiteracy rates were more than 75 percent. So, just eight months after the revolution, Fr. Fernando Cardenal, the Minister of Education, initiated the Cruzada Nacional de Alfabetizacion (National Literacy Crusade) to mobilize mass organizations to educate the populace. Through student organizations, labor unions, Churches, and an assemblage of more than twenty different mass organizations, an estimated 95,000 volunteers were mobilized, trained, and sent out across the country to work in the poorest barrios and remotest villages. Within five months the illiteracy rate dropped by 37 percent and over 400,000 Nicaraguans were able to read for the first time. Literacy brigadistas or “promoters” often lived for weeks in rural areas with no stipend or pay, but were instead fed, sheltered, and cared for by peasant farmers grateful for their help. Nicaragua caught the attention of the world, including garnering the UNESCO literacy award for this innovative work (Arnove 1981; Brandt 1989; Hirshon 1984) and the power of solidaridad entered the national psyche even deeper than before. In the end, one-fifth of Nicaragua’s population directly participated, either as student or teacher, in the Crusade, which lasted five months, yet the Ministry of Education spent just $12 million (Hanemann 2005). Fernando Cardenal’s assessment of the initiative encapsulates the civic spirit of the time: “The crusade is not a story of complicated techniques or complex cost-benefit analysis, It is a story of people and the extraordinary potential for liberation and creation that exists within nations” (quoted in Miller 1985: 204). The Literacy Crusade and dozens of other similar “crusades” promoting health, development, and even culture (i.e. music, poetry, and folklore) became emblematic of Nicaraguan identity and a part of people’s daily experience (Brentlinger 1995; Hanemann 2005). They also defined citizenship in Nicaragua as something more than being a holder of rights, but also being a person willing to serve (Meyers 2013). Solidaridad organizations were so numerous, however, that everyone willing, no matter their level of wealth or education, could easily participate and benefit. Giocanda Belli, quoted above, talks about the euphoria this brief period after the Revolution brought her and many others as the time when she “discovered the joy that comes from surrendering the ‘I’ and embracing the ‘we’” (Belli 2003: xi).

the end of revolution, the continuation of solidaridad The great “we” of Nicaragua, however, almost proved short-lived. The first blow came through intervention from abroad and the second blow came from the loss of equality within Nicaragua’s ruling coalition. These two issues, while they weakened Nicaragua overall, only served to strengthen the role of self-help organizations and Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

The End of Revolution, the Continuation of Solidardad

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people’s commitment to solidaridad. Initially, mass organizations became an even more important means in the “struggle for economic survival” (Vanden and Prevost 1993: 66) as Nicaragua was cut off from the world. Later, self-help organizations sought to detach themselves from the politics of the Sandinista Front in pursuit of commonly agreed goals. In short, the material deprivation and political factions that developed during the 1980s did not erode the place of grassroots associations or solidaridad as a centerpiece within Nicaragua’s civic culture, but instead served as a foundation for its continuing development up to today. Soon after the Junta of National Reconciliation took power, Ronald Reagan was elected President of the United States, in part for his promises to take a tougher stance against communism. Reagan, the Great Communicator, rhetorically transformed Nicaragua from one of the least populous and most underdeveloped countries in Latin America into an existential threat to the USA. He described the beleaguered country as a “dagger pointed at the heart of Texas,” which could soon march the Sandinista Army up through Central America and Mexico to launch an invasion of the USA at the behest of the Soviet Union or Cuba (Chomsky 2003: 96). As fanciful as Reagan’s characterization of Nicaragua may seem, he was determined to back up his words with the weight of war. Once in office, the Reagan Administration immediately began using the CIA to instigate a counterinsurgency against the Sandinista-led government in Nicaragua by funding contra-revolucionarios (“Contras”), who were former members of Somoza’s National Guard now living in Honduras (Kinzer 2007: 136–148). Despite the US Congress shortly thereafter curtailing the White House’s power to provide them military aid, labeling the Contras a terrorist organization because of their attacks on civilian populations, the Reagan policy continued “off the books” throughout the 1980s and only ended with the uncovering of the Iran-Contra Affair. Less controversially, the USA undermined a package of development aid Nicaragua was negotiating with the World Bank and then used its political muscle to pressure US allies into participating in an economic blockade. As a result, Nicaraguan farmers were no longer able to export cash crops for needed income and the Nicaraguan government was unable to buy grain and other commodities essential for ensuring sufficient food supplies (Biekart 1999: 182–193). In the face of Contra raids and wildly fluctuating food prices, Daniel Ortega sought to centralize power. The architect of the Sandinista Front’s “third way,” or Terceristas, policy, now began to argue that there was only one way and, as the representative of the Sandinista Party, he needed to lead it. Quickly thereafter, the Junta of National Reconciliation began to break apart as representatives of business interests and the political right, such as Robelo, resigned. Ortega went on to argue that the Sandinista National Directorate needed to “set the rules of the game” by nationalizing key industries, instituting price controls, and conscripting the populace in the army in order to defeat this new round of American “imperial aggression” (United Press International 1981). Pockets of farmers, business owners, and others Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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soon became disillusioned with the Sandinistas as they saw their profits fall and freedoms curtailed. Eventually, the Sandinista Front sought to subordinate mass organizations themselves to their wartime goals, including asking them to support the militias and implement unpopular economic plans. At that same time, international organizations began to pressure Nicaragua to reform its National Assembly, resulting with mass organizations losing their voice as their seats were turned over to political-party candidates representing geographic districts rather than national civilsociety associations (Vilas 1986).

civil society today Solidaridad has continued to be a basic building block of associational life in Nicaragua. While the idealism of the Revolution is now in the past and both the Sandinista Front and the popular Catholic Church must compete with opposition political parties and other denominations (i.e. Evangelicals, etc.) for members and churchgoers, the experiences leading up to and just after the Revolution, almost forty years ago, still influence norms of civic participation in Nicaragua today. Solidaridad represents a set of expectations – a model – for how civil-society organizations in Nicaragua should look and act. The most important aspect of the model is that the members take responsibility for solving problems themselves rather than placing that responsibility on others. This is a source of great pride and a testament to their belief in their own power – the power of ordinary people. Within popular mythology, Nicaraguans have twice thwarted the world’s greatest imperial power, made enormous gains in education and health, and so on. The shadow of Sandino stands tall and the message of the National Literacy Crusade could not be clearer. The most obvious way that the history of the Revolution continues to influence Nicaragua’s civil society today is through old organizations that were founded during that period that continue to operate today, or through new organizations that were founded by former members or participants of mass organizations and other initiatives. First and foremost, the Sandinista Party continues to be popular and Daniel Ortega, who has had a resurgence in recent years, including being elected president in 2007 and then again in 2011 after nearly twenty years out of office, framed his Presidential campaign as an effort to “finish the unfinished revolution” (Morris 2010). The values of solidaridad were on practically every page of the 2011 Compana Solidaria, the Sandinista Party’s official platform, including slogans such as “Unidad por el Bien Común” (United for the Common Good) and “con todo y por el bien de todos!” (with everyone and for the good of everyone). Since elected, rejuvenating mass organizations in order to address Nicaragua’s many needs has been one of the Ortega administration’s most important goals. The revolutionary experience has also been influential on civil society outside of the Sandinista Front and beyond mass organizations founded during that period. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

Civil Society Today

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For example, a 2005 UNESCO study looking at the long-term impact of the National Literacy Crusade found that, twenty years later, both people who volunteered as brigadistas and the recipients of the literacy classes continue to see it as one of the most important experiences in their lives. More importantly, the report found that many of those involved in the “previous literacy policy [i.e. Crusade] established NGOs” in the 1990s and early 2000s (Hanemann 2005: 11). What this means is that what was learned during the Crusade is serving as a template for new organizations today. In a different case, Mendez (2005) found that a group of women who founded an organization for women working in the Free Trade Zone in the 1990s framed their motivation for doing so in terms of solidaridad, even though the impetus for establishing the organization itself was in response to their dissatisfaction with a Sandinista-sponsored mass organization. Mendez quotes one of the leaders of the Nicaraguan Working and Unemployed Women’s Movement as stating: “The FSLN [Sandinista Front] taught me to be very much in solidarity [solidaridad], very critical and responsible. . . It taught us [all] to be revolutionaries in the integral sense of the word, not only like from our mouth outwards, but, let’s say, revolutionary on the inside, right?” (25). The interviewee then went on to explain that it was solidaridad that she and other founding members drew upon in the face of gender inequality and machismo within the Sandinista Workers’ Central (SWC). While the women rejected the SWC for ignoring their problems, they also modeled themselves on it and the more general civic values of the Revolution to found their own grassroots association to operate day care centers, vocational-training workshops, and other services for their working women members. Mendez concludes: “The women of [the new organization] see and talk about themselves in this way to portray the work that they carried out within the popular [mass] organizations of the Sandinista National Liberation Front (FSLN), and they see themselves continuing this kind of ‘grassroots’ work with and as mujeres de base (grassroots women) in the autonomous, women-only space of [their organization]” (6). The history of grassroots disability associations in Nicaragua also includes groups founded by people inspired by the organizing efforts that took place during and immediately after the Sandinista Revolution. Los Pipitos, for example, was founded by Omar Cabezas, whose exploits as a Sandinista guerilla army commander were made famous in Fire on the Mountain (1985). In the 1980s, when he was the Deputy Interior Minister in the Sandinista-led government, he and his wife began Los Pipitos after they had given birth to twin daughters with Down syndrome. Realizing that they, and many other parents of children, with disabilities needed support, they founded Los Pipitos as a self-help parents’ network with independent chapters throughout the country (including Segovia), where parents could teach one another rehabilitation or set up their own day care centers. The Organization of Disabled Revolutionaries similarly began in the 1980s as a self-help organization. As Sandinista soldiers returned home from the front with permanent injuries, the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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network began so they could assist one another with their reentry into civilian life (Bruun 1995). Soon thereafter, independent chapters, such as that in Segovia, were implementing a variety of projects, such as vocational rehabilitation and wheelchair manufacture and repair. The list of disabled persons’ associations rooted in the Revolution goes on to include the national Nicaraguan Association of the Deaf (Polich 2005), the Segovia-based Association of the Blind, and many other local associations of persons with disabilities. The link between grassroots associations and solidaridad and other Revolutionary values goes beyond the histories of specific organizations. Instead, they have become universal norms that guide basic interactions across Nicaragua’s civic life. In a study of social capital and democratization, Anderson (2010) argues that Nicaragua’s history has fostered strong horizontal ties, or “bridging social capital,” across its citizenry (13) that continue to be present in daily life. During the Revolutionary Period, organizing efforts aided “the creation of cooperation and mutual support around a set of revolutionary ideas that transferred itself to the grassroots level, where it fostered the involvement and initiative that gave the revolution substance” (39). The value of mutual support is also reinforced by Nicaragua’s continued poverty. Nicaragua continues to rank as either the second or third poorest country in the Western Hemisphere in terms of GDP per capita, and the government, consequently, continues to lack capacity. As such, grassroots associations have continued to address people’s material needs and have continued to leverage the government’s meager resources by adding their own. In fact, in a testament to the importance of civil society, Nicaragua continues to outrank many of its neighbors on the Human Development Index, which includes basic measures for health and education, despite its economic underdevelopment. As such, grassroots associations continue to represent “the best prospects for confronting the nation’s need for economic and social justice” (Babb 2001: 10). The history of the Sandinista Revolution has continued to influence daily life in Nicaragua over several decades. It has produced a context-specific model for civilsociety organizations that defines the meaning of civic participation for thousands of citizens and guides the behavior of the grassroots associations that represent them. Their first characteristic is self-help. What this means in practice is that when people join civil-society organizations, they come ready to share their knowledge, labor, and material resources and expect others to do the same. They join groups because they think they have something to offer, but they also expect that there is something that they will receive. Benefits may be immediate and direct, such as having access to a rotating loan fund or educational opportunity, or distant and indirect, such as establishing a network of people they can rely on in the case of an unforeseen emergency or being able to live in a community that voluntary efforts have improved. Participation in organizations as a contributor can also take on the form of “paying it forward,” where people recognize that someone has helped them so they want to help others, in the belief that “what goes around, comes around.” Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

Rehabilitating Segovia’s DPOs With Rights

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The second major characteristic of solidaridad organizations is mutual cooperation, including with the state. Civil-society organizations in Nicaragua would rather stand together than apart. The state is not something to oppose, but a potential partner to support and benefit from. There is no clear separation between where the responsibilities of the state end and the duties of civil society begins. Instead, government and grassroots associations see themselves as “in it together,” with each putting something on the table in an effort to solve Nicaragua’s problems and promote its future. These norms of self-help and cooperation are the essence of solidaridad. They are the guiding principles of civil-society organizations in Nicaragua, a source of pride throughout the community, and proof of “poder del pueblo“ – “power of the people.” Self-help and cooperation are also the hallmarks of an organizational model that is incomprehensible to many outsiders who see civil society’s job as watchdog of the state – groups that demand new laws and hold the government accountable for existing ones. As a result, Westerners looking at Nicaraguan civil society may dismiss it with something akin to Pope John Paul’s wagging finger. More likely, they eschew the finger and instead go about “fixing” local civil society with a seemingly endless stream of capacity-building activities.

rehabilitating segovia’s dpos with rights As the Catholic Church keeps tabs on its many priests, the international disabilityrights community keeps tabs on its local DPOs. One set of actors is held accountable to the Bible, the other to the CRPD. Articles 4, 29, and 33 set out an orthodoxy of acceptable DPO practices. Grassroots disability associations should be “actively involved” and “closely consulting” with their governments on the “development and implementation of legislation and policies” (Article 4.3); representing persons with disabilities within the “conduct of public affairs” (Article 29.b); and “participat[ing] and be[ing] fully involved in the [Convention’s] monitoring process” (Article 33.3). International disability-rights experts and advocates dropped into Segovia on a regular basis during my research for the precise purposes of evaluating and assessing how local grassroots disability associations were doing regarding their duties under the CRPD. Sometimes their conclusions regarding local DPOs’ success as disabilityrights advocates could be quite devastating. During the summer of 2009, for example, the Assistant Regional Director for the Central American field office for a European-based international disability NGO arrived in town to check up on Segovia’s CDIS. His organization had provided the local coalition members technical assistance in the form of human-rights workshops and seed money for CRPD advocacy. I caught up with the administrator toward the end of his two-day assessment of the organizations. I asked him how he thought the groups were doing. He was disappointed; the DPOs’ advocacy work was, in his view, a complete failure. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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“They’ve gotten nothing, not a thing,” he explained. His organization had provided money for the specific purpose of the local grassroots disability associations advocating for more publicly provided rehabilitation (CRPD Article 26 requires that “States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes”). I pointed out that many of the DPOs were already providing those services. Los Pipitos, for example, had several physical therapists working with parents and children. “That is not right,” he explained, “As a human right, rehabilitation is a government obligation,” not the responsibility of Los Pipitos or any other member of civil society. I pressed a little further and, nodding to the pot-holed street outside, asked if he really thought it was possible for the government to do many of those things right now. The government seemed to be struggling to get just about anything done. “They [the government] have the money, they just don’t want to spend it,” he answered. “And they don’t have to. No, because the people here, the disabled people won’t ask for it.” I asked for further explanation, which resulted in his declaration that “Nicaraguan people do not have a culture of rights!” He then went on with a long, illustrative story about how in his native France, if an electric company overcharged its customers, the French people would be in the streets and refusing to pay. In Nicaragua, however, according to my interviewee, people would pay the bill even if they knew they were being cheated. He ended the example in a mocking voice, saying “Oh, I am so poor, I can’t do anything.” His implication was that Nicaraguans with disabilities and their organizations had not succeeded at advocating for their right to rehabilitation because they were somehow helpless in the face of their own self-pity. More technical assistance was the proffered cure to the pathology projected upon Segovia’s DPOs. The organization the French administrator worked for and a handful of other international disability NGOs were constantly inviting the local DPOs to attend human-rights workshops and training. The explicit purpose of these workshops was to teach them a new way of doing things that aligned with the CRPD’s expectations for civil society. For example, I sat in on one such workshop in October, 2011. The training was entitled “Organizational Development for Directors,” and was intended for the leadership (board members, executive directors) of each of CDIS’s seven member organizations. The trainers were two Nicaraguans from Managua who had been trained by an international disability NGO that was funding workshops around the world as part of a “train the trainers” program promoting the CRPD. For five sweltering days, thirty members of Segovia’s various disability associations and I sat in a small conference room attached to a local motel. The trainers introduced us to a new PowerPoint presentation each day covering “Introduction to Political Advocacy,” “Laws for the Protection and Benefit of People from DPOs,” “The Methodology and Process for Political Advocacy,” and so on. Over and over again, we were taken through the CRPD with a lecture in the morning, small-group Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

One Vision, One Mission

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work in the early afternoon, and “reporting in” and drills on what we had learned that day, to ensure there was no question about what organizations were now supposed to do. There was special attention given to Article 33 on “National Implementation and Monitoring,” which included the admonition that we must not be afraid to report even the slightest violation, of which Segovia was apparently swimming – lack of inclusive education in schools, few curb cuts on the sidewalk, no public information in braille, etc. Political advocacy was defined throughout as “directed at institutions [government/public agencies]” and the overarching message of the training was that it was now our (CDIS’s) duty to hold the government accountable to the law. These sorts of capacity-building initiatives for grassroots disability associations around the world are for the precise purpose of enacting “a change in identity of the [DPO] and in its strategic direction” so that “they now actively aim to convey the rights-based approach to disability” (Van Veen, Revere, and Bungers 2013: 369). Solidaridad, obviously, is not the right rights-based approach. In the words of HI’s policy paper on capacity building for DPOs, “the CRPD represents a major step, it is a tool that can be effective and make a difference for persons with disabilities only if used and enacted. This calls for all stakeholders [i.e. DPOs] to play their role to make these rights a reality” (Geiser, Ziegler, and Zurmuhl 2011: 16, my emphasis).

one vision, one mission What is happening to organizations representing persons with disabilities in Segovia is not unique, but it does present a global phenomenon in high relief. Around the world, grassroots associations, especially in the Global South, are targeted for change. Since the early 1980s, Western political theorists, policymakers, and practitioners have sought to “promote one vision of civil society as the vision” (Howell and Pearce 2001: 11 [their emphasis]). It is no accident that I began this chapter with Pope John Paul II. His christening of the Solidarność movement in Poland is often pointed to by scholars as the moment when civil society was “rediscovered” as a concept (Oxhorn 2006: 59) and the Pope’s threats to excommunicate priests in Nicaragua was part of a global process to force diverse civil societies around the world to conform to the West’s singular vision. The international human-rights regime has been instrumental in carrying forth the West’s evangelizing mission to diverse civil societies around the world. The UN Office of the High Commissioner for Human Rights (OHCHR), for example, narrowly defines civil society as those actors that “give voice to the powerless” when they “scrutinize the implementation of human rights, report violations [of human rights abuses]. . .and campaign for the development of new human rights standards” (UN-OHCHR 2007: iii). Articles 4, 29, and 33 of the CRPD marks a new front in the battle to make all of the world’s civil-society organizations think and act the same. It has made the West’s narrow definition a part of international law. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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intersecting institutional logics and organizational fields The impact of the CRPD on Segovia’s DPOs highlights the ways in which the meaning and practice of civil society is being defined and redefined in grassroots associational life. By taking an ethnographic approach, I was able to get inside organizations to understand the way in which the CRPD’s civil-society mandate was being negotiated in daily, organizational life. The interactions between grassroots disability associations and members of the international disability-rights movement also provide ample supporting evidence for expanding neo-institutional approaches in organizational sociology theory, which I believe is essential for understanding organizational change at the intersection of civil-society organizations defined by solidaridad in local context and disability-rights advocacy in another. Neo-institutionalism is a theory of conformity that argues that the form and practice of organizations are defined by “institutional logics” that govern their field. Institutional logics are exogenous, “socially constructed, historical patterns of material practices, assumptions, values, beliefs, and rules” (Thornton and Ocasio 1999: 804) and “cultural rationales” (Haedicke and Hallett 2016) that shape what a related set of organizations look and act like. Institutions can be material or symbolic, formal or informal, and rewards or sanctions that guide organizational behavior. For example, institutions can range from harshly enforced laws through to general sentiments about what people ought to do. As a theory of homogenization, neo-institutionalism argues that organizations in a given field are “driven to incorporate the practices and procedures defined by prevailing rationalized concepts of organizational work” (Meyer and Rowan 1977: 340) that are found driven by organizations desire to be seen as “legitimate” because they look and act like other organizations, independent of the efficacy of those newly incorporated practices and procedures. At its heart, neo-institutionalism is a theory about form over function: organizations chase norms, not outcomes. It is a theory of “looking the part” or “dressing for success,” insomuch as organizations survive and often thrive by adopting broadly disseminated practices and procedures. Solidaridad and disability-rights advocacy represent two different institutional logics that compete with one another within Segovia’s grassroots disability associations (Meyers 2014c). Local people in Nicaragua expect Segovia’s associations, including its DPOs, to promote self-help and mutual cooperation. International human-rights advocates, however, expect grassroots civil-society organizations to stand up forcefully to their governments and demand that they follow law. As a theory of form over function, which (local solidaridad or global rights advocacy) set of expectations Segovia’s DPOs eventually adopt (or adapt), is the result of which peer group (local civil society or global disability movement) they feel they most belong to rather than whose logic produces the most concrete benefits for their members. From a neo-institutional point of view, organizations are Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

Intersecting Institutional Logics and Organizational Fields

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products and producers of socialization processes that push, pull, and pressure one another to embrace different organizational models. In Nicaragua, DPOs are a part of a vibrant local civil society that holds the history of Catholic Base Communities, mass organizations, the National Literacy Crusade in high esteem. Persons with disabilities want to join and take great pride when their organizations do the same. And other local organizations, whether they be civil society, business, or government, are more likely to partner or shower them with praise. In this way, the Revolution set the “rules of the game” by which local organizations continue to be expected to play. The CRPD, however, has introduced a new set of rules governing the behavior of DPOs, in this case around the world, which includes Nicaragua. The CRPD’s civil-society mandate assumes disabled persons’ organizations are ready and willing to fulfill their role as advisers on new disability-related laws and policies and monitors of rights. As such, UN agencies, international disability NGOs, and global DPO networks issue their own rewards and sanctions to promote these new organizational norms. Both or neither of these approaches need to be successful in addressing the concrete needs of persons with disabilities for Segovia’s DPOs to accept or reject them. It is instead based upon matters of organizational identity: to which group (local or global) do they ultimately identify with and, in turn, are included by. By looking at Segovia’s DPOs at this intersection between two competing institutional logics, I can push neo-institutional theory and method further. I can also expose a dynamic that should give the global disability-rights movement pause. My first critique is that normally neo-institutionalists theorize organizations as members of a single institutional field, whereas in lived reality, organizations belong to a multiplicity of fields and reference groups. For purposes of analysis, neo-institutionalists define a field as all organizations providing a “given product or service” (Scott and Meyer 1992: 129) and other “relevant actors” that range from regulators to consumer groups (DiMaggio and Powell 1991: 65). The educational field, for example, does not just include schools, but also parent–teacher associations, textbook publishers, alumni groups, local school boards, the Department of Education, and so forth. All respond to one another and all define the logic of “education.” When change is theorized, it is usually done across a field – the advent of US standards-based education (testing, measurement, etc.) in the 1990s through to its culmination in the No Child Left Behind Act in 2001. As neo-institutionalism would predict, the nail that sticks out gets pounded in. As standards-based education disseminates from a new idea to standard practice, it becomes increasingly hard for any organization within the field to promote education by any other system (even if they can prove they have better student outcomes). But in that example, there may be more than one hammer because schools do not belong to just one field. For example, parochial schools are also associated with the religious field and charter schools are often associated with the logic of consumer markets. Even public schools have one foot in the world of Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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education and another in social work. That means then that schools are responding to any number of actors, including those with competing norms. Thus, in order to understand the full curriculum of a Catholic school, I would argue that a researcher would need to understand both standards-based education and Catholic theology (or, simply, Catholic culture). The competing logics of solidaridad and rights advocacy make it clear that Nicaragua’s DPOs belong to two fields, not one. Yet, disability-rights advocates often claim all DPOs as their own and demand that local groups do not include any other set of activities. While disability-studies scholarship has become more adept at recognizing and respecting the ways in which gender, race, sexuality, and, more recently, wealth, and poverty intersect with the disability identity (see for example: Barnartt and Altman 2013; Ben-Moshe and Magaña 2014; Pal 2011; Rosenblum and Travis 2015), there is little to no work or respect given to the way disability intersects with civic identity. The international disability-rights movement claims all DPOs as their own and promotes the same norms for DPO behavior irrespective of where those DPOs are located or the civic cultures in which they are embedded. If the goal of disability rights is to promote disabled persons’ right to participate in their communities, we must recognize that civic participation is defined in ways that go beyond rights advocacy to include self-help and cooperation. If the international disability-rights movement does not recognize this aspect of intersectionality, they risk pushing DPOs to act in ways that alienate them from their local civil societies rather than promote their inclusion. Second, neo-institutionalists historically theorize organizational change from the perspective of the top-down or macro to micro. In the case of the school example above, that would mean looking at the way in which standards-based education writ large and Catholic culture broadly work their way down into a particular school setting. By focusing on the daily interactions within and between Segovia’s DPOs, however, I am able to work from the bottom up by showing the micro-foundations of institutions (Zilber 2016). Institutions are not free-floating abstractions, but concrete practices that are made manifest in social interaction. For a Catholic school, what standards-based education and Catholic culture mean in their specific practice depends far more on the ways in which teachers, administrators, students, and parents in one particular school come to understand it in the daily life of the school than what the Department of Education or Vatican has to say on a particular policy or official teaching. In Segovia, the form and practice of DPOs is determined by persons with disabilities, international experts, and everyone in between in interactions that range from hours-long discussions to millisecond micro-expressions. As with socialization in our daily lives, an eloquent argument can have the equivalent power as an eye roll in governing what course of action is or is not taken. Given that every organization offers its own players and context, the way in which two institutional logics are wed together promises an unlimited number of combinations. Thus, this move from a macro-gaze to micro-analysis and move from Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

Intersecting Institutional Logics and Organizational Fields

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analyzing an organization as the member of one field to the member of intersecting fields, transforms neo-institutionalism from a tool for identifying “surface similarities” (Hallett 2010: 55) across organizations to a method for highlighting “internal differences” within and between organizations at the intersection of two or more institutional logics (Meyers 2014c). In short, it changes neo-institutionalism from a theory of homogenization into a theory of hybridization. The “inhabitants” of institutions (Hallett and Ventresca 2006), such as the members of DPOs, are constantly negotiating competing logics. In doing so, they promote diversity. Ironically, while the international disability movement may want all DPOs to think and act the same, their interaction with local DPOs in non-Western civil societies may be making them far more diverse than international disability activists and traditional neo-institutionalists would otherwise predict. The micro-sociological or “inhabited” institutions approach is adept at capturing how organizations diversify when the old clashes with the new (Lounsbury 2007). Binder, for example, shows the way organizations perform “bricolage” as “real people, in real contexts, with consequential past experiences off their own, play with [institutional logics], question them, combine them with institutional logics from other domains, take what they can use from them, and make them fit their needs” (Binder 2007: 568). When the international disability-rights movement does not allow this type of flexibility, they risk making DPOs less democratic because organizations become beholden to international NGOs and global networks rather than responsive to local members and persons with disabilities in their home communities. In Segovia, DPOs survive, and sometimes thrive, when they act according to expectations. Those expectations, however, are becoming harder to be met. When they act according to solidaridad, persons with disabilities want to join them and other local organizations want to partner. They are considered locally to be good organizational citizens who exemplify self-help and cooperation. At the other end of the pendulum, DPOs can also potentially survive and thrive by becoming disabilityrights advocates. International disability NGOs are more likely to give them grants, invite them to their meetings, and otherwise include them in their activities when they propose advocacy activities that conform to the expectations of the international human-rights field. In each case, the outcome of organizational survival, however, requires they look and act according to expectations. It is, however, difficult to be “all things to all people,” and the leaders and members of Segovia’s disability-rights coalition have a difficult needle to thread as members of both local civil society and the international disability-rights movement and want to be good members in both of these overlapping field. Spending more time on services and not enough on rights advocacy might make international donors think they “don’t get it” or lack commitment. Or, on the flipside, participating in all the rights-advocacy activities, to the neglect of self-help activities, may alienate a DPO’s members, who joined because they have something concrete they want to share. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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dpos on center stage While neo-institutional theory is helpful in understanding Segovia’s grassroots disability associations, there is nothing theoretical about the tensions that they feel. During a National Disability Day rally that CDIS sponsored in 2010, Segovia’s seven disability associations were caught, literally, between two logics as they stood together on the community center’s stage. Off to stage right stood a representative from HI, one of the funders of that day’s events. Above the stage hung a banner proclaiming “25 Agosto: Día Nacional de la Persona con discapacidad” along the top, Comisión Departmental de incidencia y sensibilizacion de personas con discapacidad (Departmental Commission for Advocacy and Awareness – CDIS, a coalition made up of the seven associations) in the middle and below it, untranslated from English, ran the logo for the Disability Rights Fund. To stage left sat the mayor, an up-and-coming member of the Sandinista Front. HI was funding the day’s event under the auspices of its Making It Work program to “strengthen [DPO] advocacy to influence social change” and the guidelines for Disability Rights Watch’s grant state they are to be used to “strengthen local stakeholders [i.e. DPOs] to hold their governments accountable for fulfilling the rights of persons with disabilities.” As would be expected, each of Segovia’s DPOs made speeches advocating for their rights according to the CRPD. The administrator from HI looked pleased as Miss Deaf Nicaragua, a local member of the Nicaraguan Association of the Deaf, signed an impassioned speech demanding the municipality put a signlanguage interpreter in every classroom; the Association of the Physically and Motorly Disabled pointed out all of the inaccessible buildings that needed to be changed; and the president of the Association of the Blind encouraged the City Hall to pass an new municipal ordinance establishing an office for disability affairs. The mayor, however, was given the microphone and began walking across the stage. He complimented each DPO for the important work it was doing and outlined a few of City Hall’s accomplishments – some new ramps around the central plaza and more children enrolled in public school. He then took the speech in a very different direction and cited that, yes, more work needed to be done, but it was not simply the government’s job to do it. He waved his hand to the people in the audience and the DPO leaders on stage. The government and the people were “brothers,” he explained. He then went on to appeal to three words: “Cristiana, Socialista, Solidaria” (Christian, Socialist, Solidarity). These three words were the Sandinista Front’s motto and an exemplification of the continuing cultural power of the Sandinista Revolution thirty-one years earlier. If disability rights were to become a reality, everyone had to play their part in contributing toward the common good. Simply put, rights were not the responsibility of the state, but the responsibility of the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:34, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.002

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state and civil society working hand-in-hand, in solidaridad. Advocacy would never be enough. Self-help and cooperation were not separate, but an instrumental part of promoting rights. When the mayor was finished, the auditorium erupted in patriotic applause. The DPOs beamed back up at him – not because he was dismissing their calls for human rights, but because he was including them in their fulfillment. The representative from HI, however, was not beaming, but stood still with folded arms.

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3 The Problem with Pretty Little Programs

born from solidaridad As you enter Segovia on the highway, you are greeted with a metal silhouette statue of Augusto Sandino. His outline, punctuated by a wide-brimmed Panama hat and flaring military Jodhpur pants, is ubiquitous throughout Nicaragua, represented in forms as varied as giant murals on the sides of multistory buildings through to tiny figures stenciled onto wallets and keychains sold in tourist areas. The largest silhouette is Managua’s most recognizable landmark, a sixty-foot tall statue that guards the city below from its vantage point on top of the Tiscapa volcano. Segovia’s statue is less dramatic than Managua’s, standing just ten feet tall, but its importance is in no way diminished. The monument signals to citizens and visitors alike that Segovia is a city that celebrates Sandinismo values. Indeed, Segovia is famous for having endured and repelled multiple attacks from Somoza’s National Guard and later Contra guerilla fighters in the lead up to the Revolution and the subsequent civil war. In order to ensure that the meaning of Sandino’s profile is well understood, the base of Segovia’s statue is brightly painted with the slogan “Poder del pueblo” (“Power of the people”) on one side and solidaridad on the other. Directly across the street from the marker of Sandino is Segovia’s local chapter of Los Pipitos, known formally as the Association of Parents of Children with Disabilities. Los Pipitos is a national organization in Nicaragua, made up of dozens of independent parents’ groups representing each village or town. Its history not only dates back to the massive organizing efforts that took place during the Revolutionary Period of mass organizations, but Los Pipitos itself was founded by one of the Revolution’s most celebrated figures: Omar Cabezas. Los Pipitos epitomizes the call to action represented by Sandino’s silhouette; the grassroots organization is a tribute to the power inherent in people coming together according to Nicaragua’s model of civic participation. Downloaded from https://www.cambridge.org/core. Access paid by54 the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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Cabezas, who is still a popular political figure and current member of the National Assembly, was the only surviving member of a small group of radicalized university students in Nicaragua’s second-largest city, Leon. When they joined the underground Sandinista movement in the 1960s, Cabezas was one of the principle leaders of their massive organizing efforts in Leon’s poor barrios, bringing people together for self-help and the revolutionary cause. He then went on to be one of the first Sandinista military commanders, living for years as a guerilla leader in the northern jungles not far from Segovia. Following the Revolution, Cabezas was appointed as a leader of the Ministry of the Interior and then, later, became an internationally known author (and protégé of Ernesto Cardenal, the priest, poet, and Minister of Culture) for his bestseller memoire Fire on the Mountain (titled La montaña es algo mas que una inmensa estepa verde in Spanish), which is also considered the first literary work written in Nicaraguan vernacular. But, perhaps Cabezas’s most important legacy has been as a “founding father” of Los Pipitos in 1987 with his wife the “founding mother.” At that time, Cabezas and his wife had just given birth to twin daughters with Down’s syndrome. Not knowing what to do and unable to find someone in the Ministry of Education who had worked with children with disabilities, they sought out and found nineteen additional parents in Managua with children with physical, sensory, and intellectual disabilities. In the words of an administrator in the Los Pipitos national office, the original parents were drawn together because they “had found they had common needs, common concerns.” They decided to establish their own solidaridad association, through which they could learn about their children’s disabilities together, share caregiving responsibilities, and, most importantly, learn physical therapy and educational techniques (from books and experts), which they could do together during playdates they organized in neighborhood community centers. Shortly thereafter, the original twenty-one parents organized an “informal meeting” to find additional parents. Soon, they were “overwhelmed because they never imagined that there were so many – so many parents with a similar situation.” More than five hundred parents had shown up, and thus Los Pipitos became a national movement and important mass organization, with other sets of parents in other parts of the country hearing about the original Managua group and deciding to found their own chapters in their own local communities. In this way, Los Pipitos exemplified a voluntary, bottom-up organizing effort. It is important to note that despite Cabezas’s obvious connections and position of power as a government official, after his initial inquires, he never attempted to create a top-down government program. Instead, like fighting in the jungle or serving in the Ministry of Interior, organizing Los Pipitos became another way that he lived out and contributed toward the Sandinista revolutionary cause. Given this heritage, Los Pipitos stands out as an exemplary case of Nicaraguan solidaridad in action. Its official vision statement states: “We are a voluntary partner Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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association of parents, mothers and relatives of children, adolescents and young people with disabilities. We provide mutual support and solidarity [i.e. solidaridad] and we work so that our children reach their full development and happiness in a society with equal opportunities.” Its official history reiterates those points, and also frames its work as a community-wide effort that goes beyond parents of children with disabilities to exemplify the way in which solidaridad is an invitation to the whole community to contribute rather than an organizing principle for a narrowly defined identity or interest group. “From its inception, Los Pipitos encouraged and stimulated support and solidarity [i.e. solidaridad] from different sectors, associations, organizations and personalities. A fundamental pillar for the community work of Los Pipitos has been the Network of Friends, a group of people who freely make their relationships, influences, abilities, knowledge or resources available to the Association to carry out its activities” (Los Pipitos 2017).

bigger and better in segovia The Los Pipitos chapter in Segovia was one of the first chapters established after Cabezas had created the original model in Managua. In Segovia, it started in much the same way, with a group of parents of children with disabilities hearing about the original Los Pipitos group in Managua and deciding that they too should get together to support one another, soon after opening a preschool for children with physical, sensory, and intellectual disabilities in a Segovia neighborhood community center. During this period, the parents ran it themselves, taking turns volunteering as teachers and organizing workshops where they shared what they had learned at home in terms of educating their child or invited an “expert” to train and advise them. I spoke with Violetta, one of the founding members of Los Pipitos in Segovia. She and her husband had three children together, each of whom developed muscular dystrophy and subsequently died before they had reached the age of twenty. She outlined the early days of their group, explaining: “We began first by coordinating meetings. We did them in houses. Then we began visiting other organizations, where we were looking for people to be in solidarity with us.” Later, they began inviting experts, including a professor, because “We didn’t know what to do with our children, we needed training,” then going on to describe that “many people with children with physical disabilities would carry their child from place to place or keep them in bed at home, not knowing that they could become mobile and independent.” Working together within a broad coalition taught not only the parents but also the larger community how they could support children with disabilities in attaining a full life. Over the years, the Segovia chapter grew far beyond this original model to become the large, semi professionalized operation that I became familiar with during my fieldwork. Its facilities and services were impressive, no longer supported Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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solely through the work of the community but through grants and donations that had come from abroad, including the European Union and a number of international NGOs. Parents, however, still ran the board, and many volunteered on a daily basis, but the Segovia chapter now had a paid executive director, finance person, and professional rehabilitation and education staff. Despite this move from an all-voluntary effort to an internationally supported center, Los Pipitos still remained the pride of Segovia and a concrete demonstration of “people power.” For example, every time I met a new person in town during my field work and explained to them what I was interested in (i.e. learning about local disability associations), they would wax eloquent about Segovia’s Los Pipitos. In this poor city in a poor country, the local Los Pipitos operation also stood out physically. It consisted of a relatively large complex of well-maintained offices, classrooms, physical-therapy clinic, auditorium, basketball court, and series of workshops. It even had a small outdoor swimming pool for hydro-therapy, albeit green with algae because after it was initially built using international funds, the local chapter could not afford the costs of daily chlorine treatments. The building and grounds, however, were in far better shape than virtually any other public or private building in Segovia, whether neighborhood school or private hotel. But its most significant attribute was not its built environment, but its continuing level of broad local support. Everyone I met in Segovia seemed to be a volunteer, donor, or allaround enthusiast. The largest ongoing activity at Los Pipitos in Segovia was the Centro Juvenil, or Youth Center, which was a day program where adolescents and young persons with disabilities came for education and training. While it remained cross-disability, the vast majority were young people with intellectual disabilities, a reflection of the disproportionately greater number of resources and opportunities for people with physical and sensory impairments. Volunteers and paid staff did everything, from teaching carpentry to the youth in the workshop through to giving lessons on sexuality and reproductive health. The Center was always bustling with several dozen young people, some of whom spent the whole day there and others of whom went to the city Special School in the morning and then to Los Pipitos in the afternoon. In those cases, many parents and staff would argue that their real learning took place at Los Pipitos rather than at the Special School, because Los Pipitos had real expertise and real resources. In addition to the international support and local donations, this large operation was supported by a variety of means, including selling products made by the youth. Local storeowners sold woodwork, candles, and other crafts made by the Los Pipitos youth. The local government and many businesses also periodically ordered significant amounts of furniture, such as tables, desks, benches, and chairs made in the carpentry workshop. It was common to see furniture made at Los Pipitos in health-clinic waiting rooms, restaurants, and private homes throughout Segovia. Los Pipitos also operated a Spanish school taught by parents. Throughout the year, Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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groups of volunteers, missionaries, and tourists from Europe and North America would take intensive Spanish training classes at the Los Pipitos Spanish school and live in the community through homestays coordinated by the center. In these ways, Los Pipitos wove itself into the fabric of Segovia’s community life, touching virtually everyone in some way. Socially, Los Pipitos represented an important organization in other ways. Whereas its board remained made up of both poor and middle-class parents of children with disabilities, its executive director was usually one of Segovia’s most prominent citizens. For example, when I first began observing Los Pipitos in Segovia, the executive director was the former vice mayor, a beloved figure and important Sandinista party member. Equally important, Los Pipitos was highly respected in terms of its knowledge regarding education and rehabilitation of young people with intellectual disabilities. When I interviewed local representatives from the Ministry of Education or talked to administrators and teachers working in Segovia’s schools, including both the regular school and the special education school, they would readily admit that Los Pipitos had far more expertise and far higher rates of success preparing young persons with disabilities for adulthood than they themselves believed they did. This was confirmed by Tania, the director of the Youth Center at Los Pipitos in Segovia. She explained that they had an ongoing relationship with the Ministry of Education, often times inviting them to workshops and trainings held at the Center. In regards to Segovia’s Special School, she explained: “We are always in coordination with the Special School, because they refer us children because they [the Special School teachers] are unable go beyond the school curriculum, but they know we can teach the youth much more.” Lastly, Los Pipitos was raved about when I spoke to its regular members – the parents who joined with their children. They often described the Youth Center as initiating a “powerful transformation” in their kids’ lives, and retold a version of the same story, wherein their children were either isolated at home, bullied in regular public school, or learning nothing at the local Special School. Then someone told them about the youth programs at Los Pipitos and once they had brought their child there, immediately he or she made friends, learned things that they as parents never thought they could be taught, developed a healthy self-esteem, and flourished. Violetta, the founding member in Segovia and mother of three children with disabilities as discussed above, explained that when her first son started to develop muscular dystrophy, he became withdrawn. “At first he did not want to talk.” Then she started bringing him to the Los Pipitos group. “Quickly, he was independent. With all the kids, he was talking and everything. And he became very intelligent.” Even though all three of her children had passed away, Violetta described her continued involvement with Los Pipitos: “I learned many things and I am very proud of the three who are dead now, because all three are very strong in my memory and I want to continue working with them and all children with disabilities.” Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

The Center of the CRPD

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A different founding member of the Segovia group explained to me the importance of Los Pipitos in changing her and others’ attitudes about having a child with a disability. Through Los Pipitos, she and the other parents not only learned and taught one another skills or worked together to create a space where their children could socialize and play with others, but also: “It taught us as their mothers not to grieve, not to feel shame about having a child with a disability. It raised our awareness as a family and a society.” From the young people themselves who I spoke with, although I was unable to formally interview them without their parents and representatives from Los Pipitos’ staff present (talking privately with unaccompanied minors with intellectual disabilities in Nicaragua being an IRB bridge too far for my university to allow me to cross), all echoed these sentiments and seemed to live them out in participant observation. In all of these ways, through the support and expectations that the parents, youth, and larger community held out for the Los Pipitos chapter in Segovia, it was firmly embedded within the local civil society as an organizational field and in full conformity with the norms and beliefs that structured the activities of Segovia’s grassroots associations, including organizations representing persons with disabilities. Simply put, it is hard to imagine a better example of what the values and practice of solidaridad look like than this beloved local organization. That is, until the Convention on the Rights of Persons with Disabilities rolled into town. At the time I was first introduced to Los Pipitos, the precise role civil society should be playing in the lives of young persons with disabilities was being worked out two-thousand miles to the north, in New York City. Soon, it would have a direct impact on the lives of dozens of young persons with disabilities and the larger community in Segovia.

the center of the crpd For a few days each year, the United Nations hosts the Conference of States Parties to the UN Convention on the Rights of Persons with Disabilities in New York. The Conference is an accountability forum, where signatories of the CRPD (i.e. States Parties) must report to the Committee on the Rights of Persons with Disabilities regarding the progress they have made implementing the international humanrights Convention at home. The official ambassadors and government emissaries there to submit their States Parties reports, however, constitute only a small fraction of the Conference’s participants. In fact, the official reporting going on within the main assembly hall is dwarfed by the activities of the hundreds of representatives from international NGOs; heads of global, regional, and national DPO networks; disability focal persons from UN agencies; disability inclusion officers and administrators from foreign-aid agencies and private foundations; and a “who’s who” of recognized international disability-rights experts and activists ranging from Judy Heumann, co-founder of the US disability movement and major advocate for the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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CRPD from her position at the World Bank, to Tom Shakespeare, leading disabilitystudies theorist and professor at the University of East Anglia in the UK and advisor on the WHO/World Bank’s inaugural World Disability Report in 2011. As a result, the real action of the Conference is not happening among the Committee and States Parties in the Assembly Hall, but is taking place in animated conversations between members of civil-society organizations and others as they informally gather in corners of hallways or formally meet in the dozens of seminar rooms throughout the UN Annex reserved for workshops, seminars, and group discussions. In these formal and informal encounters, the meaning of the CRPD is defined, including its meaning for local civil-society organizations representing persons with disabilities. Within these various conversations, the CRPD’s relatively general norms (i.e. articles) become increasingly specific as international experts, NGOs, and UN agencies roll out an endless number of papers, pamphlets, and PowerPoints that soon begin to say the exact same thing. Through all of this activity, a consensus is built regarding how the CRPD should be put into concrete action on the ground, often in elaborate detail. Once solidified, donors step in, working with international expects and activists to identify their funding priorities according to the newly agreed global best practice. In this way, the Conference represents the very center of the institutional field within the international disability movement where rules, norms, and practices are defined for states and civil society and new organizational models disseminate out toward the periphery, including to Segovia, through grant funding, capacity building, and technical assistance initiatives that act as their carriers. All of these initiatives work to define exactly the role local DPOs will play in the implementation of global plans. In the summer of 2011, I attended the Conference of States Parties. The options of side events listed in the program guide were seemingly endless. In order to narrow it down, and given that no one from Segovia’s grassroots disability associations was in attendance (indeed, the very idea of going to a place like New York was a mere fantasy to the many local DPO members in Segovia, most of whom had barely left Segovia’s city limits more than a handful of times in their entire lives), I decided to go to workshops relevant to the DPOs I had gotten to know there. At the very least, I could pick up some pamphlets or brochures that the groups might find helpful. For that reason, I decided to go to a workshop on the right to inclusive education (CRPD Article 24) to see if I could learn anything useful to Segovia’s Los Pipitos and their Youth Center. Article 24 is one of the more specifically defined articles within the CRPD, representing its importance to the negotiators of the original Convention. The gist of the article is that children and youth with disabilities should be integrated and supported within the general educational systems rather than educated in specialized and segregated schools and classrooms. The small conference room quickly filled up as I perused a table of literature on inclusive education and began to build a stack to take with me to my field site the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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following week. My pile soon became thick with booklets, pamphlets, and information sheets with titles like Best practices in inclusive education for children with disabilities from USAID, Making inclusive education a reality from Sightsavers, Implementing inclusive education from the (British) Commonwealth Secretariat, and Guidelines for inclusion from UNESCO. There were dozens of additional reports and brochures from all of the usual suspects: CBM International, Action for Disability and Development, Inclusion International, HI, International Disability and Development Consortium, UNICEF, the Australian Agency for International Development (AusAID), and so on. In order to cut down my stack, I began comparing documents with one another. Despite the variety of organizations offering advice and the diversity of case studies many drew from around the world – Africa, Eastern Europe, Asia, Latin America – I soon learned they were all remarkably similar to one another. While the technical advice on inclusive education, such as accommodations and curriculum, varied somewhat, the overarching message was the same: governments had a legal obligation to include children with disabilities in regular schools and, most importantly, local civil society had the responsibility of holding their states accountable to that obligation. Despite the CRPD itself not referencing civil society in Article 24 itself, each and every piece of literature I had picked up contained the specification that DPOs needed to be advocating for and monitoring the government’s implementation of inclusive education. UNESCO’s guide on inclusive education, for example, offered this set of recommendations: “It is thus imperative [to implement inclusive education] that schools and local authorities take the responsibility to ensure that this right is implemented. Concretely this involves:  Initiating debates around how the community understands human rights;  Generating collective thinking and identifying practical solutions such as how human rights can be made part of the local school curriculum;  Linking the Human Rights movement with educational access;  Fostering grassroots action and strengthening its ties to the policy level in order to promote protection;  Encouraging the creation of community and children’s councils where issues of access can be discussed; and  Developing a community-school mechanism to identify children not in school as well as develop activities to ensure that children enroll in school and learn. Furthermore, adequate resources must be matched with political will, and constituent pressure maintained on governments to live up to their obligations” (UNESCO 2005: 13).

The booklet makes clear that UNESCO’s human-rights-based approach to inclusive education means that there is a large role for civil-society organizations, who are Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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to “initiate debates,” “foster grassroots action,” “encourage and create [and participate on] community councils,” and “maintain pressure” on the government to “live up to their obligations.” In this way, UNESCO’s guidelines and dozens of similar ones pair the CRPD’s civil-society mandate that DPOs advise the state and monitor its actions regarding their rights (Articles 4, 29, and 33) with the CRPD’s more technical articles, such as Article 24 on Education, which states that “States Parties shall ensure an inclusive education system” through a long list of specific provisions, including: “that children with disabilities are not excluded from free and compulsory primary education, or from secondary education;” “[they] receive the support required, within the general education system, to facilitate their effective education;” and “[to] train professionals and staff who work at all levels of education.” What UNESCO and others’ best-practice guidelines do not say, and what Los Pipitos in Segovia does, is provide education. What that guidebook and the workshop that soon followed made clear was that according to global best practice, Los Pipitos in Segovia was a bad actor. In short, Los Pipitos was not conforming to the institutions structuring the global organizational field for disability associations.

pretty little programs The workshop on inclusive education at the Conference of States Parties began with a triumvirate of international disability-movement leaders calling things to order, representing the head of disability at a major UN agency, a director of a major international development agency, and an inclusive education expert of one of the largest international disability NGOs. Their presentation began as a straightforward recapitulation of the kinds of best-practice bullet points I had just been reading. They too spent time highlighting the way in which civil society was intended to participate: as advocates pressuring their government to “make disability rights a reality.” When the formal presentation ended and they began to take questions, however, the audience and presenters began to engage in a very open discussion of the obstacles they and others were continually encountering when trying to ensure the actual implementation of the CRPD’s vision of inclusive education, especially in the Global South. In less than a minute, one particular barrier rose to the surface, where it would remain for the next hour: grassroots disability associations. Over and over again, international NGO personnel, donors, and UN staff pointed out that people with disabilities themselves and their local organizations were often the biggest resisters to change in education for persons with disabilities. As people’s comments and stories built off of one another, a general consensus formed that the problem was that persons with disabilities in developing countries needed to develop “a clearer understanding” of the right to inclusive education under the CRPD, and that they – the people in that room – had the responsibility to provide those presumably misinformed local DPOs with “an improved concept” Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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of what their rights meant and how they should be implemented. For example, the education specialist for a major international development agency observed: “We need to get DPOs themselves to understand the policy, the meaning of the UNCRPD, its interpretation, and how it can be applied.” This was followed by an international consultant specializing in inclusive education, whose clients included foreign-aid agencies and Europe-based disability NGOs and who had implemented capacity building training on their behalf in more than a dozen countries, from South Africa to Argentina. Forcefully, he stated: “We must reeducate disability advocates [in developing countries]” because they currently believe the wrong things. A new wrinkle, however, was introduced to this assertion that it was just a lack of understanding of the CRPD on the part of local organizations that stood in the way of ensuring the right to inclusive education globally. Instead, not only was the problem that the members and leaders of grassroots associations at the local level did not understand the human right to inclusive education for persons with disabilities, but that they were also involved in educating persons with disabilities themselves – they were service providers rather than human-rights advocates! Actually educating persons with disabilities, therefore, represented the very antithesis of civil society’s advocacy role as promoted by the people in that room, the best-practice guidebooks they had written, and the letter of the law as written in the CRPD. One short exchange illustrates the duel nature of the problem of grassroots disability associations not understanding disability rights and not living up to their expected role as legal advocates. The top disability person from a UN agency stated that “the problem has been [local] advocates have been too focused on the education of persons with disabilities and not on changing the whole system.” She then paused and threw her arms up in frustration, adding an exasperated coda: “The problem is they just want to keep their pretty little programs.” I realized then exactly what she was referring to: the schools, training initiatives, and other services being provided by local disability groups around the world for the purposes of educating children. She was referring to programs just like the Los Pipitos Youth Center in Segovia.

recoupling on the road to salvation While no one at the Conference of States Parties may have been personally familiar with Los Pipitos and its history in Segovia, their discussion of Article 24 exemplifies the motivations and beliefs that undergirded a concerted effort to convert Los Pipitos in Segovia from a local organization bringing the whole community together to support young persons with disabilities into a narrowly defined, identity-based (persons-with-disabilities) advocacy group focused on government accountability. From the vantage point of New York, organizations like Los Pipitos were a clear problem because they did not conform with the role laid out for DPOs embedded Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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within the Convention. In short, their organizational model was based on an entirely different logic. Yet, by agreeing to be a member of Segovia’s local disability-rights coalition, Los Pipitos broadly identified as being a Disabled Persons’ Organization and advancing the human-rights agenda. In institutional sociology, this condition of an organization having a putative identity as the member of an organizational field, but not implementing the corresponding practices expected of those members, is described as a state of being “decoupled” or “loosely coupled” (Hallett and Ventresca 2006; Meyer and Rowan 1977; Selznick 1996). Loose coupling refers to the ways in which an organization has adopted a symbolic identity that gives them legitimacy in the eyes of other organizations in the field, but lacks the appropriate practices as set forth by that field. For all intents and purposes, Los Pipitos looks like a “civil-society organization representing persons with disabilities,” as described throughout the CRPD, but upon closer inspection turned out to be one of those “pretty little programs” (i.e. services) discussed by elites within the international movement rather than an advocacy group “maintaining pressure on governments” according to those elites’ best practices. This makes Los Pipitos a sort of heretic that members of the faith – members of the international disability-rights movement – soon became determined to bring back into the fold, and seemingly willing to implement the organizational equivalent of “conversion by swordpoint.” I am intentionally using the term convert to describe the attempted “recoupling” actions that took place once Los Pipitos in Segovia was identified for organizational change. The roots of the word “convert” are based on the Latin words for “altogether” (con) and “turn” (vertere), meaning to send an individual or group in an altogether different direction. Indeed, for Los Pipitos to conform to the best practices laid out by UN agencies and international NGOs, it would need to fundamentally change. The bulk of the work within neo-institutional sociology, including neoinstitutional studies of human rights, has focused on loose coupling, usually producing a descriptive analysis of how organizations essentially say they are one thing, but continue to do something other. These studies are important for understanding why organizations often comply with institutional ideals in symbolic, ceremonial ways (Meyer and Rowan 1977), but not in their actual day-to-day work activities. Meyer and Rowan refers to institutions as “myths” that spell out a “rational theory of how” organizations should operate (342). In the disability-rights world, these myths are encapsulated in those best-practice documents I gathered at the UN spelling out how DPOs should act if they want to fulfill their role as representatives of persons with disabilities under the CRPD. Neo-institutionalists that apply the approach to the international community of states and organizations, often called world-society theorists, have used the idea of loose coupling to describe their observation of states adopting human rights in “myth and ceremony” by signing treaties and framing their actions in rights Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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language, yet but do little in day-to-day practice to conform to human rights’ norms (see: Hafner-Burton and Tsutsui 2005; Hafner-Burton, Tsutsui, and Meyer 2008). My investigation of Los Pipitos, however, goes beyond simply describing loose coupling, to instead describe “recoupling,” or the processes by which a myth is made “incarnate” (Hallett 2010). Wade Cole, for example, is a world-society theorist who has begun to challenge the notion that human rights are destined to remain just myth and ceremony, to instead identify circumstances when states not only sign up to human rights, but make fundamental changes on the ground. Apropos to this book, Cole found that human-rights regimes institutionalizing a role for civil-society organizations monitoring governments leads to tighter coupling between structure and practice (Cole 2012; see also Goodman and Jinks 2013 for a world-society approach to state conformity with human rights). But Cole’s work is a macrostudy that identifies variables but not processes. Nor does he look at how human-rights regimes shape civil society. Instead he simply focuses on the ways in which civil society shapes states, much in keeping with the work of people like Keck and Sikkink (1998) do in Activists Without Borders and all of the subsequent work it inspired. Hallett, a micro sociologist, however, is one of the few institutionalists to look at the internal processes by which an organization, in his case a school in the US.A., moves from symbolic to concrete conformity within a field, finding that such change is often the result of immense pressure that creates turmoil before ultimate compliance (Hallett 2010). In my case study of Los Pipitos, I do two things. First, I focus on a civil-society organization conforming with human-rights norms rather than focusing on states being held accountable to human rights. Second, I go beyond most neo-institutional studies, including Hallett’s, to show how organizations can not only be a member of two organizational fields, but that recoupling in one field results in decoupling in another, resulting in a sort of institutional tug-of-war where different groups push opposing expectations. This helps explain why many grassroots organizations may ultimately reject international human rights and the global networks that advance it.

posters on the wall Just a week after participating in that workshop on inclusive education at the Conference of the States Parties in New York, I was back in Segovia and feeling a sense of relief when the sweltering and exhaust-belching bus I had ridden up on from Managua rolled past Los Pipitos and the ten-foot tall silhouette of Sandino as we entered town. My backpack was heavy with best-practice guides as I contemplated what the volunteers, staff, and parents at Los Pipitos would think when I showed them to them the next day. This would not be the first time that I had spoken with people at Los Pipitos about the implications of the CRPD for their work. In fact, it had been a recurring conversation since my first field visit to Segovia. Now, however, in 2011, I realized more than I had before that Los Pipitos was only Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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loosely coupled with the larger international disability-rights field. What struck me as particularly unfortunate was that Los Pipitos in Segovia did not even know. While it was easy to see, from the perspective I had gained at the UN, that they were a “pretty little program” out of sync with the CRPD, from the perspective of its members and boosters in Segovia, they believed they were completely aligned. In August, 2008, on my first visit to Segovia, I had met with Denis, Los Pipitos’ Executive Director and Segovia’s former vice mayor. I asked him if he was familiar with the CRPD and international disability rights. He said of course he was, and went on to say that advancing the rights of children with disabilities was what Los Pipitos in Segovia was all about. Denis went on to state that his day had begun with a case of a “violation of rights.” That morning, he followed up on a call from the neighbors of a household with a teenage girl with disabilities. The neighbors were concerned that the father was physically abusing his disabled daughter, so they notified Los Pipitos. Denis had gone to the home, to see the girl and speak to the father. He also told the parents that the Los Pipitos bus would begin picking up their daughter the very next morning, because he wanted her to come to the Los Pipitos’ Youth Center, where he believed she would not only thrive, but Denis also thought he could keep an eye on her and know if there really was abuse going on. He ended the story by summarizing the situation: the girl was isolated at home and possibly abused; according to Denis, this was “a problem of her rights – her father doesn’t understand that she has rights!” Next, he took me over to a bulletin board, half of which was dominated by a large newspaper clipping. “You know, there are many people who do not understand the rights of persons with disabilities; for example, many do not think they should marry. But if they are in love, and they are responsible, they have the right like all others.” He then explained the news story, which was headed by the photo of a bride and groom, both young adults with Down syndrome, walking down the aisle between applauding wedding goers. Denis explained that the couple had met at the Youth Center several years ago and last year told their parents and Los Pipitos that they wanted to marry. So, he and Segovia’s board decided that not only would the Youth Center support them in getting married, but that they would throw them the biggest wedding they could, which was later held in the large auditorium just next door to Denis’s office. According to both Denis and the newspaper, the Los Pipitos couple became the first to marry, with developmental disabilities, not only in Segovia but in all of Nicaragua. Denis then went on to speak more generally, about the poverty, lack of education, isolation in the home, and unemployment that young people with disabilities face. Each time he punctuated his remarks by exclaiming they had the “right to education,” the “right to work,” and so forth. He then explained that it was his mission (as executive director) to make sure that the fifty-two teens enrolled in the Youth Center, and also the rest of Segovia’s children with disabilities, had their rights. He stood up and walked me over to a file cabinet in the corner of his office, opened it, Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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and began pulling out freshly printed posters from several stacks within. As he spread them out on his desk, he continued talking about rights. The posters were locally produced by a photographer and by a print shop owner who were active members of Los Pipitos. The first poster showed a young woman working on an art project at a table with a caption that read “we also have the right to education,” followed by “Los Pipitos – Segovia Chapter – Youth Center.” The next poster showed a young man rolling a cigar in a local factory, with the caption “we also have the right to work.” Another one showed an older volunteer and a youth seated next to one another outside the Youth Center, smiling and laughing, with the caption “we also have the right to friendship.” There was even a poster of a young woman sitting in a dentist’s chair having her teeth examined, with the caption “we also have the right to dental health.” As Denis and I discussed the posters, he pointed out that each of the kids was currently at the Youth Center or a graduate. He also explained that the tobacco-factory owner, volunteer, and dentist were all friends of Los Pipitos in Segovia, and not themselves parents of children with disabilities. Later, I would actually go to the dentist for my own checkup and reencounter the “right to dental health” poster hanging prominently on his waiting-room wall. The young dentist, whose mother was a volunteer in the Los Pipitos Spanish school, explained that even though he was just barely making ends meet with his dental practice, he thought the world of Los Pipitos and had called them to say that he was happy to help any youth in need (i.e. those without parents who could not otherwise afford dentistry). During that same summer, I also spoke to Tania, the director of the Youth Center. She too saw Los Pipitos as advancing rights, particularly the right to employment. She described the work of the Youth Center as “. . .basically, work in two lines: One is empowering young people so they can be integrated [into society] and the other is accompanying them through that process of integration. That way they can graduate [from the Youth Center] and have a job. . .have an active network in the community and a participatory role in their home.” She went on to explain the Youth Center as first training young persons with disabilities, and then “accompanying” them to jobs where they had been placed or even to homes to ensure people included them. I then went on to ask her about the CRPD, which she was familiar with, and what rights she thought were most important for the young people with disabilities being served by the Youth Center. “For me, it is the right to work. . . For the employer, he may already know the law, but not comply with it if there is no good follow-up strategy. Sometimes they violate their [youth’s] rights because they do not know a lot about adaptations in the workplace. We help them do that so that the youth can have their rights.” In this way, Los Pipitos was again understanding itself as fulfilling the rights of young people with disabilities by providing services to the larger community rather than directing their attention to the state and monitoring its implementation of the CRPD. The Youth Center trained and placed young people in jobs and then used their expertise to assist Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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employers willing to be in solidaridad with them by making the modifications and accommodations (i.e. adaptations) to ensure youth with disabilities could have access to employment. All of these examples of the Youth Center’s work in Segovia exemplify what neo-institutionalists refer to as loose coupling. The human-rights framing symbolized compliance with the formal and informal rules of the institutional field, but the solidaridad-based organizational practice was clearly out of line. For example, Denis talked about his intervention with the family as a rights activity, but it was done completely outside of the state. No police or state social worker was involved, and the resolution to send the girl to the Youth Center was about integrating her into civil society, not a public institution. Similarly, Tania promoted the right to employment for young persons with disabilities by directly going to the employers, rather than getting the Ministry of Labor or public vocational-education schools involved. These posters were a case-in-point of loose coupling. In the perspective of the CRPD, Los Pipitos had done nothing more than reframe their existing activities in the language of human rights. They had adopted a symbolic identity as an organization advancing human rights, yet upon closer inspection the posters had nothing to do with “maintaining pressure on governments” and holding the state accountable, but were instead celebrating what can be accomplished by civil society coming together to support persons with disabilities. While the posters used the term “rights,” a term drawn from the CRPD, the pictures themselves showcased solidaridad by showing Los Pipitos and the larger Segovian community, from local manufacturers to dentists, were doing good work. The photo and the caption were drawn from two opposing institutional fields. The overarching message communicated was that civil-society organizations can fulfill human rights, a clear misunderstanding of the CRPD, which only understands DPOs as advocates of rights and states as ultimately responsible for their fulfillment. UNESCO, for example, is explicit in describing civil society’s role as organizing “constituent pressure” and forcing “governments to live up to their obligations.” Nicaragua’s experiments with democratic socialism and mobilization of mass organizations during the Revolutionary Period had left a legacy whereby grassroots associations did not differentiate their work from the work of the state, but instead saw all of it as part of a single revolutionary project in the spirit of solidaridad.

new posters on the wall The first day back to Segovia from New York, I noticed a new stack of posters had arrived at Los Pipitos and were now being taped up on the Youth Center’s walls. This time, however, the posters were not locally produced in Segovia, nor did they feature any of Los Pipitos’ activities, members, or friends in Segovia or elsewhere. Instead, these much larger and far better graphically designed posters had been paid Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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for by HI (with its logo prominently displayed on the bottom) and had been sent out by the national Los Pipitos office in Managua (also with its logo prominently displayed) to all of the local Los Pipitos chapters in Nicaragua, including Segovia’s. Similar to the previous ones, these new posters also addressed the rights of young persons with disabilities. But instead of presenting Los Pipitos as the fulfiller of rights, it presented Los Pipitos as a rights advocate. The new posters displayed a colorful illustration of a school building accompanied by a giant, fluttering Nicaraguan flag. A smiling teacher stood in the school’s doorway, where she was greeting a line of students as they entered her classroom. Half the children in line were clearly depicted as having a disability – the first little boy on crutches, behind him another boy in a wheelchair, and toward the back of the line a little girl wearing dark glasses and carrying a white cane. The other students, who were interspersed between them, were presumably nondisabled. The poster’s banner above stated: “Together we go to the same school. . . So that no one is left without study,” and the caption below read: “For my right to education, I demand responsibility and acceptance.” The flag made it obvious that the schoolhouse was a state institution, thus this poster, along with the caption, made it very clear that HI and the national Los Pipitos office were directing their advocacy at the state. I would not be surprised to someday see this new poster in a best-practice case-study volume of effective disability-rights advocacy in action. It exemplified UNESCO’s guideline that civil-society organizations, such as HI, an international NGO, and Los Pipitos-national, a DPO, pressure “governments to live up to their obligations.” This poster was an example of “tight coupling,” whereby the rhetoric of the rights to inclusive education as defined by the CRPD (students with and without disabilities together in the same school) was coupled with the practice of civil-society organizations doing rights advocacy as the CRPD’s civil-society mandate frames the role of DPOs. The poster even used the terms right, demand, and responsibility! This new poster, which hung on the walls next to the old ones, would have made the workshop participants in New York very happy. I wondered, however, if anyone in Segovia really understood what it was saying. From my perspective, this poster was not only a call to action that the state change, but a clear organizational model of what HI and, apparently, the National Los Pipitos office thought the group in Segovia should be doing. I would learn that this would be just one of several attempts of the international disability-rights movement norms being institutionalized – or evangelized – in Segovia through its partnerships with the Los Pipitos national office.

the youth center: a nice place or a violator of rights? In September, 2011, just a couple months after I first noticed the new posters, I learned that CBM International, a major international disability NGO, was organizing a workshop for members of Segovia’s local Los Pipitos chapter – including parents, staff, and the youth themselves. The training was being conducted Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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by Gretchen, a European consultant, for CBM’s “International Advocacy and Alliances” initiative, which it had begun in the wake of the passage of the CRPD. The International Advocacy and Alliances initiative was a direct reflection of the CRPD’s civil-society mandate, with CBM describing its human-rights advocacy work as: “Part of a wider moment for inclusive development that strives for the active participation and representation of women, men, girls and boys with disabilities.” I had met Gretchen the year before, when she had also come to town to teach a general disability and human-rights workshop. This time, the focus was exclusively on “inclusive education” and “inclusive employment” (Articles 24 and 27 of the CRPD), a testament to CBM’s commitment to use the UNCRPD as a “legal framework” for its advocacy in order “to promote, defend and reinforce the human rights of all persons with disabilities.” The centerpiece of the workshop on inclusive education and employment was a series of photographs projected on screen. Gretchen showed a photo of a man begging in the street and, employing the Socratic method, asked: “Is this employment?” The participants smiled and answered: “No.” “Why not?” she asked, leading into a question-and-answer exercise where they defined employment as being paid a salary for work. “So, employment is about getting paid, right? You would not want to work and not get paid, right? That would not be employment.” She then asked, gesturing toward the carpentry shop and piñata workshop down the hall from the auditorium: “Well, they [disabled youth] are working next door – making things – is that employment?” The participants happily answered: “Yes, they are learning to do a job.” Then she asked if they got paid? “No. . .” Gretchen then explained that those workshops were not employment, yet they were making people work. The participants were quiet, with many looking confused. Her next slide was of a cinderblock, windowless building with a sign “Workshop for the disabled” and a chain-link fence in the foreground. She translated the sign, which was in English, and explained it was a photo taken of a workshop for persons with disabilities in Africa. Gretchen asked, as she traced the fence with her finger on the screen: “How does this make you feel?” The workshop participants were animated: “It looks like a prison!” one of the parents yelled out. Next, she asked: “Would you want to go in there? Would you want to learn or work there?” Collectively, everyone said no. Gretchen continued: “For me, I think: I don’t want to go in there. What kind of people are in there? Would you want to get to know them? No way. . .” Then she asked: “Is this inclusive? No, it is segregated. It is segregated education and segregated employment.” The following slide was of a brightly lit metal workshop, with half-a-dozen people working together at various stations, some disabled and others not. “How about this? It looks really nice. What do we see?” People responded, pointing out that everyone was working together. The facility was nice and clean and the workers were all happy. “Working together” got written on a paper being used to write down Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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responses to the photo prompts. Then, Gretchen asked: “Are the workshops next door inclusive?” Someone said yes, and Gretchen looked skeptical and asked why. The respondent pointed out that the teachers and volunteers in them were not persons with disabilities, resulting in a back-and-forth where Gretchen clarified that the teachers and volunteers did not matter, it was the workers who did, and they were all disabled. There was silence, as people mulled over what she was saying. Finally, someone protested. “Yes. . .but this is a really nice place to work. It is clean, friendly, and safe! The youth learn so much here!” Gretchen looked down, while they spoke, ignoring the comment. She then picked up a copy of the UNCRPD and began to read: “States Parties recognize the right of persons with disabilities to work on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities” (Article 27 on Work and Employment). She placed special emphasis on the last phrase “open, inclusive, and accessible.” Taking a deep breath, she explained to the parents, staff, and youth in the Los Pipitos auditorium that the Youth Center was against people with disabilities’ human rights to education and employment. The workshop ended in stunned silence. Later that day, I met with Gretchen at a coffee shop in town so that we could discuss the workshop. She explained: “Los Pipitos needs to change,” and discussed the CRPD as the opportunity for that change. She even admitted that not that many years before the European organization she worked for had supported the Youth Center, but now they had woken up to the fact that the organizational model was wrong – that it was out of step with a human-rights approach. It was no longer the job of civil society to do services, it was a state responsibility. It was now Los Pipitos’ turn to follow suit. I even asked her if she thought the Youth Center was ineffective. “No, they do many good things. But they are doing it in an old way. Instead, they need to be promoting rights.” Simply put, Los Pipitos in Segovia no longer fits in the post-CRPD world, whether or not its vocational and social education program is working. Gretchen’s focus on changing Los Pipitos revealed that CBM’s commitment to the CRPD as the “legal framework for human rights advocacy” meant that their first advocacy job, ironically, was not directed at changing the state, but changing civil society itself. It was a project focused on recoupling grassroots civil-society organizations representing persons with disabilities with the practices promoted by the international disability-rights movement’s new emphasis on advocacy. As such, if CBM is to ally with local disability associations in advocacy as part of its “International Advocacy and Alliances” initiative, then it needs those local partners to conform to the CRPD (i.e. not “violate” it themselves) in mission and practice. It needs those civil-society organizations to be rights advocates, not service providers.

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a new strategic plan Shortly after Gretchen’s workshop, I decided to go to Managua so that I could speak with the Los Pipitos national office in order to learn if they too, like Gretchen, thought the Segovia chapter needed to engage in more advocacy. Before leaving for Managua, I spent time exploring the national Los Pipitos website, which I had visited many times in years past. That time, however, I noticed that Los Pipitos had a new mission statement, which included language explicitly about civil society’s role engaging in rights advocacy directed at the state. It stated that Los Pipitos’ role was to work with “the organizations of civil society and the institutions [agencies] of the State, to promote the Human Rights of people with impairments and/or disability, so that together, we can organize, define, legislate, and implement policies, programs, strategies and services.” This new mission statement reflected a tight coupling of human-rights language and practice – it states the full formula, “promote human rights,” “organize, define, legislate,” and “the State.” Further down the “About” section of the Website, Los Pipitos listed their main strategies for accomplishing its mission, including an even more explicit formulation: to “advocate for legislation, public policies, and change institutions of the State.” It was easy to see that despite its history as a solidaridad organization, Los Pipitos had now reoriented itself to the international disability-rights-movement organizational model as a rights advocate and was intent on fulfilling its role under the CRPD’s civil society mandate. It was also easy to see that Los Pipitos in Segovia was now out of step with the national office. When I arrived in Managua, I met with the national office’s senior program manager. I began by asking her what the national office’s role was in relation to local chapters. She began by giving me the familiar Los Pipitos origin story of the twenty-one original parents getting together in Managua and the national movement that grew out of that original meeting, leading to dozens of local chapters everywhere. To her count, there were now eighty-six active chapters throughout Nicaragua. She also explained their original focus and success with rehabilitation and the social integration of children with disabilities. “Then [in the early days of the organization], there was quite a lot of prejudice around having a child with a disability. It was an embarrassment. They [the public] humiliated you – the public mockery was total. But with the birth of Los Pipitos, we can say at the general level, we changed the treatment of persons with disabilities. . . parents no longer have shame taking their child into the street.” I then asked if Los Pipitos’ mission had changed since those early days, and she began to describe a period of reflection the national office had engaged in as preparation of Los Pipitos’ twenty-fifth anniversary, which was that year (2012). During that process, they discovered: “The next step is the empowerment of the parents and children, and with that power the association needs to work in different

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A New Strategic Plan

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ways.” I then asked what the national office’s role was in relation to the local chapters, including in making that change. The senior program manager explained that one of the main things was that the national office was responsible for was international fundraising and needed to ensure that “Los Pipitos, as an organization, is one” and had only one “legal personality.” Her role was to represent Los Pipitos to international donors, secure those funds, and then ensure that the local chapters were trained in how to implement those funded projects properly. Los Pipitos had apparently been very successful at foreign funding. She described their success: “For example, UNICEF, Save the Children, German cooperation, Holland. . .” I then asked what the current funding from those international organizations was for, and she proceeded to talk explicitly about new funding for human-rights advocacy: They are financing us according to their priorities. For example, UNICEF’s is defending the rights of children, it is the same with Save the Children. They have asked us to work much more on the part of awareness-raising, not only with families [of children with disabilities], but with the whole society. There are many components of the projects that we are involved in that they are asking that from us, around awareness and acceptance of the rights of persons with disabilities. For example, UNICEF puts a lot of emphasis on campaigning for inclusive education. . . Such campaigns are made with funds, like UNICEF. And, yes, depending on the profile of the international agency, we adapt projects so that they will finance us. They are asking more from us around awareness-raising and the rights of persons with disabilities.

As she described Los Pipitos’ relationship with donors, I was struck by how willing donors seemingly were to “ask” local civil society to “do more.” It also displayed a great deal of faith the international community had in the best practices they were disseminating to grassroots civil-society organizations and programs they were implementing. I was equally struck with how willingly the national office was to apparently reward the donors’ faith, who seemingly only needed to ask. I was reminded of the New Testament’s Matthew 7:7: “Ask, and it shall be given you; seek, and you shall find; knock, and it shall be opened unto you.” Money opens many doors. It seemed to be an effective method of conversion, but my last question was how that money then might have flowed out to local chapters like Segovia’s. She explained that local chapters were generally responsible for their own fundraising, but the national office would sometimes give them funding in order to implement national projects. Before I left, the senior program manager dug around her desk and produced a printed copy of the national office’s new Plan Estratégico (Strategic Plan) and a small booklet explaining Los Pipitos. On the return bus trip to Segovia, I began to read the strategic plan, spending a few moments looking at its cover, which featured a photograph of parents and children with disabilities marching en masse down a Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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street carrying Los Pipitos signs and banners. In that photo, they were all walking in “one direction” and engaged in advocacy. One of the first bullet points of the strategic plan was to “Consolidate the organization of the Chapters of the Association, define and promote a chapter management model, and increase their capacity for local advocacy.” This point interested me because it was explicitly about creating a uniform structure – consolidate the organization, promote a chapter management model – but also doing the restructuring in the service of local advocacy. It was a clear statement about disseminating new organizational norms across the network. A subsequent point in the strategic plan defined what “local advocacy” was to be: “Fight for the equality of opportunities and respect for human rights,” and “Ensure that the population is aware of the rights of persons with disabilities and assumes an attitude to make those rights a reality by holding the state responsible to implement policies, programs, and services.” Again, the CRPD’s civil-society mandate had made its way into the organizational plan. UNESCO and the dozens of other international NGOs, such as HI and CBM, would have been proud to see their best-practice guidelines so closely reproduced in the strategic plan. I then turned to the small booklet, which included an organizational chart showing the management hierarchy of Los Pipitos. The National Directors’ Council in Managua was on top and the municipal chapters, such as Segovia’s, were below.

locking the locals out Within a few months, the members of Los Pipitos in Segovia would learn what the organizational hierarchy meant for them. At the beginning of February, 2012, I got up one Monday morning and walked the length of Segovia’s main street, past the statue of Sandino and across the highway to where Los Pipitos sat at the entrance to town. To my surprise, the gates of the complex were chained shut. The night watchman, an old man, with a seemingly older rifle, came out from where he had been sitting under the porch to greet me. We knew each other. I asked what was going on, thinking that today must have been a holiday that I was unaware of, or there was some other mistake on my part. He shook his head: “No. No holiday. Normally it should be open.” I asked: “Why not?” He shook his head some more, saying he did not know why they were closed, but he said, slowing down for emphasis, that he was under “strict order from the national office not to let anyone in.” The Los Pipitos chapter in Segovia would remain chained shut for the next three weeks. It took me several days of visiting members of Los Pipitos in Segovia to learn what had happened. Some parents and youth were just as confused as I was, but others, however, described a much more complex story of “a very severe conflict” between the local board of Segovia’s chapter and the national office. I asked what it was about, but no one seemed to know, beyond each wanting to take Segovia in a Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

Locking the Locals Out

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different direction. This dispute, however, had finally been brought to a head the week before, causing the national office to announce that it was dissolving Segovia’s local junta (board) and firing all of the professional staff, including the executive director. Upon hearing about this, the Los Pipitos parents in Segovia became alarmed and attempted to organize a chapter meeting in the Youth Center’s auditorium over the weekend in order to pass a protest vote. They had not been consulted or even notified about the national office’s unilateral decision, and sought to clearly vocalize that this intervention was unacceptable. In response, the national office ordered the lock down of the complex (i.e. chained gate and night watchman) to prevent the local meeting from taking place. This sent a clear message to the parents, who numbered in the dozens and dozens. Their input was not wanted. I attempted to confirm this extraordinary story of events regarding the sudden closing of the Segovia chapter with my contact at the national office in Managua. She was aware of the conflict, but offered no detailed explanation. Instead, she explained: “Yes, I know there is a problem, but I still do not understand its magnitude nor what exactly it is. . .And, I think out there [Segovia], and I’m being honest, were not handling it 100 percent but from what I can see, there is a group of parents on the board who do not want to delegate power. And, you know, with power – any power – damages can be made.” I wondered who they were meant to delegate power to? The model of solidaridad was about “people power.” In this case, the “people” would be the local parents and youth with disabilities at the grassroots in Segovia. That seemed to be what they were being asked to give up. I ended my conversation with the project manager at the national office in the same way I had ended my conversations with the local members, by asking “What’s next?” In her case, as with the local members, the answer was the same: “I don’t know.” Over the next several weeks, I asked around Segovia in an attempt to learn more about what was going on, often running into parents, volunteers, and youth in the street. Many of the parents, tearfully, spoke about how important Los Pipitos had been in their lives and their children’s. Several talked about all the “sacrifices” they had made to build up the program, now feeling it had all been wasted, given that the complex had been shut down without warning or good reason. They also explained that their children now had no place to go, which was verified as I noticed several of the Los Pipitos youth sitting at home in doorways or wandering alone around town. During many of these conversations, parents confided to me that they did not know what to do or what it all meant. I also ran into several volunteers and community members, who were equally upset. At that time, I was renting a spare room in the home of a middle-class family in Segovia. The mother and adult daughter brought up Los Pipitos several times as we chatted about happenings around town. The mother was adamant and angry when she explained: “Every year, we donate a little bit – the little we can – to Los Pipitos because of all the good it has been doing.” The mother, a secondary-school teacher, went on: “I have seen it, I have had Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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students with mental disabilities in my classroom, but I teach sixty and could not give them the necessary attention. I told their parents: ‘Take them to Los Pipitos because there they will learn!’ and they do and I have met these youth and see they are happy and learn so much, learned what I could not have taught them. This year, though, I will not give to Los Pipitos. No!” In this way, the parents and the larger community not only were shut out, but felt cut off from an organization they believed in and had supported. During many of these conversations, parents confided to me that they did not know what to do. Hallett (2010) speaks about “epistemic distress” resulting in a school as a new regime of “accountability” is forced upon them from the top down. Teachers no longer understood what the goal of education was or how they fitted in within the larger picture of promoting their students’ learning. Parents, volunteers, donors, and, the youth with disabilities themselves, were in distress as they questioned the meaning of Los Pipitos in Segovia and their [past] involvement with it.

you need to fight for your right! One month later the Los Pipitos national office in Managua appointed a new local executive director for the Segovia chapter. When she arrived in town, the gates to the complex were unlocked, but none of the activities resumed. I went to meet her, walking past the night watchman into an empty, almost eerily silent yard. There were no volunteers, staff, or children with disabilities. I found Julia sitting alone in the executive director’s office, with no one else anywhere to be found, and introduced myself. Through that initial meeting, I learned that she had been hired by the Los Pipitos national office to run things in Segovia. I also learned that she had no prior experience with Los Pipitos, children, disability, or Segovia. Instead, she had been the executive director of a women’s rights advocacy group based in Managua. She had also worked as a trainer and consultant for US Peace Corps and the US. Agency for International Development. It was clear she was used to working with international donors and implementing rights-advocacy campaigns. I asked her if she was worried about not having a background in disability and she said no, it posed no problem at all because she had many years of experience in human rights through her work with women and, in her words, “teaching them a new way.” And, besides, she explained, she was in daily phone contact with the national Los Pipitos office, which was helping her in her new role. I also learned that she would not be reopening the Youth Center or other programs, but was instead going to be implementing a new initiative – a human-rights awareness project. The first event of this program took place two weeks later, in early April. By that time, Julia had hired two trainers, also from Managua, to facilitate a human-rights workshop series for young persons with disabilities. I spoke to Julia beforehand, in order to find out what it would be about. She explained it was going to be an “exchange of experiences” about work so that young people with disabilities could Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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learn about the common experiences they shared. It was intended to raise their consciousness. When I arrived at the Los Pipitos auditorium that morning, it was buzzing with excitement. There were close to thirty young persons with disabilities there, many of whom had been regular participants at the Youth Center and had not seen each other since it had shut down. Other participants were youth with disabilities invited from other local organizations in Segovia’s disability-rights coalition. They represented the local associations for the deaf, blind, and mobility disabled. The facilitators called things to order, asking that each one take a seat in one of the chairs, which had been arranged in a large circle. The facilitators introduced the workshop as a discussion about the right of employment for persons with disabilities. The first activity was for each member to introduce him or herself, giving their name and their experience with employment. Several across the groups explained that they were working in Segovia’s tobaccoprocessing plants and cigar factories. Many of the Los Pipitos youth explained that they had been employed there at the Center making crafts, furniture, and other things. One then lamented that he had been fired because the workshop was closed. When he said that, everyone turned to the facilitators, who stood in the middle of the circle, stone faced. One explained he had not been “fired,” but the workshops needed to be closed. Two young men from the Association of the Blind explained they packed bread at a bakery. Lastly, a cadre of young women from the Association of the Deaf, who were sitting together, described through a sign-language interpreter that they had been trained in hairdressing at Segovia’s Special School, but had never found a job in that field. Instead, one of the deaf association’s members, who was one of a pair of twins, explained that her sister, who was also deaf but not there that morning, was working in a tobacco-processing plant and that she herself worked in a family-owned bakery and store. The member of the deaf association went on to explain that both of them had looked for hairdressing jobs for more than four years, but never found one. As the last young woman was finishing up, Julia stepped into the circle from where she had been watching in the wings. She turned and began to directly address the young deaf woman, who had stated that she had been looking for a hairdressing job for more than four years and launched into a pep talk. With great emotion, Julia began: “You need to fight for equality! You need to feel it in your heart and your blood. You need confidence to work! You need the motivation. You need to fight day by day. You need to tell the government of your right!” Julia then took a breath and pivoted to address the rest of the youth, who had been watching in confusion. “These are powerful stories you have told. You need to demand from society your insertion into the world of work. You need a clear vision of your life project. This is your right.” She then began to explain that all of them had been denied their rights, citing examples from each of their introductions, pointing to one and saying: “Do you want to work at a bakery? No! You have a right to be anything – a medical Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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doctor, a lawyer, a teacher.” To another, she said: “I have seen the tobacco plants! It is horrible work! No one should want to work there.” She went on, explaining to them that all had been denied their right to work, and ended with the warning that they would all encounter big obstacles but could overcome them if they fought harder. After Julia had finished, the workshop returned to the facilitators, who then brought out a whiteboard and explained the CRPD and their right to be educated for good jobs and employed in any job they wished, just like any other. The majority of the youth sat in complete silence, clearly unsettled by Julia’s admonishment.

thinking badly, dreaming big I interviewed Julia a few days after that initial human-rights workshop and asked her how she thought it went. She announced that she was exasperated with both the parents and youth with disabilities in Segovia.: “The family. The problem is when the families fail to be conscious – to have a vision. . .Look, people with disabilities are going to have a lot of problems, but the primary constraint is their family.” She explained that the youth at the workshop had been taught not to believe in themselves by their families, therefore there was little she could have done differently. Of course, Julia explained, others lacked consciousness as well, such as employers, whom she believed would not hire persons with disabilities despite legal reforms. But, in her opinion, it was the “bad thinking” of people with disabilities that was their own worst enemy. For that reason, she believed the youth were refusing to recognize the discrimination they were experiencing and, in turn, refusing to claim their rights. It struck me that in her assessment, the people – the people of poder del pueblo (people power) – had suddenly moved from being the strength sustaining Los Pipitos to the barrier to it achieving its new goal of empowering persons with disabilities with human rights. The refusal of the youth to claim their rights became a theme in Julia’s analysis whenever I stopped in her office over the next several weeks. After the initial humanrights workshop, she modified the training to focus on both the right to work and education and on improving the youths’ self-esteem. Following another workshop, where youth were invited to describe their “dream job,” she explained her disappointment that none were willing to “dream big,” complaining to me that the only job that they could seemingly come up with – to work in a tobacco factory – was without “value” (valor). I wondered if Julia realized that tobacco factories in Segovia were by far the city’s biggest employers, one of the few sites of formal work, which meant that it provided steady pay and real benefits, such as contributions toward retirement. They were also central to a program the Association of the Blind was implementing (discussed in Chapter 6) to promote inclusive employment in Segovia by placing persons with disabilities in jobs throughout the city. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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taking it to the streets In addition to the human rights/self-esteem workshops for the youth, Julia began a human-rights campaign directed at the general public. This included hiring a car with speakers on the roof that drove through Segovia’s streets broadcasting a recording that declared: “Persons with disabilities have equal human rights,” followed by a short explanation regarding Nicaragua being a states-party to the CRPD. But the most important activity in this regard was a human-rights march. At the end of one of the weekly employment workshops, we were told the next week we would be gathering in a city park by Segovia’s library. We were told we would start there and march to the City Hall, which was about five blocks away, where we would demand that the mayor begin to “respect the rights of persons with disabilities.” Julia explained that it was very important that we be there (because we would be joined by special visitors from Managua). We were not to be late. The Los Pipitos bus would ensure this by picking youth up from their homes that morning. The next week we gathered in the park for the march. Despite the bus being sent out, there were only about a dozen youth, which was representative of the dwindling number of participants attending the human-rights workshops since the initial “exchange of experience.” No parents were present. Instead, there were the two workshop facilitators, Julia, and four guests, who were well-dressed, middle-aged women from Managua. Julia stood with them as the workshop facilitators tried to keep the young people from leaving the small corner of the park surrounding the library that we had gathered in. I said hello to Julia and introduced myself to the guests standing close to her. Julia was explaining to them that many of the parents in Segovia must have been preventing their children with disabilities from attending because they did not understand the importance of “fighting” (luchar) for their rights. This must have been an explanation as to why there were just twelve young people who had come that morning, despite the bus having presumably gone to all of the Los Pipitos youth’s homes. The guests, who were listening to Julia with very grave looks on their faces, turned out to be board members from the Los Pipitos national office in Managua. Once the facilitators had gathered the youth in a semicircle around them, one stood up on a park bench and began to explain to the youth that they would each need to carry a placard. The other, who stood by a pile of poster boards nailed to meter-long staffs, began to hand them out to the confused looking youth. Each placard was covered with a slogan, such as “We are equals” and “Respect our rights.” I was given one too. Julia suggested they wait ten minutes longer for others to join. We waited, with the sun beginning to blaze above. The placards began to come down and youths dropped them on the ground, causing the facilitators to pick them up and admonish the Los Pipitos youth to keep them raised. Finally, after no one else joined, we began to march. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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Slowly, in part because one young person was using a wheelchair and others had mobility disabilities, we began to snake up the side streets that led to Segovia’s Central Plaza. As the streets were primarily residential and it was now late morning, they were largely empty. A few passers-by stopped on the sidewalks to watch us go by, one visibly mouthing the slogans on the placards with a confused look on her face. The four board members walked about a half block behind us, supervising our progress. Despite our slow pace, we reached the center of town within fifteen minutes. There, we walked through the Central Plaza park, past vendors selling out of little shacks and around shoe-shine boys, and took a position on the sidewalk directly facing Segovia’s City Hall. The facilitators began to model what the rest were supposed to be doing by holding their placards high above their heads. They began chanting: “La discapacidad es parte de la diversidad humana, Que la inclusión sea una realidad!” (“Disability is part of human diversity, make inclusion a reality now!”). With the plaza largely abandoned and the front of the City Hall primarily windowless, it was hard to tell if anyone saw us. A few onlookers slowed down to read our signs, but no one across the street at the City Hall took notice. After about five minutes, the signs began to fell back down to the ground and the youth sought shade or more interesting things to do in the interior of the park. The facilitators, Julia, and the national-board members huddled in grave conversation. After half an hour, the Los Pipitos bus came to pick us up.

the bylaws bite back After months of estrangement, I began to see Los Pipitos parents visiting the Youth Center on a more regular basis. They began to come in clusters of three or four, demanding meetings with Julia. I was never invited to attend one, but could see the intensity of the discussions through the open door of the director’s office. Julia sat at one end of the table and the mothers sat together, shoulder-to-shoulder, addressing her from the other, often passing papers back and forth. I finally asked one of the parents whom I knew what was going on. She took out a carefully folded stack of papers from a notebook she was carrying and flipped through until she found a passage now familiar with her. The papers were the Los Pipitos bylaws. The passage, she explained, stated that every chapter was to be ran by a locally elected board. She explained that it was the parents’ right to elect a new board. The old one had been dissolved, thus a new one had to be put in place. After several weeks of resistance, Julia finally submitted to the parents’ advocacy. Elections would be held the next week. It was now mid-May, many months after the Managua office had kicked the old board out. The next week, there were more people in the auditorium at the Los Pipitos complex on the morning of the elections than I had seen since the Youth Center had closed six months before. I counted seventy-seven members plus Julia, the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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workshop facilitators, and the four national-board members from Managua, whom I had not seen in town since their supervision of the disability-rights march a few weeks before. Julia was looking nervous in the corner when I came over to say hello. The auditorium was filled with rows of folding chairs facing several tables pushed together up front where the national-board members were seated. In the middle of that long table was a large cardboard ballot box covered in white paper. Around the hall, there were poster papers hung up with inspirational sayings. I asked Julia where they had come from and she explained she had put them up because she wanted everything to be tranquilo (calm/no problems). One poster read: “Hoy sere dueña de mis emociones, y sabre que todo lo que la vida me ofrece es un oportunidad para ser feliz.” (Today I will be the owner of my emotions, and understand that everything life offers me is an opportunity to be happy). Another stated: “Si quieres truinfar, no te quedes mirando la escalera, Empeza a subir Escalon por Escalon” (“If you want to triumph, do not stay staring at the stairs, but begin to climb step by step.”) I was not sure what the intention of these inspirational sayings was, but they seemed oriented toward getting the members of Los Pipitos to “move forward” in some way and to accept the outcome of the vote, whatever it may be. Julia seemed to be anticipating “turmoil,” something Hallett (2010) found in his school when the new institutions associated with “accountability” were forcefully recoupled with classroom practices. In Hallett’s account, the attempts to make the myth incarnate resulted in factions, as new, young teachers were moved into the school in an effort to displace the old and their visions of education that had now fallen out of favor of the new education regime. Julia, however, would soon learn that she would be a faction of one and would have to be the person who needed to learn to accept the outcome, because the parents in Segovia did not want to “move forward” with the new direction she had taken their chapter. The meeting was called to order as the national Vice President of Los Pipitos introduced herself and the other board members. She explained that the objective of the meeting was to have elections because Los Pipitos was “democratic and participatory.” She then stated that, as an association, their mission was to “be a force for the respect of the rights of children with disabilities.” Following that initial opening, everyone stood, joined hands, and prayed the Our Father and then the Hail Mary aloud in unison. Then they sang the Nicaraguan National Anthem, followed by a song about Los Pipitos. Next, there was a call for nominations. The old (i.e. from the board dissolved six months before) president was nominated. She stood up as other parents, one by one, made emotional testimonials regarding her character, leadership qualities, and, most important, commitment to children with disabilities as a mother. A nationalboard member then called for additional nominations. The room was silent. They called again, waited, and called again. Julia looked furtive in the corner. The old president would be running, uncontested, for her old position. Julia began to look Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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furtive in the corner. Next came the nomination for the vice president. Again, the old vice president was nominated, uncontested. In fact, only the position of treasurer was contested, with four candidates nominated. Finally, the lid from the cardboard ballot box was taken off and the box was held up and shown to be completely empty, much like a magician displays his top hat before a trick. The box was then returned to its position and each row began to come up and were handed a ballot which they were then able to fill out in privacy at a corner table and then drop off into the ballot box before returning to their seats. As the rows filed up, everyone sat in silence. It was a solemn occasion. After the voting was completed, the national board counted each ballot out aloud. About halfway through, the solemnity began to break. It was becoming increasingly clear that everyone from the prior board – the one that had been unilaterally dissolved by the national office – was being unanimously reelected, with the exception of the treasurer. Instead, the old treasurer was voted back with a landslide, but not unanimous, vote. At the end of the counting, the room erupted with applause, with the exception of the national-board members and Julia. The national-board members abruptly stood up and walked out, following Julia, who had just made a quick exit and was heading down the hall to her office.

the board gets back to basics The next week I sat down with the newly reelected “old” board. They were excited to be back after their several months of involuntary hiatus. I asked them about the future. The president replied: Our future vision is that the parents are really, in reality, integrated in Los Pipitos [in Segovia]. That they take ownership over all the activities done by Los Pipitos. That’s what we want right now as the Chapter junta, that they [the parents] take ownership, so that we are 100 percent independent.

She followed with an analysis of the past ten years, where Los Pipitos-Segovia had seemingly gotten too big by benefiting from international donors and hiring professionals to do the work parents had once done. The result, in the board’s view, was that the local chapter in Segovia had moved away from their original model and no longer relied on parents and the larger community bringing forth their knowledge, labor, resources, and other forms of participation. In the board’s opinion, that unmooring from relying on “people’s power” had allowed the chapter to get away from them and allowed the national office to implement its recent takeover. Julia’s professionalism and seeming determination to run Los Pipitos independently from the parents’ and larger community’s help was, among other things, a reason why they had decided to get rid of her. “We no longer want an executive director anymore. Julia was very professional. She is a very intelligent woman. But she was not supportive of us [the parents]. Our solidaridad comes from us being volunteers. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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For her, it [solidaridad] is not there, because she is a professional. She did it for a high salary. Not as a volunteer.” Running grassroots organizations for money rather than as an act of service represented a fundamental disconnect between Segovia’s civic culture and Julia’s practices. At this point in the conversation, I felt it was important to understand what solidaridad meant to the board members, especially because they were using it as an explicit justification for describing themselves as parents and drawing a contrast with themselves and Julia. I simply asked: “What does solidaridad mean?” Another board member, the treasurer, chimed in: We want to be the organization that the whole world looks to for help, because they can see our strength, stability, and solidaridad. Good solidaridad is part of our society. You know, in this association, I always say it isn’t a misfortune, but a blessing to have a child with disabilities. We have a son, but we don’t have resources, so we have solidaridad. But we don’t need to beg, because we can get resources. We can find people to be in solidaridad with us. We need a teacher, a speech pathologist. Those are resources we do not have. But we can get them through solidaridad. We can call them to be in solidaridad with us.

I followed up to ask: “What is that going to mean in practice? How does that change your objectives?” This resulted in the board’s secretary reiterating their commitment to relying on their members’ willingness to actively participate in providing services and support. At this time, our objective is all about participation – participation of the parents – in the association. We need to actively organize ourselves and run all the tasks and activities here at Los Pipitos [in Segovia]. We want to reactivate the workshops – piñata, crafts, bags, candles, agriculture, carpentry. And we are opening a bakery. . . What do we want with a bakery? It’s part of the labor education for the youth. They will learn to bake, pack, sell. But it will be with the parents. And it will provide work for many of the young people graduating from the school, here at the Youth Center.

The baking project was already well advanced. The board president had already spoken with local grocery stores and other vendors who were enthusiastic about stocking locally produced Los Pipitos bread on their shelves. She felt that a Los Pipitos-branded bread would have a “good image” and it would be easy because they kitchen, attached to the Youth Center auditorium, already had the necessary equipment. Another project was to use the workshop to make wooden cigar boxes for a local exporter. A board member explained: “A Cuban came here the other day to see our [carpentry] workshop. He wanted to know if we could make 8,000 boxes a week. I spoke to him and explained we are Los Pipitos, and do not have enough equipment, but if he helps us in solidaridad and gives us the resources to do the work, then we could do it. Out of solidardiad, he said yes. He’d give us the resources, Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:49, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.003

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plus a percentage of his profits.” Each of these examples – the bakery and the cigar boxes – exemplified the way in which the new leadership of Los Pipitos believed that they could rely on the broader community to support their efforts.

recoupling civil society and solidaridad Just as the international disability-rights NGOs and the national Los Pipitos office had sought to tightly couple Segovia’s chapter with the symbolic rhetoric of rights and formal structure of being a civil-society organization representing persons with disabilities with rights-advocacy practices, now the mothers on the local board were discussing their plans to recouple Los Pipitos as a solidaridad organization with the practices of solidaridad – mobilizing the community to provide social support and services. One of the key differences between the two attempts at recoupling were that one was top-down and the other was bottom-up. The rhetoric of rights and advocacy had come from the CRPD and the dissemination of its civil-society mandate through international donors and NGOs and then their partnership with the national Los Pipitos office in Managua. Not only were these changes done without the consultation of the local community, but implemented despite them. The new board’s plan, however, was obviously bottom-up. They were the local community. They were also determined to see the local community would be in charge, meaning that they could maintain their independence from donors, professionals, and others by relying solely on the community’s participation. This pursuit of independence was, at its root, a strategy for firmly moving the Los Pipitos chapter in Segovia out from being in the crossroads (or middle of a Venn diagram) where the two institutional environments overlapped – the international disability movement and Nicaraguan solidaridad – and solely into the Nicaraguan solidaridad field. As such, the parents’ new plans contained no language or practices reflective of the new norms of disability-rights advocacy. It was a clear loss for all of those international activists who wanted a world free from “pretty little programs.” In the next chapter, however, I will show other top-down efforts that did result in two local disabled persons’ organizations in Segovia that were reflections of the CRPD and its civil-society mandate. Unfortunately, it is unclear if the organizations are a victory if the CRPD itself is meant to advance the participation of persons with disabilities in society and the job of DPOs is to represent their voice.

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4 Grassroots Members Walking and Rolling Away

empty seats It was May, and the handful of members who had shown up for the Association of the Physically and Motorly Disabled’s monthly meeting were running out of excuses. The fifteen of us, including the local chapter’s president, Alfonso, vice president Carla, and me, sat in a semicircle in the City Hall’s main auditorium. Bright sun filtered in through the door, lighting up the room like it had on prior Sundays when we had similarly sat waiting – hoping – that more of ADIFIM’s members would show up. Soon the rainy season would begin, which could mean even fewer participants, given that the streets were often flooded. It would also mean the potential for the electricity going out, which I often found far better than having to rely on the single tube of florescent lighting that hung down from the auditorium’s twenty-foot-high ceiling. Sometimes it worked, sometimes not. And even when it did work, it flickered like a strobe light, making many of us feel nauseous and overly eager for the monthly meeting to come to a quick end. Now, however, with the dry season and sun, I was enjoying my time sitting and waiting by studying the colorful mural that covered the back wall, behind the large table where the City Council sat when they publicly met during the week. The Cathedral’s church bell began to ring, indicating that we had been sitting there surrounded by empty chairs long enough for Segovia’s early morning Catholics to attend mass, be replaced by mid-morning Catholics, who were now soon themselves to be replaced by the late-morning faithful who were being called to worship. This was, perhaps, the fifth or sixth time in a row that we had done this – sit together for hours waiting for more of ADIFIM’s members to show up. This time, however, their absence could not be blamed on Christmas or New Year’s or Easter, or the other excuses we had been making on others’ behalf. Nor, since it was still the dry season, could we blame the torrential rains that would soon be coming. As

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I contemplated these matters, I continued to stare at the wall behind Alfonso’s head. The giant painting commemorated the Sandinista Revolution. The mural depicted the Central Plaza, just behind us from where we sat in the City Hall. In its primivista (“primitive”) style, the mural displayed a street battle in colorful two-dimensionality. To one side of the plaza, near Segovia’s community center, a rag-tag group of Sandinista revolutionaries stood bravely firing their rifles across the park at an oncoming phalanx of National Guardsmen or Contras. Between the two armies were dead and bleeding citizens lying flat across the ground. Some were depicted as children, mothers, and other townsfolk. Perhaps the most dramatic character in the scene was an old man who was depicted with his arms raised, one of which held a cane, and with his mouth open in a scream, as he was being trampled under the boots of the marching Contra army. Behind the Sandinistas, who were clearly defending Segovia, was a giant, god-like portrait of Sandino and many of the Sandinistas’ secular saints and early martyrs, such as Carlos Fonseca and Marcos Contreras. Their portraits were backed by yellow rays, making them shine like the sun. On the opposite side of the wall, overseeing his Guardsmen, was the ghostly, gray outline of the dictator Somoza, complemented by an American eagle signifying the United States’ support of his regime and the subsequent C.I.A. backing of the Contra War. It made me think about Nicaragua and Segovia’s continuing history as a constant object of Western intervention. It was also a demonstration of the quasi-religious faith many Segovians had in the power of solidaridad. As I sat looking at the sullen faces of those occupying a smattering of chairs before me, and at the vibrant mural above, I thought with wonder over the past four years. In that time, I had observed ADIFIM go from one of Segovia’s most active DPOs, with new members showing up at every meeting, to now one of Segovia’s least active DPOs. Only the Women with Disabilities Association, which had suspended meetings entirely a few months before, had lost more members. At one time, the cavernous meeting space in the City Hall had been needed by ADIFIM as other venues had become too small. Now it felt hollow.

no quorum, no question The reason why we were sitting and waiting that morning was because ADIFIM needed enough members in attendance so that they could have a quorum for a vote. Back in December, ADIFIM’s bylaws had directed that the association needed to either elect a new board or reaffirm the old one. Those same bylaws also clearly stated that for the vote to be valid at least half the members plus one were required to participate. According to the official membership list, however, there were almost seventy people on the books, requiring more than thirty to show up for the vote. Today, we had fifteen. The previous months we had a dozen or less and at one meeting we had just me, Alfonso, Marta, and one other in attendance. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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For the past five months the members present during the monthly Sunday morning meetings had been excusing the absentee members by pointing to the holidays and all the weekend commitments that they would make. Now, however, Alfonso was no longer attributing things to the calendar, but directly blaming the absence on the members themselves. In answer to Carla’s seemingly rhetorical question “Where is everyone?”, Alfonso swung his wheelchair toward her, cleared his throat and began to explain: “It is a problem in the culture. Nicas only want the beneficios [benefits], not their rights. They don’t understand.” The others nodded, perhaps without listening, in agreement. I had heard this line from Alfonso before. Many times, I had sat with him in the little office that the city had given ADIFIM in a building close to my house. Alfonso would explain the ways in which Nicaraguans with disabilities did not understand their human rights and were not committed to learning the law or advancing the Convention. According to Alfonso, the only thing they thought about was themselves and what they could get, such as disability pensions or auxiliares (“aids,” such as wheelchairs or crutches). As such, they were stuck in a medical mindset, believing that they needed some doctor to “fix” them, rather than recognizing that it was not them but the society that needed to change. During these mini-lectures, I often felt Alfonso was reciting directly out of an Introduction to Disability Studies textbook: the contrast between the “medical model” of disability and the “social model” of disability is usually on page one. Alfonso, of course, knew them from the dozens of international disability-rights training courses he had attended. From his perspective, anyone who did not put legal rights in front of material needs did not see the bigger picture and simply did not understand the importance of the social change that ADIFIM’s mission statement directed them toward. Of course, what Alfonso was saying was somewhat of a contradiction. Three years earlier, when ADIFIM was new and growing, I had sat in on an early meeting that was taking place in a classroom at a public-health center a few blocks away. That Sunday morning during the summer of 2009, when there were thirty or forty attendees, there were also half a dozen Segovians with disabilities who had heard about ADIFIM and had come to check the organization out. During that meeting, Alfonso told a potential recruit, who had been brought by a friend, about the Convention holding a copy up in his hand. “You may need many things: a job, an education, new crutches. . .You have a right to those things. The law gives us those things. But if you don’t know the law, you cannot get them. Knowledge is power!” I would later hear that exact phrase – “Knowledge is power” – again during 2011 disability-rights training funded by yet another international NGO seeking to “raise awareness” and “develop capacity” among Segovia’s DPOs. In this case, Alfonso was saying then that knowing the law would get people concrete beneficios, something he was now upset about having become too much of a focus among ADIFIM’s absentee members. The recruitment pitch had worked then, but after Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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more than two years of hearing about the law, but gaining few benefits in return, those once-new recruits were now absentee members. After no one responded to Alfonso’s explanation as to why no one had come that morning, he began again, in a different tone. Now he was offering a solution to the low turn-out and began to outline a plan to purge the ranks. His proposal was that he begin the next week to visit all of the members still on the books. In the past he had done so, pressing them to come and renew their commitment to the association and the disability-rights movement. But this time, rather than imploring them to participate, he would be asking them to officially renounce their membership to ADIFIM, allowing Alfonso to strike them from the official rolls. His plan was to reduce the members registered by the group to thirty, a reduction of more than half. He was fairly confident that with a lower number, those of us there plus a couple more would be able to achieve a quorum, meaning that ADIFIM would need just fifteen to attend a meeting and make the board vote to fulfill the obligation outlined by the bylaws. In response to quizzical looks and the formation of some objections, Alfonso went on to explain that of course ADIFIM would still represent the people who renounced membership. After all, disability rights were for everyone, not just those belonging to the association. That way, he as the local chapter’s president could still speak for Segovians with physical disabilities, and thereby give them a voice in his advocacy. Everyone eventually agreed to this solution. It meant that ADIFIM would be able to continue doing everything it had been doing, but with fewer official members. There was no question that Alfonso and Carla would continue to lead. They had been there since the very beginning, and all the attendees agreed that they had been doing an excellent job keeping ADIFIM focused on its original mission of advancing the law. In effect, it was decided that the organization’s mission and activities had been good; but the people it had signed up as members had been a bad, so they simply needed to purify their ranks.

organized from the outside ADIFIM was one of two DPOs in Segovia that had been initiated by international disability-rights NGOs. ADIFIM began when a Danish disability-rights group called Dansk Handicap Forbund came to Nicaragua in 2008 as part of its global campaign to develop grassroots DPOs around the world to support the UNCRPD. The other organization was Segovia’s Women with Disabilities Organization (ODIFOM), which was also organized by an international NGO, but in its case by HI. HI initiated it because they believed there was a need for communities around the world to not only have DPOs (and DPO coalitions, like CDIS), but specifically women’s DPOs. This was, in part because the Convention on the Rights of Persons Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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with Disabilities recognized the intersection of gender and disability by including an article (Article 6) on women with disabilities. ODIFOM had never grown as large as ADIFIM, but it had similarly experienced problems retaining membership and by the end of 2011 had essentially disbanded with the exception of Fatima, the (last) ODIFOM president, who continued to attend Segovia’s disability- rights-advocacy coalition meetings. Despite her organization having ceased meeting, registering members, or even electing a board, the other DPOs in CDIS asked Fatima to continue to come because they feared the Disability Rights Fund would sanction them on account of their grant specifically requiring all seven of Segovia’s DPOs to participate. ODIFOM will be discussed in detail later on in this chapter, including the reason why it took a different route from ADIFIM’s decision to continue operating with a smaller base. In 2008, when ADIFIM in Segovia was created, the global organizational environment for DPOs was perhaps at its height in terms of its active dissemination for the rights-advocacy model. Organizations such as DHF were part of a concerted effort around the world to ensure every community in the world had DPOs that fit the mold according to Articles 4 and 33 of the UNCRPD. The imprint (Stinchcombe 1965) of that environment on the organization is clearly evidenced in ADIFIM’s mission statement, which is explicit in regards to human-rights advocacy. The mission explains ADIFIM’s purpose as “to develop actions geared towards compliance with human rights by implementing technical capacity strengthening processes for local leaders, raising awareness, disseminating information to the population at large, exchanging experiences and doing advocacy work leading to reforms of laws that affect the rights of persons with a disability.” Unlike the other local groups that were brought together by HI for Segovia’s CDIS coalition, ADIFIM (and ODIFOM) was newly created, with no prior organizational history. The vast majority of the persons with disabilities who participated in the 2008 workshop convened by Dansk Handicap Forbund in Segovia were locally, and mostly younger, persons with disabilities who were not members of Segovia’s other disability associations such as Los Pipitos or the two disabled veterans’ groups, the Organization of Disabled Revolutionaries or the Nicaraguan Association of the Disabled Resistance. Both Alfonso and Carla, who were in their twenties at that time, were participants in the first workshop. Neither had been involved in a civil-society association before, including any of the other disability associations. Dansk Handicap Forbund’s mission, which obviously predates the UNCRPD, is typical of Western DPOs’ emphasis on advocacy. DHF’s mission, to “strengthen the community of persons with disability, to get political influence for persons with disability, and to aim for a society with equal rights and possibilities for everyone,” was originally written by and for Danes with disabilities in Denmark, but was now being applied to its global work to ensure communities around the world had DPOs focused on rights, just like they were in Denmark. To wit, the effort in Segovia was Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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part of DHF’s UNIDAD (“unity”) campaign in Nicaragua and Honduras “to strengthen the ability of the [local disability] organisations to work for the rights of PWPDs [persons with physical disabilities]” (Dansk Handicap Forbund 2015). DHF has the same project under a different name at the national and regional level in other countries in Latin America and sub-Saharan Africa). Given its roots in DHF’s UNIDAD campaign, ADIFIM might better be conceptualized as a satellite, franchise, or colony of DHF (or the collective international disability-rights movement) rather than a local, independent, bottom-up initiative. The workshop participants, following a heavy regimen of disability-rights awareness raising, were tasked with the job of creating the local chapter and given an initial grant once they had developed their mission statement and a plan for putting it into action by educating themselves on disability rights and engaging in legal advocacy. The UNIDAD campaign to strengthen local DPO rights advocacy around the world is just one of many similar initiatives. In Segovia alone, the Disability Rights Fund would soon follow DHF to become the primary funder of the CDIS coalition in accordance with their grant guidelines to “strengthen local stakeholders who can hold governments accountable for fulfilling the rights of persons with disabilities.” HI, also in Segovia, was initiating ODIFOM and the CDIS coalition, at the same time that DHF was organizing ADIFIM as part of their campaign to “strengthen [DPO] advocacy to influence social change.” Outside of Nicaragua, groups such as the ABILIS Foundation of Finland were making “grants to carefully chosen DPOs in developing countries in order to strengthen the capacity of disabled peoples organizations in the Global South so that they are better able to advocate for their Human Rights as articulated by the Convention on the Rights of Persons with Disabilities (CRPD)” in places like Ethiopia, Nepal, and Ukraine (ABILIS 2016) and Action on Disability and Development International, based in the UK, was helping “organsiations of disability activists [to] build links with each other and powerholders to tackle barriers to disability inclusion” by influencing governments in countries such as Sudan and Bangladesh (ADD International 2018a). The list goes on.

manufacturing strong dpos Each of these international initiatives is meant to strengthen local DPOs. The definition of “strength,” however, is global, even though the DPOs themselves work within specific contexts and represent local communities. As such, it creates the possibility for DPOs to be “strong” in the eyes of international NGOs and global DPO networks, yet “weak” (or ineffective) in the eyes of their local members and within the local environment. An HI policy paper on supporting DPOs argues that the UNCPRD is a “roadmap for DPOs” that “calls for all stakeholders to play their role to make these rights a reality” (Geiser et al. 2011: 16). The policy paper goes on to state that “HI has Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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observed that in most developing countries there is a discrepancy between the important role that DPOs have to play and the limited opportunities, resources and capacities they have had to fulfill their role” (23) as a result of organization and technical weaknesses, lack of awareness and knowledge of the “new conceptual models of disability developed at the international level,” inexperience as humanrights monitors, and lack of actions that empower individual members (23–64). In this way, any DPO that takes a different path or acts according to a different organizational logic than the one outlined in the Convention is deemed weak, unaware, inexperienced, and lacking according to HI. I believe it is extremely significant that HI’s policy does not argue that strength is drawn from an organization being responsive to its members or reflective of the values of its local community; there is no acknowledgment that countries and cultures around the world have different forms of civic participation or even different political systems that may be more or less responsive to advocacy than those in the West. From the view of international NGOs providing technical assistance in the Global South, the role of any and all DPOs and the standard that they must meet is wholly external to the members of the DPOs themselves. In this way, the civil-society mandate of the UNCRPD is transformed into a cookie cutter, intent on stamping out DPOs around the world that fit within the lines drawn by the UNCRPD. What Dansk Handicap Forbund, HI, and so many more are doing is attempting to “manufacture civil society from the outside” (Howell and Pearce 2001: 89). Or, in the case of previously established DPOs, such as Los Pipitos, they are trying to remanufacture those local organizations, revising their mission statements and fundamentally changing their practices, sometimes against the wishes of the actual members and beneficiaries. When there are such strong and well-defined norms in place, any group that looks or acts differently is labeled “deviant.” Local resistance, as such, is seen as a pathological behavior that must be addressed. Furthermore, deviance is interpreted as proof that local groups need even greater intervention, because it is seen as a sign that the members of those organizations lack awareness or have been disempowered by its leadership. Deviance is never interpreted as a sign of local engagement by members in defining their association’s goals or of leaders being responsive to their members or the contexts within which they operate.

knowing laws, passing laws, monitoring laws ADIFIM, which was essentially popped out of a global mold, met the global definition of strength from its very beginning. Every activity it engaged in was tied to the UNCRPD. The whole of its organizational practice was simple: ADIFIM raised its members and the broader Segovian community’s awareness of the law, it advocated for new laws to be passed and old laws to be reformed, and it monitored Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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the implementation of the law by putting together reports that cited violations of the law. Each activity corresponds to the role of DPOs outlined in the UNCRPD. My very first interview with ADIFIM’s leadership took place in 2009, and my first question to Alfonso was a simple one. I asked him: What does ADIFIM do? Without missing a beat, he held up a copy of the UNCRPD, which bled yellow in highlighter ink, and announced: “We study the law.” He then went on to explain that it was his job to ensure that everyone in Segovia, especially persons with disabilities, knew each and every line of (disability) law, including both the Convention and local legislation. Over the years, as I would meet Alfonso in ADIFIM’s small office, the two-room home that he shared with his brothers and their leather working business, or in the street around town, I would get used to seeing pamphlet-sized copies of the Convention and Nicaragua’s disability laws – Law 202 for Prevention, Rehabilitation, and Equity of Opportunities for People with Disabilities (1995) and later Law 763 on the Rights of Persons with Disability (2011) – constantly at his side. The cover of these pamphlets was emblazoned with ADIFIM’s logo followed by the motto: “We must defend our rights” (“Defendemos nuestros derechos”) followed by “with the sponsorship of the Disability Rights Fund” (Con el auspicio del Fondo para los Derechos de las personas con Discapacidad). Alfonso was constantly pulling these brochures out from where he kept them between the cushion and the arm of his wheelchair to read a passage aloud, pass a copy out or, during a free moment, to read it to himself silently, usually with yellow highlighter in hand. In addition to knowing the law, ADIFIM was also engaged in trying to change it. In 2009, ADIFIM in Segovia was part of a national campaign led by FECONORI (Nicaraguan Federation of Associations of Persons with Disabilities) to change Nicaragua’s then current disability law, Law 202, which had been passed in 1995. Because the law’s language was pre-UNCRPD, it was deemed obsolete. Carla, ADIFIM in Segovia’s vice president, explained to me at that time that Law 202 was outdated and in need of “being reformed to reflect the international law – the law of the human rights of people with disabilities [i.e. UNCRPD].” She also explained that once the national law was in compliance with the international law, “we are going to have more legal support and more respect as people with disabilities in relation to education, work, recreation, sports, everything and everyone at all levels!” After Law 202 was indeed replaced by a new disability law, Law 763, however, the law was still deemed inadequate, despite being an almost verbatim copy of the Convention. That was because when it went into effect in 2011, very little changed. Carla and Alfonso again joined the FECONORI coalition’s national campaign to pass yet more laws that would ensure Law 763 was implemented and the rights in it would become a tangible reality. As such, it was Alfonso and Carla who pushed CDIS to make the implementation of Law 763 the focus of their 2012 National Disability Day march by making “Creacion de la estructura para la aplicacion de la Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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Ley 763: Ley de los derechos de las personas con discapacidad Ya!” (“Create the structure for the implementation of Law 763: Law of the rights of persons with disability, Now!”) the motto for their activities that day. As part of the march’s activity, Alfonso chose to use some of ADIFIM’s funds to rent a mobile speaker system consisting of a pickup truck with giant speaker on the back. Alfonso rolled along side of it, his wheelchair pushed by a friend, while he read the Convention and Law 763 over and over again into a microphone, his voice announcing the law, booming over the rest of the marchers and the scattered groups of shopkeepers, customers, and passersby gathered along the side of the road as the marchers passed by. Alfonso punctuated his readings of the law with the march’s motto demanding a structure for its implementation. Even with the prospect of a new national structure of law layered on top of the Convention and Law 763, Alfonso and Carla were not satisfied. They also wanted Segovia’s City Hall to pass a set of local ordinances that would, in their minds, finally solve the problem. ADIFIM had become astute at proposing slates of new ordinances in Segovia, something that Segovia’s mayor was happy to shepherd through City Council meetings. The mayor, affectionately known as Poncho, was a real populist who was constantly out and about in town giving bear hugs and shoulder slaps to everyone he met. He was happy to champion ADIFIM’s cause and support their proposed ordinances, which seemed to be an annual event. In a 2009 interview regarding a new local ordinance that ADIFIM had recently succeeded in proposing and passing, Alfonso explained: “We have come a long way, we have laws here [Segovia] in the Mayor’s Office – the Ordinance for Accessibility – for the city buses, taxis, all that has come through our advocacy.” When I asked him whether it was being implemented, motioning to the road where an ancient, and certainly inaccessible, bus was rumbling by, Alfonso assured me, bringing a militant tone to his voice, that “we [ADIFIM] are going to have an impact because here, they [local government] are afraid of us, because we know the law!” Unfortunately, no accessible bus was ever brought to Segovia during my four years of field work there. Finally, ADIFIM’s organizational practice also included monitoring the implementation of the law by gathering local violacións of the law. They did this by recording rights violations in Segovia and compiling denuncias (“denouncements”), or violation reports, that they would then deliver to the City Hall. One frequent activity was inspecting public buildings. On one occasion, Carla and Alfonso asked to borrow my camera so that they could photograph inaccessible public locales. They took more than a hundred photographs of narrow or blocked sidewalks; curbs without curb-cuts; schools, health, and recreation facilities with narrow entranceways, inaccessible second floors (to my knowledge, there was not a single elevator in operation in Segovia in any private or public building) or bathrooms; and so forth. Selected photos were then printed out and bound together as a report, which they delivered to the local government. They also made a poster of photos that they Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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would display at various public events, such as street fairs during the patronales (patron saint days), under the title “Violations of our rights.”

a meeting is no place for therapy Before ADIFIM had faced the quorum problem, its meetings had followed a typical pattern. First, a few people would arrive at the meeting space around 9:00 a.m., the official start time, and then chat over the course of an hour or so until everyone else had trickled in. Usually, the actual meeting itself did not start until past 10:00. This was typical of Nicaragua, where the official and actual start times of meetings and events were often hours apart. Then, Alfonso would start the official meeting by reading a list of announcements, moving into updates on ADIFIM’s advocacy campaigns, providing a lesson on some aspect of disability law, and then collecting denuncias (denouncements) of local rights violations. The meeting could last well past noon. For the most part, Alfonso’s leadership style was casual and open. He was happy, and even encouraging, to have members interrupt him to introduce their own items to the agenda, with the caveat that the interruption needed to fit within their focus on advancing the law. If the interruption was outside of ADIFIM’s narrow focus on disability rights, then Alfonso would meet it with a short and swift rebuke. In this way, the local meetings ensured that ADIFIM’s practice and mission remained tightly coupled. There was little, if not nothing, that they did as an organization that was not related to the UNCRPD’s civil-society mandate. A meeting in October, 2011, when ADIFIM in Segovia was still able to fill the auditorium, exemplified this determination to stay true to their mission. At 10:30, Alfonso called things to order and began to pass out a newly published copy of Integración, ADIFIM’s biannual newsletter to all of its chapters in Central America. He then began to read aloud the activities that had taken place over the last six months listed in the newsletter, pausing on each one to say whether he or other local members had participated or not. The activities listed included three disability-rights workshops held in Managua, where ADIFIM’s largest chapter and its regional board resided. One workshop was part of a training seminar on the “Right to inclusive education” funded by Action for Disability and Development, a UK-based NGO. Another workshop was organized by the European Union on “Knowing and Guaranteeing Our Rights.” And the last, funded by OXFAM, was on “Lessons learned by disabled persons’ organizations defending our rights.” Alfonso, Carla, and a couple other local members in Segovia had gone to them all. This was no surprise, as since the UNCPD had been passed in 2006, international NGOs and foreign donors had been organizing and funding disability-rights workshops throughout Nicaragua (and the rest of the Global South) on a seemingly constant basis. The newsletter also included an update on ADIFIM’s 2012 Annual Operating Plan for Central America, which included the objective of opening new ADIFIM Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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chapters in Nicaragua where “persons with disabilities were not yet represented,” implementing a new training series for all of the chapter members on “disability law and public policies,” and launching a new “Network of Right Promoters” to coordinate advocacy around the country. When I received my copy of the newsletter, I noticed that “Funded by Dansk Handicap Forbund” was prominently displayed on the cover page and that their “generous support as ADIFIM’s principal funder” was cited in an editorial thanking all of the international donors. There was also a story on international delegations visiting Central America from Action for Disability and Development and the European Union, and a story on an ADIFIM member who was selected to attend international training on disability rights held in Japan. Last, there was a short article on progress organizing a new ADIFIM chapter in Nicaragua’s Mineral Triangle region. As Alfonso was wrapping up his announcements, an older man who had recently begun attending meetings raised his hand. He wanted everyone to know that “the Lion’s Club, in solidaridad with the municipality, will be giving eye exams and new glasses for those in need.” He then began to implore everyone to register now, because there would only be so many spaces. This was typical in Segovia, where either mission groups or local solidaridad associations organized events ranging from free vaccinations to agricultural extension that required some sort of sign-up. People began to ask him questions about the registration process and he began to outline a long, Kafkaesque explanation of how they would need to go to one place to pick up a form so that they could then go to another. As the discussion was beginning to take off into a larger conversation about how uncoordinated these initiatives can be, Alfonso, who had begun to look frustrated, cleared his throat and cut the older man off in mid-sentence, calling things back to order and saying that they had “more important things to do,” including “studying the law.” The older man went silent; it was the last time he came to a meeting. We then began a lesson on the Disability Convention’s Article 9: “Accessibility.” Alfonso read the first part of it aloud: To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia: a) Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces; b) Information, communications and other services, including electronic services and emergency services. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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Alfonso explained that he would be meeting with the City Hall to provide them with a denuncia report on accessibility, so now it was their job to identify all of the public places in Segovia that were violating their right to access. People began raising their hands or simply shouting out a long list of places, which Alfonso dutifully wrote down. As things began to quiet down, a middle-aged woman, who was attending a meeting for the first time, raised her hand and identified the main hospital. Another member interrupted her, to ask: “Where in the hospital?” To which she responded: “The entrance! I cannot get in.” Alfonso stopped writing and looked up, and said “It has a ramp, so what do you mean?” She explained that she was unable to move her wheelchair up the ramp. She was relatively new to using a wheelchair, which she had just acquired after her feet were amputated due to diabetes. She found most of the ramps around Segovia, including the hospital’s, to be too steep for her to navigate. Alfonso told her “Well, you need to learn how to use your wheelchair!” To which she answered with a great deal of enthusiasm in the affirmative and pressed him to explain. Alfonso, who was quite mobile and adept with his wheelchair, gave a quick demonstration by rocking his wheelchair back and forth while he explained: “Look, the front wheels are small, so you need to turn them this way and that when you are going up. You can’t just go straight on [up a ramp]!” She took this impromptu demonstration as an entrée to ask more questions about how to use a wheelchair, which other members who used wheelchairs eagerly began to answer. Alfonso, however, quickly shut the advice session down: “We are here to study the law, not provide therapy!” and brought the group back to Article 9. She sat for the rest of the meeting in silence and stopped attending thereafter. The meeting then moved on to a conversation about the accessibility of taxis. Someone asked if the law applied, to which Alfonso read one of the points (2b) in Article 9, which states that the government must “ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities.” This meant taxis too. A member stated that the taxi drivers were a “social problem” because they almost never stopped to pick up persons with obvious physical disabilities, and that they needed sensibilización (awareness raising). Alfonso also suggested that they needed to start reporting the taxis that do not pick them up, because it is a rights violation. “When they do not pick you up, you need to record their license plate and give the number to the City Hall, because it is the municipality’s responsibility to enforce it.” A member responded: “That works when there is an owner, but not when it is a cooperative,” and a discussion ensued. Many, if not all, of Segovia’s taxis were owned by a cooperative of several families who pooled their money to buy a car that was then shared by several drivers. They then decided that they not only needed the license plate, but a description of the driver and, for good measure, the car’s make, model, and color.

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It was now close to noon and Alfonso began to wrap things up. Before he could adjourn, a man who had been silent throughout and was obviously there for the first time, raised his hand. He explained that he had recently become disabled and needed an orthosis (leg brace). Members began to throw out suggestions, reintroducing the conversation about the difficulties of getting on lists and navigating bureaucratic channels. Apparently, you needed to get a doctor’s note, which then needed to be signed by one office, stamped by another, and so on. But Alfonso interrupted to call the meeting to an end in the midst of the conversation, showing little interest in allowing the discussion to go on. In this way, the meeting throughout never, not for more than a minute, deviated from ADIFIM’s mission to “develop actions geared towards compliance with human rights” and “do advocacy work leading to reforms of laws that affect the rights of persons with a disability.” At the same time, the meeting also did not seem to build or react to its participants – the very people who were the holders of the rights ADIFIM discussed and defended. There was no room within ADIFIM to use their organization as a means of teaching one another to use a wheelchair or to even connect people to local services, which seemed a lost opportunity. But, in ADIFIM’s defense, all of its activities conformed to the letter of the law – Articles 4 and 33 of the UNCRPD – and the international initiatives promoting it.

two persons ADIFIM’s unwillingness to meet the immediate needs of its meetings’ participants and potential members extended to the larger community in Segovia. For example, persons without disabilities often sought ADIFIM’s help by visiting their small office in town. On one occasion, an elderly woman dropped by while I was sitting with Carla and Alfonso chatting about their day. The older woman had come because she was concerned about a neighbor whom she believed had mental-health issues. Her interest in ADIFIM had been spurred by a recent awareness-raising campaign they had run over Segovia’s radio stations. In the announcement regarding the importance of promoting disabilities rights, they described persons with disabilities as anyone with “long-term physical, mental, intellectual or sensory impairments” (my emphasis). This description comes directly from the UNCRPD. The woman was a little out of breath, having just walked a long distance to their office from her home. She said she was desperate to find help for her neighbor, whom she described as “being two persons, sometimes fine and sometimes out of control.” Carla asked what he did when he was “out of control.” The woman then gave a long list of disruptive behaviors that her neighbor engaged in, such as pulling laundry off of neighbors’ lines and then leaving them in the street, grabbing things being carried by a passerby and refusing to give them back, and otherwise running around the neighborhood and frightening people. Alfonso and Carla took it all in, quietly responding to her remarks Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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with “que lastima” (“it’s a shame”). The woman went on to explain that she was invested in the family. They were very poor and she often brought them food in solidaridad. When the neighbor with psychiatric disabilities was acting fine, she would even invite him into her home for meals. But when he had bad days, she could see that the family did not know what to do. They were older, like her, and could not control the young man. They also both needed to work, so if one stayed home it meant they would lose pay. She was afraid that without help, he would have an episode in the street and get hurt or hurt someone, including his parents. The older woman had come to ADIFIM to see if they could help the family get some medicine or otherwise tell her what they needed to do. She had visited the police, but they did not know how to deal with psychiatric disabilities and could not offer help. So now, having heard the radio announcement, she was here. Alfonso reflected for a moment. He then explained that mental-health problems were, indeed, a disability and covered under the Convention and the national disability law. He also told her that she was correct to call the police and perhaps should have also gone to the City Hall because it was the government’s responsibility to provide the man care. He then explained that, unfortunately, there were no public mental-health services in Segovia, so there was probably little that the city could do. Alfonso then looked at Carla, who nodded in agreement with him that this was the case in Segovia. She then proffered the idea that there might be a hospital in Managua that could help. The older woman looked in alarm as she thought about the prospect of having to go to Managua. Even though the capital was only a few hours away by bus, it was rare for the vast majority of Segovia’s poor to visit it more than once or twice in their lifetimes. Alfonso then motioned to Martha, who was sitting at the desk, where they kept a notebook of denuncias. She opened it and added the lack of mental-health services in Segovia to ADIFIM’s list of rights violations. As they did so, the woman stared. Alfonso and Martha then thanked her for bringing their attention to this issue as a means of concluding the meeting. After a minute of silent confusion, the woman turned from where she stood in the entrance and slowly walked away.

building community through the defense committee One afternoon, while walking home from an event in Segovia, someone whistled out to me from an open doorway. While Segovia is considered a large city by Nicaraguan standards, it feels like a small town, in that you often ran into people on the street or were called out to from people who spotted you walking by their homes or storefronts. As one of the few foreigners living there at the time, I was easy to recognize by locals, although I often had trouble placing people if I had only met them once or twice before. As I approached the doorway, which was to a small store distributing household plastics – large tubs, basins, and buckets – I saw a man struggling to stand up from Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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his chair. It turned out to be the older man who had been adamant about everyone in ADIFIM knowing about the free eye exams and glasses being distributed by the Lion’s Club at the meeting a few months before. I had not seen him at a meeting since. With a broad smile, he shook my hand and then, apologizing, sat back down again, explaining that his one leg “carried no weight.” His name was Gustavo. After exchanging some pleasantries, I asked Gustavo why he was no longer coming to the meetings. He waved the question off, explaining that he had been busy and had many meetings to go to. With whom? I asked. And he began listing off a variety of associations that he belonged to, including his Community Defense Council. Community Defense Councils were grassroots neighborhood associations that dated back to before the Revolution. Originally, they were clandestine organizing efforts, but after the Revolution they became service organizations, doing everything from participating in the Literacy Crusade and various vaccination campaigns through to operating community centers, collecting food for families who had none, or supporting the Sandinista troops during the Contra War. At their height, an estimated half-million Nicaraguans participated in CDCs in the 1980s, when the population was barely 3 million (Serra 1991). Following the end of the Revolutionary Period in 1990, the new government officially disbanded CDCs, but they never really went away. Daniel Ortega, who had been the leader of the ruling junta from 1979 to 1990, made the official revival of CDCs a part of the Sandinista platform in 2007, when he was brought back to power promising to move Nicaragua forward by returning to a civic culture of solidaridad and participatory democracy, meaning the people would work with the state rather than wait for the state to do everything for them. Gustavo described his CDC as having numerous activities, including promoting health and economic opportunities. I asked him for details, and he began outlining workshops for the unemployed and a rotating fund for starting businesses. It turned out that he was one of the leaders, proudly explaining that his barrio was really progressing (CDCs covered neighborhoods in the cities and small villages in the rural areas). Pulling himself up from his seat, Gustavo pointed out to the street in front of us. He was very proud of the road, which, because we were close to the city center, was paved. Perhaps just a quarter of the streets in Segovia were paved, with the rest being dirt or gravel. The City Hall, however, had a master infrastructure plan that they had been following for years, which included paving several new blocks a year if their annual municipal budget allowed for it. The paved streets, however, were often worse than the gravel because, rather than asphalt or cement, they were done with paving stones or blocks made of concrete, which looked beautiful when they were freshly laid but after a single rainy season the bricks would sink, space out, flip over, crack, or simply disappear, leaving the road riddled with potholes. The man, however, explained that the CDCs organized volunteer work crews and the city provided new bricks so that they could keep their streets nice and smooth. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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I asked Gustavo about his leg. He pointed to it and said “gota” (gout) and further emphasized that it was a “very serious” form (muy grave). He went on to explain that he had tried many types of medicina, but now relied on a crutch that was leaning on the wall behind him. He enumerated the types of medicines he had taken, none of which I was familiar with, and his desire to find a better one. He seemed to be hoping that I would have a suggestion, but I made it clear that I did not know of one. Despite my inability to help, he remained jovial. As our conversation began to wane, a man, roughly the same age, came by and I learned that he was also part of the CDC and had stopped by to discuss some plans. I excused myself and continued on my way. It struck me that, at least in this case, this now inactive ADIFIM member was doing just fine, despite no longer participating in the meetings. Instead, Gustavo seemed to be active in another grassroots association, albeit one that did not explicitly focus on disability. Instead, his civic participation focused on taking care of his neighborhood. Of course, the problem with his leg remained, but that was a problem that ADIFIM was no more set up to address than his CDC. The difference, however, seemed to be that he saw the CDC as, if at least not directly benefiting him (it was unclear if he had used the rotating fund, especially as his plastics shop looked long-established), was benefiting others and, at least in the case of having a wellmaintained street, benefited him indirectly. More than anything, he seemed happy to be part of something where he and the other neighbors were contributing in concrete ways.

true believers While ADIFIM did not meet many of people’s implicit expectations of associations in Segovia, especially in terms of providing a way of participating in both giving and receiving concrete help, it did provide benefits to the core group of members who remained active. Those benefits, however, seemed more psychological than material. ADIFIM’s focus on the law instilled a new identity and consciousness among its core group. Those “conscious” members argued that just knowing that they had rights empowered them, independent of the rights leading to concrete change. During the spring of 2012, when ADIFIM was struggling with its membership, I interviewed those members who were still active, seeking to understand their continuing commitment. Each of them explained to me that joining ADIFIM in Segovia and learning collectively about the law had led to individual transformation. For example, a young man who had hyperkyphosis (hunchback) gave a passionate explanation of his commitment. He explained that as a child and teenager “I was ashamed to walk in the street, it gave me a lot of grief.” All of that changed: When Carla [ADIFIM’s vice president] asked me to join the organization and I was coming here [to meetings], watching people who were also different. It cleared my Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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mind!. . . Before people would call me a [derogatory] nickname and I would become very ill. I felt scorned and all of that and then later, when I was part of this organization, then it became about me moving forward and knowing the law and all that. So, once I had that, I already felt free.

Another member provided me with a similar explanation, which also linked a feeling of personal transformation to the process of becoming a member of an organization and learning about the law. She was a woman in her late twenties who had had polio as a child and used crutches. She was a member of one of the last cohorts of people who had polio, which had been eliminated in the 1980s through the work of vaccination campaigns. When I asked her what she valued about being a member of ADIFIM, she explained: You know that being organized, one realizes the laws that are being ignored or are not known. But once you are organized, you know and you make demands. Being organized, one learns about things that help you win [overcome] barriers and obstacles one has for being disabled and that clears your mind so that you can succeed. I have a normal life like any ordinary person. I do not feel neither more nor less. I am not inferior or superior to anyone, but equal.

Interestingly, both the first and second interviewee each used the phrase “to clear your mind.” Neither, however, could point to a concrete barrier that they had overcome, but instead emphasized the new consciousness that came to them by becoming part of an organization. I asked if they were members of any other associations in Segovia and they were not. Nor had they belonged to any sort of grassroots organization in the past. For that reason, my understanding is that the importance of ADIFIM was that it provided community and identity, rather than the organization proving itself an effective means of substantive change. The good of studying the law together, for example, seemed to be in the validation it gave to individuals, who came to see themselves as persons of worth and in relationship with others rather than as gaining a tool through the law that they could use to access resources or open up new opportunities. A final interviewee, a young man of twenty who had lost his leg in a bus accident a year-and-a-half before, made this point in his narrative of personal transformation by joining ADIFIM. In our interview, he began by explaining his original lamentations and extreme loneliness following the accident. Beyond his family, he was totally isolated from anyone else at that time, including any civil-society association. “I wasn’t a bad person – there are bad people, but nothing happens to them, only to the good people.” He went on to discuss how he felt “tragic” up until the point one of ADIFIM’s members invited him to join them the year before. “When I started going to ADIFIM and I looked at other people with disabilities and they looked happy and they encouraged me. . . Thank God that He has given me this as I am moving forward in ADIFIM!” I asked him if he encountered any barriers, but he said: “No, I’m normal. But in the beginning, I would say to myself ‘I’m no good’ and Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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I would stay that way. But it was because of my psychosis. It was at the beginning of my new life [as disabled]. However, I have started living again and today I feel normal. I do not feel any less than anyone or more than anyone, but normal.” What is interesting about these testaments is that the rights consciousness was about having rights in the abstract and the identity that changed with that thought. In Human Rights & Gender Violence, Sally E. Merry argues that for someone to develop rights consciousness at the grassroots level, local institutions must be responsive to their rights claims (2009: 215). In short, rights must prove themselves effective means that result in concrete benefits coming from the state, such as getting your day in court and seeing a perpetrator prosecuted. Otherwise, people will continue to view their lives in local terms and meaning systems. Yet none of ADIFIM’s true believers, despite exemplifying rights consciousness, pointed to the government as responding to or fulfilling their rights claims, despite the centrality of studying the law and compiling violation reports to their organizational practice. Instead, they emphasized the importance of being part of an organization and holding a new identity. This, however, could be predicted by new institutionalism. Institutional fields not only disseminate norms of behavior for organizations, but they also construct new identities for their members (March and Olsen 1983, 1995). In this way, ADIFIM had become a community of practice where the practices themselves signified belonging. The study of the law and the use of rights language had become a way of living out a creed in community with others, rather than something useful. The community they belonged to, however, was much larger than the handful of members still active in ADIFIM in Segovia, but presumably included all of the other members of disability organizations modeled on the UNCRPD. It was an international community. But, as such a community, it did not draw more people from Segovia into it. Nor did ADIFIM’s members seem to mind or, at the very least, contemplate doing things differently to make themselves more attractive to other local PWPDs. Rather than alter their practice to entice more to join or remain active, the group remained steadfast to a model that at worst alienated and at best simply failed to interest their local disabled peers. Each interviewee swooned about Alfonso and Carla’s leadership and were strikingly committed to using the meeting time for learning the law and issuing violation reports. In an early article on the disability rights movement in North America and the first sociology article to coin the term “identity politics,” Renee Anspach (1979) argues that the disability movement is as much about altering the self-concept as it is about creating social change. A major part of the movement is rejecting societal values that stigmatize persons with disabilities and to instead assert that being disabled is nothing to be ashamed of, but instead a positive identity that can be embraced. Each interviewee explained that by becoming part of ADIFIM, they had begun to feel “normal” and, therefore, “free.” That freedom was not because the law and their rights claims were working for them, but instead because they embraced Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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their disability identity. In this way, they never evaluated ADIFIM according to concrete outcomes, but instead viewed it through the prism of gaining a positive self-identity through their participation. Of course, as Anspach explains in her original article on identity politics and Alfonso was able to explain to me in Segovia, self-concept and social change are linked within the disability movement. In 2011, for example, Alfonso explained that ADIFIM was “changing people’s attitude towards persons with disabilities. People look at us as having rights, not ‘Poor little renquita [lame person or “gimp”] with her crutches’ or ‘poor Alfonso with his wheelchair.’” The faith in the law was not without reason from this perspective, because by changing the way they viewed the self, ADIFIM’s loyal members believed they were changing the world. For others, however, where either they did not feel the sting of social stigma or simply had other identities and other organizations to frame their experiences, ADIFIM and the study of the law did not offer them sufficient reason to remain active. ADIFIM, of course, made no effort to keep them active, but instead prioritized the integrity of their adopted norms and prescribed activities (institutions) of legal advocacy and newfound identities as rights holders over local expectations of organizational practice.

doubling down on double-discrimination Segovia’s Organization of Women with Disabilities (ODIFOM) was established several years before ADIFIM with the help of Handicap International. It too was an example of a manufactured civil-society association that bore an indelible imprint of the UNCRPD. ODIFOM, however, suffered a different fate from ADIFIM. As an organization, they were never able to develop a core membership of “true believers,” thus they disbanded during my field study after a decline in local interest and the loss of international support. ODIFOM also differed in its relationship to the UNCRPD and the larger institutional field defined by it because it was shaped by more than just the Convention’s civil-society mandate that disabled persons’ associations advise governments on disability law and policy and monitor the implementation of disability rights. ODIFOM was created to specifically advance disabled-women’s rights in Segovia. During the years just preceding the UNCRPD, there was a growing social movement of women with disabilities in North America and Western Europe with a specific focus on reproductive rights and gender-based violence (Mays 2006; Nixon 2009). This movement was spurred on by a growing subfield of feminist Disability Studies within academia (see, for example, Thomson 1994) that identified patriarchy within the disability movement and ableism within the women’s movement, resulting in a double-discrimination of women and girls with disabilities. As this movement grew in the Global North, international disability NGOs such as HI increasingly began to promote women with disabilities’ activism in the Global Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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South, centered around the same issues. This focus was subsequently institutionalized by the UNCRPD, which includes Article 6 on “Women with Disabilities,” which specifically recognizes women with disabilities as subjects of “multiple discrimination” and in need of “full development, advancement and empowerment,” and Article 16 on “Freedom from exploitation, violence and abuse,” which requires States Parties to “take all appropriate measures to protect persons with disabilities from exploitation, violence, and abuse, including their gender-based aspects” (for a discussion of the process by which Articles 6 and 16 were included in the UNCRPD, see Kayess, Sands, and Fisher 2014). The UNCRPD also includes articles on the right to family planning (Article 23 on Respect for the home and family) and sexual and reproductive health and population-based public-health programs (Article 25 on Health), although these articles do not explicitly mention women with disabilities, instead focusing on all persons with disabilities. The UNCRPD’s articles specifically on women with disabilities and reproductive health have formed a template for technical assistance and the funding of grassroots associations of women with disabilities. HI, for example, dedicated a significant wing of their Making It Work project to promoting the UNCRPD throughout the Global South through fostering local advocacy to women with disabilities. Their focus, which HI defines as promoting “good practices on the elimination, prevention of and response to violence, abuse and exploitation of women and girls with disabilities” mirrors the language of the UNCRPD (Handicap International 2015). The Disability Rights Fund, which has maintained a funding stream promoting women with disabilities’ advocacy organizations for years, recently solidified its own gender guidelines for grantmaking, which indicate the UNCRPD’s reflective priorities that guide their local funding to women with disabilities’ initiatives. Those guidelines identify seven areas of focus for the type of advocacy they support women with disabilities’ associations in doing. Those foci include sexual and reproductive health, violence and abuse, access to justice, access to education, humanitarian emergencies, political participation and empowerment, and the right to a family (i.e. right to marry and have or not have children) (Adams and Sera 2018). It is very telling that sexual and reproductive health, violence and abuse, and access to justice (i.e. courts) are the first three on the list. It is also telling, as will be discussed below, that income-generating opportunities or material forms of economic support are not on that list. This international norm regarding the rights of women with disabilities combined with the organizational norm that grassroots civil-society associations representing persons with disabilities should focus on rights advocacy (Articles 4 and 33). As a result, international disability NGOs and global DPO networks developed an Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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organizational script or model for women with disabilities’ DPOs that heavily emphasized gender discrimination, gender-based violence, and, to a lesser extent, reproductive health, which they subsequently disseminated throughout the Global South through technical-assistance projects. ODIFOM was formed under just such an initiative in Segovia. Fatima, ODIFOM’s president, described the association’s birth as the result of an HI training project that helped put together their initial junta. Once the board was formed and ODIFOM’s succinct mission, “To work for women with disabilities so that we can fight [luchar] for our rights and be independent,” was established, HI continued to fund workshops that focused on building up the “self-esteem” of women with disabilities, recognizing that “society discriminates against you for being a woman and disabled,” learning that they should not tolerate “domestic abuse” (abuso domestica), and that the only way to combat that was “having knowledge of our rights.” HI also provided ODIFOM with seed money of a couple of hundred dollars that they were free as an association to decide how to use themselves. As a result, ODIFOM’s board opened that question up to their members, who promptly decided to use the money for job training and a rotating fund that they could each borrow from to support the development of their own small businesses and use their profits to pay back over time. Similar to ADIFIM, ODIFOM’s initial rise was precipitous, quickly garnering close to 100 members in Segovia during its first few years. By 2011, however, there were very few active members left and by 2012, as I have mentioned, ODIFOM had ceased to meet or carry out any organizational activities. This decline correlated with HI’s decision to curtail its program activities in Central America at the end of 2010, which meant they were no longer providing rights-advocacy workshops or seed funding to ODIFOM and its members, which included the curtailment and eventual ending of the job training and microloan initiative. I was, however, fortunate enough to participate in ODIFOM’s last meeting, which took place in November, 2011 and was just the second meeting they had held that year. During the meeting, I observed an organization that had moved far away from its focus on the specific rights of women with disabilities as spelled out by the UNCRPD and the international disability-rights movement.

where, what, when, and how do i get there? ODIFOM met in a neighborhood community center north of Segovia’s Central Plaza. On the morning I attended, there were ten women with disabilities, all of whom were middle aged, four young children, a teenage girl, and one of the members’ husbands. The teenage girl explained that she was from the neighborhood and just liked to help ODIFOM out, which she did by looking after the women’s children during the meeting. The husband explained to me that he was an acompañero (companion or escort) in “solidaridad” with the women with Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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disabilities. He had a car and had driven his wife, who used a wheelchair, and two other members there. When the meeting was finally called to order, Fatima began by announcing a membership drive. She explained that since HI was no longer funding their activities, ODIFOM would need to fund their own operational budget. As a result, the board wanted to begin selling membership cards for a fee of five cordoba per month (roughly $0.25 US) or sixty cordoba ($3.00) for the year. This sum produced a worried look on several of the participants’ faces (60 cordoba was close to what many tobacco workers earned for an entire day). One woman asked what they would get with the card? Fatima explained that it would be a discount card; one of the board member’s sons owned an internet café and had agreed to give 10 percent off the normal usage fee and that another member had arranged with a bakery to give a discount on bread. These incentives, however, did not result in any one signing up. Fatima then suggested that they could use the money to create a microcredit project by putting anything not used for organizational expenses into a rotating fund. This peaked one of the meeting participant’s interest, who wanted to know how large the loans could potentially be. The interest, however, quickly faded when Fatima explained that currently they only had 18 cordoba, or about 75 cents, in their budget and it was already owed to her because she had to use her own money to pay for cell-phone minutes to organize the meeting for today. After no one had signed up for a card, Fatima moved on to the informationsharing portion of the meeting, which seemed to be a well-established activity and turned out to be the main activity of that morning. The husband, who was sitting next to his wife, raised his hand to announce that the Lion’s Club would be offering free eye exams (this meeting took place the same month as the Lion’s Club was brought up in the ADIFIM meeting). A long discussion ensued, with a heavy focus on logistics. He offered to help any of them needing transportation to get to the many different places they would need to go to in order to ensure their name on the list for free glasses and exams. Next, Tomasa, the vice president, informed everyone that the Mayor’s Office had offered ODIFIM’s members free scholarships in municipal courses on computing, baking, and sewing for women. These courses were part of an economic-development initiative to foster new cooperatives. If they participated, they could then benefit from other programs that would help them set up small businesses. This announcement generated even greater interest than the Lion’s Club and resulted in a far more detailed discussion of logistics. All but one woman, the one whose son owned the internet café, wanted to participate. There was a particular interest in sewing, as many of the women suggested that they were skilled tailors, but none had either working sewing machines or sufficient supplies to begin a business. Eventually the meeting came to an end. If we had not chatted for an hour in the beginning while we waited for others to arrive, the meeting would have been over in just 30 minutes. There was no study of law or discussions of rights violations. There Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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was certainly no discussion of gender-based violence, reproductive health, or discrimination against women with disabilities. Instead, almost the entire meeting was devoted to ensuring that all who were interested could participate in the mayor’s economic-development initiative and the Lion’s Club eye program. That turned out to be the last meeting ODIFOM held.

odifom’s loss, women’s cooperatives’ gain Following several months of contacting Fatima and Tomasa on when they were planning the next ODIFOM meeting, they finally informed me that they had decided to discontinue meeting. I then arranged to interview them together to learn more about ODIFOM and what had happened. I decided to begin my interview by asking them general questions regarding the women with disabilities they represented in Segovia. My first question was to ask about the most common barriers ODIFOM’s members face. Tomasa did not hesitate during her interview: Oh! For many, it is for a wheelchair! Really, we need good wheelchairs. It is difficult because we have wheelchairs that are wearing out. If they become damaged, it is so difficult to find a replacement. It is impossible for someone to say ‘I’m going to buy another one,’ because most of us are poor—Where would we get the money?

Using her own wheelchair, which was beginning to fall apart, Tomasa explained that her wheelchair, like many in Segovia, had come from a visiting Cuban medical brigade that had passed through years before on a “solidaridad” mission to support the Nicaraguan Ministry of Health. Fatima, after having listened to Tomasa, issued a quick elaboration to Tomasa’s answer by saying that muletas (crutches) were as important as wheelchairs, before going on in a different direction. She thoughtfully explained: “What the members ask for is a decent house, a permanent job, and auxiliares [aids, i.e. wheelchairs or crutches].” She then paused for a moment, and went on: “What I think too is that one of the most important problems we face as women with disabilities is health. That is the greatest need! First health, and then work and housing. Because, if you have bad health, then you cannot work and if you cannot work, you cannot have a home. They are all linked in a relationship, no?” I asked if she meant reproductive health, to which she replied: “No. . . health in general. Being sick means you cannot do anything – work, anything!” I was interested in both their responses, because both were ultimately about fulfilling material needs, something that the UNCRPD does not define as a “women’s issue,” like gender-based discrimination and violence. So, I asked about whether or not discrimination against women with disabilities in society was a barrier. Tomasa thought about it for a minute and then said: “Well, in the transport sector, there is some discrimination because many of the carriers are not accessible. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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That is the biggest problem for disabled people.” Fatima agreed. We seemed to be talking past one another, so I clarified my question by emphasizing that I meant discrimination against women with disabilities. Was their experience as women different from that of men with disabilities? Tomasa answered: “No, I think it is the same. The discrimination is equal for a woman with disabilities as it is for a man with disabilities. We look the same.” Again, Fatima agreed. I went on to ask about violence and domestic abuse. Was that a problem ODIFOM’s members faced? Tomasa’s brow furrowed as she seemingly searched her memory while Fatima, in diplomatic tones, explained that she knew of some incidents and that, through her training had learned it was a big problem around the world, but that among their members it was not a problem in general. Then, as now, I had no way of verifying this. I am sure, however, that gender-based violence perpetrated against women with disabilities is a problem in Nicaragua just as much as it is in other parts of the world, a subject I have researched (Meyers and McCloskey 2018). But it is important to note that ODIFOM’s two leaders did not reflect it as a priority in the same way as it is prioritized by the international disability-rights movement and the UNCRPD itself.

it’s the economy, stupid! Finally, I ended my interview with Tomasa and Fatima by asking about their declining membership and recent decision to no longer continue meeting as an association. They explained that in the beginning, in addition to organizing their members to receive the rights-advocacy workshops that HI was providing, ODIFOM was also able to offer training for their members in crafts, tortilla-making, and other income-generating activities using some organizational startup money they had received from HI. They also provided members with small grants and organized a loan fund to help them go into business themselves, although this money ran out after some time. These economic activities turned out to be far more popular than any of the self-esteem and human-rights workshops that HI was offering and a major reason for their early success in recruitment. The training also proved to be a success in the lives of many of ODIFOM’s members who were able to “integrate into a good job.” But once that startup capital came to an end and all that remained were the human-rights workshops, the membership began its steady decline. With HI pulling out of Segovia, even those workshops had come to an end. The last meeting, however, may have been the final blow; it connected ODIFOM’s remaining active membership with opportunities that ODIFOM no longer offered – participation in income-generating activities. In fact, it connected those members to other forms of association that they subsequently joined. Now, ODIFOM’s inactive members were active participants in economic cooperatives around the city. The mayor’s training initiative for women not only provided skills, but it reflected long-standing support by the Sandinista government of fostering economic Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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cooperatives specifically for women. At the end of the training, participants were offered the opportunity to form associations, such as sewing or craft cooperatives, and then to come up with a plan and apply for a small grant funding equipment, materials, advertising, and other startup costs. ODIFOM’s members who participated, obviously, wanted to aprovechar (take advantage). Five of them were now part of several newly formed women’s cooperatives in Segovia. That meant that they were now participating in a new form of associational life that explicitly addressed their economic needs, but as a cooperative where everyone was invested in ensuring that all of the members did well, it also represented a solidaridad activity defined by social support and self-help. Women’s economic cooperatives represent a long-established, local organizational model in Nicaragua. That meant they resonated with ODIFOM’s members whose ideas about participation were defined by solidaridad. The Sandinista Revolution redefined the relationship between women and men in Nicaraguan society. First, women themselves were not simply left to take care of the “home front” in the build up to the Revolution and subsequent Contra War, but were fully integrated into the Sandinista Liberation Front as combatants at all levels (Chinchilla 1983; Mason 1992). An iconic representation of Sandinista women found in murals throughout Nicaragua depicts a female soldier with a child being held up to breastfeed in one arm and a Kalashnikov held in the other. More to the case, during the Revolutionary Period, women were seen as vital for rebuilding the economy. The Sandinistas founded the Asociación de Mujeres Nicaragüenes Luisa Amanda Espinoza (AMNLAE), as a mass (or popular) women’s organization to support their cause, aptly named after the first female revolutionary to die at Somoza’s hands. AMNLAE subsequently inspired dozens of women’s organizations, many of which dealt with such issues as housing and economic opportunities (Brentlinger 1995: 316–317). Women did everything from organize in cooperatives as artesanas (artisans) to produce ceramics (Field 1999: 125–168) through to women’s workers unions in the manufacturing sector, which included providing daycare to working mothers. Each of these initiatives was understood as a form of self-help and enactment of solidaridad (Mendez 2005). While significant numbers of grassroots women’s associations in Nicaragua focused on such issues as access to family planning and protection from genderbased violence, economic issues remained dominant. This local focus often led to tensions when members of the international feminist movement sought to partner with Nicaraguan women’s associations, particularly within the context of allowing the local members to independently define their priorities in the face of international-funding and global priorities, such as abortion rights (Weber 2002). The movement of ODIFOM’s remaining members to these new cooperatives is an exemplary representation of what can happen when there is a mismatch between what grassroots members and international movements prioritize. The UNCRPD defined an agenda for grassroots disabled-women’s associations as human-rights Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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advocates focused on discrimination, gender-based violence, and reproductive health. Nicaragua’s field of solidaridad organizations, however, defined women’s organizations as self-help, economic cooperatives. For a while, ODIFOM attempted to do both, but once their international support left, it was only a matter of time until their members did as well, in search of opportunities for civic participation that better fit their needs. In the end, the Mayor’s Office initiative provided those opportunities and ODIFOM met its demise. Even Tomasa, one of ODIFOM’s founding members, reflected local priorities despite having been the recipient of significant hours of human-rights-advocacy training through HI’s workshops and other international NGOs on how best to represent Segovia’s women with disabilities. At the end of our final interview, Tomasa carefully asked me if I knew of an organization that could provide her a loan. She realized that she had missed the boat on the Mayor’s Office initiative. She explained to me that she was a seamstress and had a sewing machine that could offer a start to a new cooperative with some of her family members and other women that she knew. They were trying to raise money for fabric, supplies, and a down payment on the rent for a place where they could work together and sell their produce.

members staying put or moving along Comparing ADIFIM and ODIFOM provides an opportunity for looking at how individuals navigate competing organizational fields to make sense of new organizational models introduced from outside. I believe a major factor determining who joins, stays with, and moves on from these associations depends on how individuals “interpret change in the institutional environment based on how they have defined their prior experience within that environment” (Everitt 2012: 205). This analysis highlights the importance of taking individual actors’ perspectives into account when interpreting broad, field-wide change, something that neo-institutionalists have often neglected in more traditional studies (Hallett and Ventresca 2006). It also highlights the way in which the two fields that intersect to form the Venn diagram of the international disability-rights movement’s rules and norms for DPOs overlapping on the one hand and local beliefs and practices for mass organizations in Nicaragua on the other, leads to different choices for disabled persons in Segovia regarding their pursuit of one model over the other. Understanding that different people have different expectations goes beyond more simplistic explanations for local civil-society organizations, including DPOs, encountering problems when they focus on human rights rather than economic issues. Development studies, critical human rights, and a growing number of Disability Studies scholarships on the Global South, have increasingly pointed out that NGOs are often caught in the middle of a disconnect between international human-rights movements and their members and beneficiaries on the ground. For example, Cheru, an African Studies scholar, provides an argument replicated by Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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many when he writes that when local leaders of grassroots associations in Africa devote their time to international human-rights campaigns rather than “critical local ‘bread-and-butter and rights’ issues, the more they risk losing legitimacy and fostering an ethic of isolationism” from the very people (i.e. their members) that they seek to represent (Cheru 2000: 125). These insights from the critical Development Studies and critical human-rights literature are also beginning to show up within more critical Disability Studies scholarship. Shaun Grech, for example, pulls no punches in the conclusion of his book Disability and Poverty in the Global South: Renegotiating development in Guatemala (2015). In a section titled “Rights, policies, more rights: can we eat rights?” Grech writes: “As more policies and discourses are fabricated and exported, the disability and development boat, it is clear, cannot possibly sail on without some questioning and a shift away from the false comfort created by policies, legislation and rights, including disability rights discourse.” He goes on to question the preoccupation with political representation, empowerment, and advocacy of both Northern disability activists and their “privileged Southern counterparts.” I believe my analysis, however, provides something more nuanced than simply an abstract-rights versus concrete-reality dichotomy. Institutions and the organizational models that they promote are not simply things floating “out there”, but instead they are part of the needs, interests, and identities of the people who populate civil society and give meaning to the mission and practices of their associations. When new models are introduced and old models persist, PWPDs in Segovia showed that they have the power to vote with their wheels and their feet by becoming active members in ADIFIM, ODIFOM, and other disability associations or deciding to move on, including joining different civil-society groups altogether. ADIFIM and ODIFOM represent something new. Dansk Handicap Forbund, HI, and others identified a gap in Segovia and sought to fill it by helping to organize new DPOs. But in doing so, they also sought to form a very specific type of DPO – one that explicitly reflected the UNCRPD and would fulfill its civilsociety mandate. This is a clear demonstration of civil society being “manufactured” from the outside. It is also a demonstration of how organizations come to bear an imprint of the environment in which they were born. Arthur Stinchcombe introduced “organizational imprinting theory” (Stinchcombe 1965) within the sociology of organizations to explain organizational inertia – organizations continuing to do the same thing, even when it no longer reflects its environment or those practices prove ineffective. By looking at the ways in which an organization incorporates specific elements from its environment at the time of its founding, you can explain its practices over decades (Johnson 2007). Perhaps the clearest evidence of an imprint is an organization’s mission statement. ADIFIM’s mission bears the imprint of the UNCRPD, the central norm-setter for the global disability-rights field. The mission explicitly links the organization to the Convention by stating that ADIFIM’s actions are geared toward “compliance Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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with human rights” and “doing advocacy work leading to reforms of laws that affect the rights of persons with a disability.” At a much more micro level, ADIFIM’s founding took place within a series of workshops that Dansk Handicap Forbund delivered for the explicit purpose of strengthening DPOs ability to “work for the rights” of persons with disabilities and then its initial funding came from the Disability Rights Fund for the purposes of “strengthening local stakeholders who can hold governments accountable for fulfilling the rights of persons with disabilities.” As such, the international disability-rights movement controlled the “technological, economic, political, and cultural elements of the founding context” (Johnson 2007: 97) and thus shaped ADIFIM from the ground up. In all of these ways, ADIFIM’s founding environment was pure in the fact that it was able to keep out any elements from the local environment. It also attracted people who had not been involved in other disability, or other local, associations before. Alfonso, Carla, and a handful of others were too young to be part of the Organization of Disabled Revolutionaries or the Nicaraguan Association of the Disabled Resistance. Nor were they persons with visual impairments, hearing impairments, or youth with intellectual disabilities, and thus would have been likely members of the Association of the Blind, Association of the Deaf, or Los Pipitos. Thus, local elements, such as solidaridad, were kept out because the international disability NGOs controlled the environment and they drew members who had no experience in civil society. The “true believers,” or core members, who joined later were also young, previously unaffiliated, and unfamiliar with other associations in Segovia. Finally, Alfonso’s litigiousness in keeping the meetings focused on their mission and his subsequent decision to ask inactive members to renounce their membership guaranteed they would stay pure by ensuring others had no influence on their future activities. ODIFOM, however, tells a different story. While it too was founded by an international organization that largely shaped the environment, it drew in middle-aged women who had lived through the Revolution and were familiar with women’s organizations in Nicaragua. Thus, when they joined and were allowed, by being given the opportunity to make their own decisions about the seed money, they brought in those solidaridad activities by deciding to use it for job training and the funding of individual income-generating activities. This was, perhaps HI’s “mistake” in that they had not demanded that the women use the seed money for a rights-advocacy activity. That experience with an activity that was oriented toward self-help in the beginning formulated expectations among the members that ODIFOM would continue providing that type of support, but it also crept into their self-understanding as women with disabilities. It is hard to imagine Alfonso ever describing ADIFIM’s members greatest needs as being a job or health, as Fatima and Tomasa did, despite the fact that on the whole ADIFIM and ODIFOM’s members did not seem strikingly more or less healthy or wealthy in comparison. Alfonso himself lived in a one room home with his brothers that doubled as a leatherworking workshop with only old fabric sheets hanging down from the ceiling Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:31:52, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.004

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to partition off “rooms” and provide any privacy, yet he scoffed at a focus on beneficios even though he would certainly benefit from them. Fatima and Tomasa, however, understood the importance of these material benefits and never voiced disappointment in ODIFOM’s members pursuing them. ODIFOM was also different in that it competed with a far more established field of women’s organizations that were better able to address the needs and resonate with the identities of ODIFOM’s members by providing a context where women with disabilities could become a part of economic cooperatives in Segovia. Thus, it is easy to see that solidaridad, the values of self-help, social support, and services, was potentially as much a part of the identities of women with disabilities as the fact that they were disabled.

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5 Identity Politics as the Continuation of War by Other Means

in, out, and all around the parade On a summer morning in 2012, the seven local, grassroots members of CDIS gathered for their fourth annual National Disability Day march down the Segovia’s main street. The groups quickly unfurled their banners in front of a little park adorned with a statue of the “unknown soldier,” a ubiquitous image throughout Nicaragua of a Sandinista revolutionary launching a Molotov cocktail into the air. The imagined target of the statue’s makeshift grenade is either Somoza’s National Guard during the 1979 Revolution or a raiding party of Contras during the subsequent, decade-long, civil war. Segovia was one of the first places to rebel against Somoza’s dictatorial regime, resulting in whole barrios being rased by the National Guard, Somoza’s personal army. Later, following the Revolution’s success, former National Guardsmen, including those living in Segovia, and others displaced or disaffected by the new Sandinista government’s policies, regrouped in Honduras and initiated a counter, or Contra, Revolution with US support. Segovia, near the Honduran border, became a major target for Contra raids, which left hundreds dead or permanently disabled. Perhaps in memory of this, the statue’s free hand had broken away, exposing the rough concrete beneath its colorfully painted arm. While many of Segovia’s grassroots disability associations included the usual suspects found throughout the international disability movement – associations of the blind, the deaf, mobility impaired, parents of disabled children, and even women with disabilities, it also contained two groups entirely unique to Nicaragua: the Organization of Disabled Revolutionaries (ORD), ex-Sandinista soldiers with disabilities, and the National Association of the Disabled Resistance (ADRN), exContra soldiers with disabilities. On that morning, these two groups were acting in very different ways. Members of the Contra group, just like the members of the more mainstream disability associations, were putting on T-shirts emblazoned with “We are disabled, we are equals” across the back. The negligible number of Downloaded from https://www.cambridge.org/core. Access paid by114 the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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ex-Sandinistas who had shown up as part of ORD, however, did not bother with the T-shirts. In fact, once the march had begun, ORD’s president, Denis, who was wearing his jungle hat and combat boots, chose to walk along the sidewalk rather than in the street with the other participants. He spent his time passing out water to marchers from a bag he clutched with his left arm, which had been amputated from the wrist down. Other ORD members also engaged in supporting roles, directing traffic or handing out water, rather than marching themselves. The reason ORD members were so reluctant to join the activities could not be chalked up to a dislike of marching; just a week earlier, during Nicaragua’s Revolution Day celebration, they had joined a long parade of other Sandinista veteran groups on the very same street. They simply had little interest in the National Disability Day’s activities. As already mentioned, ADRN showed up in full force. Their president Humberto, dressed in a white polo shirt and crisp jeans, chose to lumber along with leaders from mainstream disability associations, his one leg still filled with shrapnel. These leaders marched behind a banner calling for Nicaragua to fully implement their new disability law, Ley 763 (2011), which was explicitly modeled on the 2006 UN Convention on the Rights of Persons with Disabilities (UNCRPD). Behind them strode the rest of ADRN’s members, mixed in with and indistinguishable from the other disabled marchers. These ex-Contras, unlike the ex-Sandinistas, did not get to march on other Nicaraguan holidays. Two decades earlier, Contra forces had sought to destroy Segovia. Today, some of those very same Contra fighters, who had been wounded during the conflict, were demanding that the city respect their rights as persons with disabilities. The actions of these two similar, but also very different organizations, highlight differences in how local groups of persons with disabilities identify, often in ways Contrary to the identity promoted by the international disability-rights movement. At the core of the global movement sits the social model of disability, as spelled out in the UNCRPD, which guides the practice of both international and grassroots activists. According to the social model, disability does not result from an individual’s physical, cognitive, sensory, or psycho-social difference (or “abnormality”), nor is it best addressed through therapy and rehabilitation. Instead, the social model conceives of disability as the result of societal discrimination (Oliver 1986), best remedied through the promotion and protection of human rights. As such, the logic of the international disability-rights movement portrays persons with disabilities as something of a homogeneous group that shares a singular identity as unjustly discriminated against for their impairment. The social model is also a tool that raises the consciousness of persons with disabilities, teaching them that “they don’t need to change: society need[s] to change” (Shakespeare 2006: 30), which leads to identity politics (Anspach 1979) as a means of addressing disability oppression. By claiming disability (Linton 1998), disabled persons are not only pressing for a more just social order, but demanding recognition (Fraser 2003) as full and equal citizens. Being “disabled” and “proud” is Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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a central form of civic participation within the disability movement. Claiming the identity itself is an important form of rights advocacy, because it is an announcement that you belong to a group that has equal rights.

war hero or traitor? wounded or disabled? Powerful international disability-rights activists argue that bringing people with disabilities around the world together under a singular identity for advocacy is absolutely necessary for their empowerment (see, for example, Flood 2005). Yet, during my time in Segovia, I learned that the effects of this new identity are not universally positive, nor do all persons with disabilities accept the social model as a true representation of their experience. Instead, different disabled persons’ organizations strategically deploy this institutional logic to either gain advantage or to simply avoid being left behind. They may also counter the disability identity with other identities that they, in fact, believe represents a more authentic self (Taylor 1989) or use the disability identity in lieu of a more stigmatized and less protected identity, even if that identity is more salient in everyday life. These identity-management techniques are not simply about gaining access to material resources, but conduits for civic participation in the public sphere (Lichterman 1999). These identity negotiations take place in a local context where the same disability can have very different meanings and ascribe very different statuses for a disabled individual. They also can lead to different forms of civic participation – those guided by rights advocacy and those guided by self-help and social support through solidaridad. By comparing ADRN and ORD, I found that disability can signify having been wounded in combat, a local and inherently political identity that is more complex than the social model can accommodate. Ex-Contra soldiers who were disabled while fighting in the Nicaraguan Civil War are a politically discredited group who are today presenting themselves as persons with disabilities “through no fault of their own,” thus setting aside their stigmatized identity as “traitors.” By adopting the universal disability identity, these ex-Contras are able to participate in CDIS as equals and gain resources and recognition on the basis of being part of a rights protected group. In Contrast, ex-Sandinista soldiers disabled in the war are a historically valorized group who are perceived to have protected the community from outside attack. The universal disability identity threatens their status as “war heroes,” their ability to differentiate themselves from other disabled persons, and traditional ties to local elites. Yet, because of the passage of the UNCRPD and a new Nicaraguan disability law, these war heroes must sometimes, in their own view, “lower themselves”; by this they mean that they must associate with others who have disabilities in order to access benefits that were once theirs by virtue of their extraordinary service rather than being members of a putatively marginalized class. This analysis shows that organizational models spread identities that are assumed to be universal, but cannot be assumed to have the same effect as they diffuse across Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

Barriers to Participation

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different subgroups. Instead, these new identities, or “scripts” (Goffman 1959), interact with deeply rooted identities and local relations, triggering strategic, and often Contradictory, responses by various actors. By using disabled veterans from opposing sides of a civil war as a case study, I am able to highlight the role local political context plays in shaping the identities of different groups of persons with disabilities and their relationship with the larger community. This “politics of the local” (Fine 2010) demonstrates the importance of focusing on the complex role small groups play in their members’ identity formation and preservation (Fine 2012: 162–164). This raises questions regarding the assumption implicit in the social model of disability that persons with disabilities belong to a singular “group” (Brubaker 2002). Rather than being universally empowering for all persons with disabilities, the social model creates winners and losers, benefiting some persons with disabilities and not others.

barriers to participation The social model of disability, which is a macro-structural account of disability (Borsay 1997), is dominant within disability studies and in global disability activism. It is, indeed, the definition used by the Convention on the Rights of Persons with Disabilities. The preamble (e) itself explains that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.” What the authors of this definition may never have considered is whether the definition itself presents barriers to specific groups’ participation in a local context. Or, at the very least, if it limits the identity under which specific groups of persons with disabilities are able to participate, by forcing them to adopt one rather than another. The rise of the Western disability movement was based upon the “conscienticization” of persons with disabilities, who became aware of disabling social forces and the necessity of political reform (Shakespeare and Watson 2001: 562; see also Barnartt 1996 and Groch 2001). In 1975, the Union of the Physically Impaired Against Segregation (UPIAS), a progressive membership group of disabled persons in the United Kingdom, provided the first “social” definition of disability as a socially oppressed group when they argued: “It is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society” (UPIAS 1975: 3–4). A few years later, this conceptualization of disability was dubbed the “social model” (Oliver 1983) to emphasize the point that discriminatory “modes of thought” (Oliver 1990) and inaccessible environments are what disable people, not their impairments. The social model was conceptualized in this way to draw a Contrast with other understandings of disability, such as the medical and charity models, which Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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emphasize the need to care for, pity, or “fix” (i.e. rehabilitate) individuals with impairments. The paradigm shift from disability as the result of an individual difference to disability as the “the failure of a structured social environment” (Hahn 1986: 128) helped politicize persons with disabilities; cross-disability advocacy organizations soon sprang up, demanding reform (Barnartt and Scotch 2001; Fleischer and Zames 2011). Under the social model, distinctions between individuals with physical, sensory, communicative, intellectual and learning, and/or psycho-social impairments collapse, opening the door toward the development of a common, cross-cutting disability political identity (Anspach 1979; Putnam 2005). Zola (1982) spelled this identity-based mobilization process out in his call for collective action: We with handicaps and chronic disabilities must see to our own interests. We must free ourselves from the “physicality” of our conditions and the dominance of our life by the medical world. In particular, I refer to the number of times we think of ourselves and are thought of by others in terms of our specific chronic conditions. We are polios, cancers, paras, deaf, blind, lame, amputees, and strokes. Whatever else this does, it blinds us to our common social disenfranchisement. Our forms of loss may be different, but the resulting invalidity is the same. . . Not only has this led to an overspecialization of services but to an underdevelopment of our consciousness. (243)

According to the social model, persons with disabilities are empowered when they recognize that they are oppressed by an “ableist” social world view (Campbell 2009), a realization that does not promote a feeling of victimization, but instead acts as a “clarion call” for “social change agents” (Charlton 1998: 192). Asserting a positive disability identity is considered central to fighting stigma, addressing discrimination, and effecting change (see Darling 2013: 71–74 for overview and critiques of disability identity politics). Following initial success in North America and Europe, Western activists soon moved toward incorporating all persons with disabilities into a singular, global movement. Few disability studies scholars and activists have questioned the social model’s relevance in non-Western contexts, advocating that it is still the best “explanation of our experience as disabled people whether we live in the developed or majority [developing] world” (Flood 2005: 191) and asserting that all persons with disabilities are “united by their shared oppression within the world system” (Sheldon 2005: 126). This advocacy, spearheaded by disability organizations in the Global North, led to the 2006 passage of the UNCRPD, which is based upon the social model (Sabatello and Schultz 2014: 2). As such, the universal disability identity has been effectively written into international law by categorizing all persons with disabilities as a singular group regardless of local context or disability type. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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Even though the social model is now internationally dominant and often used by disability activists and scholars as an “ideological litmus test” (Shakespeare 2006), its limitations have been recognized. Many activists have argued that attention to specific individual or group histories has no place within the disability movement because “the social model must exclude the consideration of personal experience” (Galvin 2003: 149) in order to highlight the socially imposed nature of disability. This exclusive focus on social structures, however, falsely presents persons with disabilities as a homogeneous group. As such, it is a case-in-point of what Brubaker (2002) calls “groupism,” the assumption that certain identities and categories actually exist as things-in-the-world” and as “internally homogeneous, externally bounded groups” (164). Critiques of the social model contend that disabled persons are diverse and may experience disability very differently in relation to the way their impairment is embodied (Hughes and Paterson 1997; Shakespeare 2006; Thomas 2004), their age or point in their life cycle (Priestley 2003), and the other identities (i.e. race, class, gender, etc.) that persons with disabilities have that may be more important to them individually or within specific contexts (Darling 2013: 44). Putnam (2005), incorporating many of these same critiques, argues that the salience of disability as a political identity may also depend on personal experiences with discrimination and individual involvement in the disability movement (194). From a more global perspective, Meekosha (2011) has argued that the social model is rife with cultural assumptions that ignore local realities in the Global South. In a similar vein, but from the perspective of social psychology, Safilios-Rothschild (1970) suggests that the stigmatization of persons with disabilities is relative to many factors, one of which is the relative importance of activities that carry a high risk of disability, such as war. Building upon Safilios-Rothschild’s point, Darling (2013: 13–14) argues that social conditions affect societal views of disability, including the way disabled veterans are viewed and, in turn, view themselves. Disabled veterans are a particularly interesting subgroup for examining identity. Disabled veterans may, in fact, face less stigma and access more benefits than other persons with disabilities. This may explain why veterans often have an ambiguous relationship with other subgroups of persons with disabilities and the disability-rights movement. In the United States, for instance, disabled veterans organizations have both participated in campaigns led by the larger disability movement, such as advocating for accessible transportation (Fine and Asch 1988: 3) and nondiscrimination legislation (Barnartt and Scotch 2001: 169), and opposed objectives of the larger movement, such as blocking the universalization of disability benefits in order to preserve special privileges and separate treatment (Fleischer and Zames 2011: 171). While these latter activities may seem cynical attempts to corner a larger share of public resources, they also have symbolic value in terms of disabled soldiers preserving validation for their service and maintaining a positive sense of self. Messinger (2011), for example, has shown that the rehabilitation regimes for veterans at Walter Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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Reed Army Medical Center in Washington, DC are as much about soldiers developing socially valued identities as they are about regaining physical functions, an objective further evidenced by official hospital policies that refer to patients as “Wounded Warriors” and “Heroes” (Wool and Messinger 2012). Given the topical specificity of disabled ex-combatants in Nicaragua, literature is limited. There is, however, one extremely helpful prior study. Bruun (1995), who conducted fieldwork in Nicaragua during the 1980s, describes a Sandinista soldier, who had lost both legs in combat, being publicly honored. This treatment led Bruun to conclude that disabled Sandinista fighters in Nicaragua were achieving a new identity as war heroes. Bruun argued: “What really made this change of identity possible was the political context of [the disabled soldier’s] trauma, which made him more special than he would have been if he had been born disabled” (201). Neither Bruun nor studies of disabled veterans in the USA or Nicaragua, however, consider how different groups of veterans react to the social model or utilize the universal disability identity. Nor do they have the advantage of comparing two groups of veterans from opposing sides of a conflict. My analysis focuses on identitymanagement techniques, utilizing Goffman’s classic account (1963) and recent analyses of stigma management that highlight the fact that individuals are members of multiple identity groups (Brewer 2000; Rockquemore and Brunsma 2002) and “proactively” negotiate their identity (Renfrow 2004). I also recognize that not all discredited identities are the same, building upon Falk’s (2000) differentiation of stigma on the basis of “achieved” (based on behavior, such as criminality) and “existential” (through no fault of one’s own, such as ethnicity). In these ways, I am able to show that disabled veterans in Segovia are strategic actors, aware of how they are perceived by others and active in either reshaping or attempting to preserve their place within the social order through their identity work. Persons with disabilities as a “group” (Brubaker 2002) are not a given. Instead, they are a collection of diverse individuals with equally diverse life experience. Their social identities as persons with disabilities, war veterans, and political actors, however, are developed, preserved, or transformed within the specific civil-society associations that they belong to (e.g. ORD or ADRN) (Fine 2012).

scars of war While today Segovia is known more as a transport hub, processing and then moving tons of tobacco and coffee from its factories and warehouses down to ports along the coast, its identity comes more from the past than its present. Many of the buildings still bear the scars from when Somoza ordered the city air bombed in 1978 and 1979 in his attempts to quell the rebellion. Many of the people I had gotten to know while living there regaled me with stories of fleeing into the surrounding forest during those attacks. Others spoke of hiding under beds and, according to one, in a baker’s Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

Red Badge of Courage or Scarlet Letter?

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oven for days on end as the dictatorship’s National Guard conducted door-to-door sweeps. Despite the eventual success of the Revolution with the expulsion of Somoza and the establishment of the Sandinista government, peace in Segovia was shortlived. Within months, Segovia found itself on the frontline of the Contra War, as disaffected National Guardsmen reorganized in CIA-funded camps along the Honduran border and, joined by others disaffected by the Sandinista regime, returned, attacking the new government’s outposts and civilian centers (Kinzer 2007). Finally, in 1989, the Sandinista government, tired of a war that had left 40,000 dead in a country of only 4 million, and the Contras, having gone broke after the Iran-Contra Affair had ended their covert funding once and for all, signed the Peace Accords. As part of the deal, the Sandinista government offered a blanket amnesty to Contra soldiers. Two decades later, the memory of the Revolution and Contra War lives on in Segovia, where every barrio’s entrance is adorned with a concrete memorial listing the names of Sandinista soldiers who fell, and abundant murals that commemorate the bravery of the Sandinista soldiers who defended the city from Contra attack. Equally, the Sandinista legacy lives on in politics: 64 percent of Segovians voted for the Sandinista Front in the 2011 election and nearly every local office is filled by a Sandinista. It is in this local environment that persons with disabilities make sense of their impairments and develop their disability identities. And, as a former battleground populated by the war-wounded, politics and disability are intertwined in Segovia.

red badge of courage or scarlet letter? Disability for the ex-combatant members of ORD and ADRN in Segovia has social meaning rooted in a history of war. The ORD members are Sandinistas who overthrew a deeply unpopular dictator and then defended the nation from outside attack. Their disabilities, acquired in battle, are a symbol of valor – a sort of “red badge of courage.” The ADRN members are Contras, or the “Nicaraguan Resistance,” a diverse group that included National Guardsmen and other Somoza loyalists who were displaced when his regime fell, peasant farmers who opposed Sandinista policies, such as price controls on various agricultural goods and other groups disaffected by the new government. As such, many headed to Honduras, only to return to Nicaragua as guerrilla fighters, attacking the citizenry. For them, their war wounds remind the larger community of their treasonous past, acting as a sort of “scarlet letter.” The universal disability identity has the potential to wipe away both of these local political meanings by presenting disability as a universal and ahistorical identity. Each group engages in identity-management practices. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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contra dictions in the contra claim for rights ADRN is a civil-society organization founded in 1990 to represent the interests of disabled Contra fighters. During the 1980s, the Reagan Administration had provided clandestine support to the Contras, causing many to believe they would either be able to retake Nicaragua or eventually be granted US citizenship. In 1987, however, that support was withdrawn as a result of the Iran-Contra scandal, which revealed that US intelligence services had been secretly supporting the Contras against an explicit prohibition passed by the US Congress. Without outside support and with nowhere else to go, the Contras eventually agreed to lay down their weapons and return home under a general amnesty. With seventy members Segovia’s ADRN chapter is one of Nicaragua’s largest, virtually all of whom are middle-aged men who fought in the 1980s. The vast majority of members have mobility disabilities due to either amputations or loss of function in one or more limbs. A few have other types of combat-related disability, such as visual or hearing impairments. While more than twenty years have elapsed since the end of the Contra War, ADRN members’ political identities are as strong as ever. During the ADRN’s 2011 end-of-the-year celebration, an annual meeting followed by a barbecue, I was schooled on Nicaraguan politics by half a dozen members determined to tell me how terrible the Sandinistas really were. Less than a month before Daniel Ortega had been reelected President of Nicaragua as the Sandinista Front’s candidate. Ortega’s unique history as an early opponent of Somoza in the 1970s, leader of the Sandinista ruling junta, and then president during the 1980s, and political comeback with his return to the presidency in 2007, assured him a landslide win nationally, and almost two-thirds of Segovia’s vote. To the ADRN members that I spoke to that day, however, Ortega was a potent reminder of their failure two decades earlier, when they had sought to topple the Sandinista regime. The end-of-the-year celebration in December was held in the ADRN’s new hall, which was a large, single room with brick walls, a zinc roof, and a dirt floor. I sat down in one of the rows of plastic chairs and struck up a conversation with another member who was waiting for the meeting to begin. Upon learning that I was from the United States, he asked me what I thought of Nicaragua’s presidential elections. Trying to preserve my neutrality, I told him that I did not know anything about Nicaraguan politics. “The only thing you need to know is that Ortega is garbage,” he said with finality. Another member from across the aisle turned around and joined in. The first thing he did was point to the ceiling and say “Techo democracia” (roof democracy). I had heard this term before, but asked him to explain it. To him, it meant that Ortega was buying off the populace by giving them regalos (gifts). As we spoke, more members decided they wanted in on the conversation and moved their seats closer. As a group, they reached a consensus that the main problem in Nicaragua was that the people, especially the poor, were stupid and would always vote Sandinista. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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The conversation we were having was a rare one for me. Since I had lived in Segovia, Ortega and the Sandinista Front were often talked about in balanced, if not glowing, terms. The one exception had been during a disability-advocacy training for all of the members of Segovia’s disability-rights coalition, which was conducted by an NGO from Managua. During a presentation on political advocacy, the trainer tried to make a point by saying that during the Somoza dictatorship civil-society advocacy was impossible, but today advocacy worked because Nicaragua was a democracy. At that point, Humberto, the ADRN’s president, leaned over to another ADRN leader sitting with him in the back and quipped “Democracia? Techo democracia!” under his breath. It was then that I learned that techo democracia was a criticism of the Ortega’s “Plan Techo,” a set of social programs distributing assistance to vulnerable populations and civil-society organizations, including persons with disabilities, who were a priority group. Roofing materials were one of the benefits. There was no question that members of the ADRN maintained their political identities as being in strict opposition to the Sandinista government. But, they were also doing so with discretion, a basic identity-management tactic (Clair, Beatty, and MacLean 2005; Herek 1996). The ADRN were keeping their vocal opposition to the Sandinistas within a “backstage” environment (Goffman 1959), whether by keeping their quips down to a whisper in public (the advocacy training) or reserving their most vociferous attacks for private places (the ADRN hall). ADRN opposition to the Sandinista Party, however, was not only political, but also personal. Throughout my field work in Segovia, ADRN members would tell me about the difficulties they had finding work, alluding to discrimination. In an interview with Humberto, the ADRN’s president, I asked about how ADRN members encountered discrimination in everyday life. Humberto presented a novel view that brought together both sides of the ADRN members’ identities and indicated that he was aware of his members’ membership with multiple identity groups (Brewer 2000; Rockquemore and Brunsma 2002): “We have here double discrimination, for being disabled and the other for not agreeing or matching with the politics of the current government.” In the disability-rights world, “double discrimination” is normally reserved for discussing intersectionalities between gender and disability that make women with disabilities particularly vulnerable (for example, see UN-ENABLE 2013). Humberto, however, was highlighting the fact that his members were a political minority and disabled. As I pressed for more information, however, I learned that not all forms of discrimination are equal. When your members encounter discrimination, is it mostly for their participation in the war? Or because they are disabled? Humberto: Well, with this organization [ADRN], if there is discrimination, it is discrimination because of political creed. Because, for example, SM:

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right now, with the current government, it is not so much because of disability. For example, Segovia is quite aware [sensitized] and has been regarding disabilities. We talked to the Ministry of Labor and they have already included forty people with visual disabilities. Humberto was referring to a meeting earlier that week that I had observed between CDIS, Segovia’s disability-rights coalition, and the Ministry of Labor’s local office. During the meeting, the Ministry and CDIS discussed ways to enforce the new National Disability Law (Law 763), which imposed a hiring quota requiring that persons with disabilities make up at least 2 percent of the workforce of companies over a certain size. One of the strategies they discussed was to continue a partnership between the Ministry of Labor and the Association of the Blind to place and train persons with disabilities as cigar rollers. SM:

Humberto:

I know about that – hiring people with visual disabilities. Do you know Julia, from the Association of the Blind? We visited some of those factories together. Yes, however, there are a lot of employers with a political character and there has been a big impact made by the current [Sandinista] government, which has created a problem with the institutions [government offices]. We have some members of the association in various State institutions, but sometimes you have to hide your political beliefs. . . I was working at the INSS [National Institute for Social Security], and Pablo [another ADRN member] too. We worked as security guards and one time we arrived and an official told us that we could no longer work there. . .We had been given the assignment and objectives – we were fulfilling them – but this government lady told us “No, I’m sorry, you can’t be here.” We had knowledge of the entire internal process of the institution. But, when we left, it was because of discrimination at the political level. The association [ADRN] has this friction with the current government that is not so much about your disability, but is a political friction. Yes, there is discrimination, I’m telling you that there are some in the association who have to deny that they were part of the Resistance. In that case, they [the institutions] were violating my rights according to the Constitution, which says I have the right to participate politically. But when they say you have to be affiliated with the [Sandinista] Front to work, then they are discriminating against you and you have a violation of a person’s rights.

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We Are All Disabled Now

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Despite Constitutional protections, ADRN members knew that they were at a disadvantage in a patronage system that reserved government jobs for Sandinista Party members. Having to “deny that they were part of the Resistance” was an allusion to concealing discrediting information (Clair et al. 2005; Woods 1994) and the fact that it had to be done in government offices, indicative of exercising discretion in particular settings (DeJordy 2008). ADRN members, however, were learning much more subtle techniques. As both Contra and disabled, they were learning that they could pick and choose among multiple identities (Brewer 2000; Rockquemore and Brunsma 2002) according to the situation at hand. While the Contra identity, especially after the reemergence of the Sandinista Party, carried risks, the disability identity could lead to new rights and resources.

we are all disabled now During the ADRN’s 2011 end-of-the-year celebration, using disability as a primary identity was openly discussed. The main meeting that afternoon was eventually called to order, bringing an end to my techo democracia discussion. The board began by presenting their annual report to the sixty members in the hall. That year’s accomplishments were listed out: seven sets of crutches had been given to members, the rotating loan fund had provided credit to a dozen others, and so on. The most important accomplishment of the year was the building of the new hall in which we were presently sitting. Without irony, given the members’ feelings about Ortega’s social programs, the board acknowledged that the land, which had been a vacant lot owned by the city, and the roofing materials, were donated to the ADRN by the local Sandinista government as part of their “Plan Techo” to assist civil-society associations representing marginalized groups. The board also highlighted ADRN’s work regarding the passage of Law 763, Nicaragua’s new National Disability Law. One member asked a question regarding disability pensions for ex-combatants. The question was in reference to the 1989 peace negotiations, when Contra leaders held out for both a blanket amnesty and reinsertion benefits for their troops before agreeing to demobilize. The rehabilitation benefits for returning Contras never came to fruition. For years, the ADRN had advocated for their reinstatement. As of December 2011, however, Segovia’s members were informed that the ADRN was only interested in advocating for the implementation of Law 763, “The Rights of Persons with Disabilities.” The board Vice President, who was speaking, emphasized the point that their advocacy would not be for “combatants,” but “universal” – for all persons with disabilities. This message of advocacy on the basis of disability, rather than combatant status, had already sunken in when I interviewed ADRN members a few months later. Longtime member Francisco Javier was confident in the anti-discrimination protections offered by Law 763. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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SM: Francisco:

SM:

Francisco:

Do you encounter any barriers in your normal life? For example, discrimination? Currently, I no longer do because I am really defending my rights – which say that I should not be discriminated against for having a disability. It’s better now because I am defending my rights like any other, I cannot be discriminated against because a person with a disability and a normal person, who does not have anything [any disability], is under the same law. The law is not lost. Okay. Well, this association has two sides to its identity: persons from the war and persons with disabilities. Is that right, you have those both? Do you experience discrimination for your participation in the war? Before, you could be discriminated against for that reason. There was some [discrimination], but now, at this stage, it is better primarily because the statutes of the association are open and anyone can participate – people with disabilities that were caused by the war as well as disabilities caused by accidents in the street, disease, in general. . .

Francisco’s second answer refers to recent changes in the ADRN’s membership policy. In 2011, ADRN officially opened membership up to all persons with disabilities. It was seemingly a way for members to take advantage of the lessening of (or protections from) disability discrimination, while putting aside persistent discrimination toward ex-Contra. While this did not result in an increase in members (they remained an organization made up almost solely of ex-Contra soldiers), it allowed ADRN to distance themselves from their Contra past and present themselves as nonpolitical. A 2012 recruitment pamphlet echoed language from the UNCRPD by stating the association’s general objective as: “Contributing to the process for the integration of persons with disabilities in social life and the nation’s productivity, in a framework of respect for their human dignity.” Under the question: “Who can be a member of the ADRN?” the pamphlet stated: “All persons with disabilities can be members of the ADRN. . .,” going on to specify that a member can “be a person possessing a disability, the cause of [which] is not important” [my emphasis]. Any indication that ADRN had been and continued to be an organization made up of ex-Contras had been wiped away. These policy changes, along with the discussions that took place at the annual meeting, exemplify the importance of small, face-toface groups in formulating and disseminating social identities that members can then take out and use in public (Fine 2012). By presenting themselves as persons with disabilities in general, ADRN is prioritizing a protected identity over a discredited one. In critiques of the social model, Darling, for instance, suggests that other potentially primary identities, such as race Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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or gender, may be more salient to a disabled individual than their disability identity (2013: 44). In this case, however, the political identity as Contra is the most salient, as well as the most problematic. By strategically choosing to present themselves as “disabled first,” however, ADRN members had learned that they could advocate more effectively than their Contra identity allowed. Furthermore, they were utilizing the social model of disability in claiming that individual experience and the specific cause of the disability should play no role in disability advocacy (Galvin 2003). What is so interesting about this dynamic is that many members of ADRN did not believe that disability discrimination was a major problem, yet were embracing a movement, law, and identity premised on the idea that persons with disabilities are a socially oppressed group (Oliver 1983; UPIAS 1975). In short, their shift to disability as a primary identity in their public advocacy does not seem to have come from being “conscientized” (Shakespeare 2006), but instead in recognition of the disability movement’s presence (Putnam 2005: 194) and the opportunities it had wrought. In this way, claiming disability (Linton 1998) was not a claim for recognition (Fraser 2003) as an authentic self (Taylor 1989). In an interview in 2012, Jose Santos, another longtime ADRN member, explained the lessening of disability discrimination over the years. In the year 1990 or 92 until about 94/95 there was a lot of discrimination from disability because it was strange for everyone to see a person using a wheelchair or perhaps really limping – back then there was discrimination. But now, we have sensitized the people and, at least here in Segovia, they are a little more aware and don’t scoff at persons with disabilities.

The importation of the social model of disability and creation of CDIS, Segovia’s disability-rights coalition, also provided ADRN with the language and the opportunity to publicly present themselves through the universal disability identity. These two factors often came together. The National Disability Day march described in the introduction was only one of many opportunities. Through the coalition, ADRN was able to participate in a series of events and projects sponsored by the Agency for the Promotion of Local Economic Development (APROE), a local-government office commissioned to improve Segovia’s economy. CDIS, as one of APROE’s first partners, played a major role in the development of the initiative’s mission and values statement, including the specification that APROE would utilize an “inclusive development approach.” The phrase “inclusive development” is a reference to Article 32 of the UNCRPD. One of APROE’s kick-off events was a meeting, cohosted with CDIS, for business leaders. Humberto joined the president of the Association of the Physically and Motor Disabled and a representative from HI, to present the social model of disability and the UNCRPD to attendees in the City Hall. During the presentation, Humberto described the high unemployment among his members as the result of Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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discriminatory social attitudes toward persons with disabilities – a problem he explained was best remedied through increased awareness and respect for human rights. As Humberto spoke, he was in a sense imputing disability prejudice upon employers who did not hire ADRN members, even though he knew it was their political identities that were the problem. He could do this because the PowerPoint behind him, which was provided by HI and had just been translated into Spanish from its original French, presented disability as a universal identity. The photos included in the presentation were drawn from Asia, Africa, and Europe. Yet, on the other side of the screen stood a ten-foot-high mural on the auditorium’s wall commemorating the Sandinista Revolution, displaying Segovian citizens dead in the street and Sandinista soldiers fending off a Contra attack. By putting the disability identity first, ADRN members were able to proactively present themselves with an identity that made them acceptable claimants for local benefits (Renfrow 2004) as well as legitimate voices in the public sphere (Lichterman 1999). The greater acceptability of the disability identity is that it presents the stigmatization of persons with disabilities as “existential” – based upon a prejudice that has nothing to do with the actual, individual person (Falk 2000). Discriminating against someone who has done nothing wrong is socially unacceptable. By framing job discrimination in those terms, Humberto had sidestepped the issue that the far more powerful form of discrimination that he and his members had encountered was based upon an “achieved” stigma (2000) related to their political identities as Contra.

war heroes or the disabled? While the rise of the universal disability identity was embraced by members of ADRN, ORD greeted it with suspicion. Instead, members of ORD – disabled veterans who fought for the Sandinista People’s Army in the 1970s and 1980s – preferred to publicly act through their identity as “war heroes,” an identity they had been promoting since their founding in 1982 (Bruun 1995). This identity allowed them to take advantage of the local political context when making claims on the basis of individual merit (military service and sacrifice) rather than universal marginalization (i.e. the social model of disability). It also allowed them to act through an identity as war veterans, which continued to be more important to their sense of self than was their disability. In this sense, ORD members, who in many ways resembled their ADRN counterparts in terms of being middle-aged men who had been disabled in combat, were acting in a very different way. Rather than embracing the disability identity, ORD members were promoting the socially valorized identity of war hero over and above their disability, akin to commonly cited instances of Paralympians (Rembis 2013) or prominent elected officials (Wilson 2013) wanting to be seen as athletes or politicians “first.” Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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ORD members, who had long experienced a place of social prominence in Segovia, perceived the rise of a disability-rights movement as a threat precisely because it collapsed distinctions among persons with disabilities. The universalization of benefits through new laws and outreach to disability associations by international organizations, however, often forced ex-Sandinista soldiers to utilize the universal disability identity. In such cases, ORD members were reluctantly claiming their disability identity, despite the fact that it entitled them to certain rights. One thing ORD and ADRN members seemingly agreed on was that discrimination on the basis of disability was not a major problem. For ADRN members, however, the lack of concern regarding disability discrimination was due to a greater concern with political discrimination and a belief disability “awareness” was on the rise among Segovians. For ORD members, however, their lack of concern regarding disability discrimination was based on a belief that if there were disability discrimination, it was less so for those wounded in war, a phenomenon discussed by Darling (2013: 13–14) and Bruun (1995). For some, their status as disabled veterans had even led to benefits, such as government employment. Several members worked as night watchmen and security guards for local-government institutions, the very job from which Humberto of the ADRN had been fired. Fernando, a member of ORD since 1987, demonstrated his belief that disability discrimination was low, especially for ex-combatants, during an interview with me: SM: How has your disability affected your life? Your work? Fernando: This? [pointing to his upper arm] Well, I’ve never had work other than for the State. So, whatever work I have had has been on their account – they’ve given me a life. SM: Did you acquire your disability in the War, in the 80s? Fernando: Yes, in the War. SM: Okay. . . Do you encounter other barriers in your life? Obstacles? Discrimination? Fernando: No, I do not think so, especially because I feel that it [his disability] is not visible. [Showing his forearm, which was out of the sleeve] this doesn’t look like my arm above because the fracture was up here, although the arm is useless from here down [demonstrating that it is paralyzed]. SM: I understand, but what about for others, where the disability is more noticeable? Fernando: If there is [discrimination], it is very mild. And for a war wound, it is much less. From one perspective, Fernando could be seen as successful at passing. He is able to pass because his disfigurement is easily concealed (Clair et al. 2005; Herek 1996) as a result of its location on his upper arm. But when asked about disability discrimination in general he does not seem worried, especially because he is warDownloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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wounded and has a government job. In short, Fernando does not seem to be motivated to pass out of a strong desire to avoid disability discrimination. To Denis, the president of ORD, the idea of disability discrimination was literally a laughing matter. One afternoon, getting some air from a long city council meeting, I ran into Denis on the steps of the City Hall where he was trying to bum a cigarette off of a local TV journalist who was setting up. Once a smoke had been secured, Denis started pointing to the camera and asking: “Why don’t you interview me?” The journalist, who was clearly a friend, answered: “Because you are too ugly.” Laughing, Denis turned to me and said: “He doesn’t respect my rights. This is discrimination because I only have one arm!” I agreed, to which the two of them, giggling, waved off my pretend seriousness, repeating “broma, broma, broma” (joke, joke, joke). Despite the fact that being discriminated against for being disabled was an idea that ORD members were comfortable playing down or even lampooning, they still did not want to be identified as “persons with disabilities.” During monthly ORD meetings, I would keep a running tally of the usage of the term lisiados de la guerra (war-wounded) in comparison with the term personas con discapacidades (persons with disabilities). The ratio in one meeting was ten to one. When “persons with disabilities” was used, it was often qualified as “in general” (as opposed to warwounded) and almost always as a point of Contrast with the members of the group. Their distancing from the identity, however, was not based upon a fear of stigma, but instead a desire to maintain their political identities as ex-combatants. In this sense, they were not passing in order to escape a discredited identity and a desire to be seen as “normal” (Goffman 1963; Leary 1999). Instead, ORD members were trying to stand out and maintain their valorized status. Denis, for example, was confident that the community recognized ORD’s service: You think about it, we only believed in defending the Revolution so that today we [Nicaraguans] would be better off. . . If you go by us in the organization [ORD], we are seen here [in Segovia] as having been born of the Revolution. . . We are the dead, the wounded, and the wounded ex-soldiers who participated in the war – that is the Revolution. Those of us who are the Revolution: the mothers of heroes and martyrs that, thanks to this [Sandinista] government today, are eating a little better. I am glad that I gave.

Denis’ passion spoke to how strongly he, like many of ORD’s members, truly identified as veterans who had been engaged in a cause larger than their own. The memory of their service and its concomitant identity was most assuredly preserved by their membership in a small group (Fine 2012). The strength of the political identity as Revolutionaries for ORD members, however, was tied to the political fortunes of the Sandinista Front. It was no surprise, then, that ORD’s main project for 2011 was inherently political. Without the help or participation of any other members of CDIS, the disability-rights coalition in Segovia, ORD implemented the “electoral Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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accessibility project” on November 7, 2011 for Nicaragua’s presidential elections. The project, which was funded by the European Union and implemented by ORD chapters throughout the country, consisted of placing “guides” at each polling station to assist wheelchair-users through entrance ways or help people with visual impairments fill out ballots. The local ORD chapter was able to gather twenty volunteers to post at Segovia’s voting stations. While ORD, in order to receive funding from donors such as the EU, declared themselves nonpartisan, Denis admitted with a wink and a laugh that “we are all Sandinista.” While Denis displayed no intentions of voter fraud or stuffing ballots, he clearly saw increasing access for disabled voters as a boon for the Sandinista Party, whom he characterized as having “always spoken for the poor in its campaigns, and for the vulnerable populations, which we [ORD members] are ourselves, because we were injured in the Revolution.” As if to confirm Denis’s belief that disability access would increase the Sandinista vote, the still-folded blue vests emblazoned with “Guide” and the EU logo to be worn by volunteers at the polling stations were sitting in a corner of the office, heaped on top of a pile of Sandinista flags. Whereas ORD members did not show up in significant numbers for the National Disability Day march on July 25th, they were on full parade the day following Ortega’s landslide victory that November, as well as one of many groups to march on Liberation Day (July 19, i.e. Anniversary of the Sandinista Revolution), Central American Independence Day (September 15), and Segovia’s fiesta days. During these events, they were the only association of disabled persons as they marched alongside other Sandinista veterans, secondary-school drum corps, and the local Catholic Bishop. The purpose of the march was also different. While the Disability Day march was an advocacy event, these other public events were celebrations of Nicaragua’s accomplishments and valorizations of soldiers, students, and the clergy.

remembrance of things past When ORD members did need something, their preference was to ask for help through personal contacts with local politicians. In the course of the year, I ran into Denis or the ORD Vice President, Juan, at least a dozen times on their way to, or returning from, the Mayor’s Office, where they asked officials, almost all of whom had served in the Sandinista People’s Army during the Revolutionary period, for various forms of assistance, ranging from burial expenses for an ORD member to a bus ticket for a member working in Costa Rica. Some ORD members, however, felt that these relationships of reciprocity should be formalized through specific benefits for ex-combatants like themselves. One interviewee, Javier, spoke of the government building “special clinics for those persons that were in the [Sandinista] Front during the war.” The desire to see special benefits institutionalized for disabled ex-Sandinista soldiers was linked to a concern that their valorized status was under threat, a concern also observed in the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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advocacy of disabled veterans in the USA (Fleischer and Zames 2011: 171). Javier went on to explain: “It is clear that we need [more] support, especially because a lot of times, we [ORD members] are forgotten, or not remembered – the sacrifice that a person who fought in the war has made.” Fernando, despite having received a job from the government, echoed Javier’s concerns, linking them to a failure of government institutions to distinguish between wounded soldiers and persons with disabilities in general: I do not think that we [ORD members] are truly being aided by the government. They give us very little. . . In the hospitals we are already not being treated as people with disabilities from the war, but instead we are treated like any other. There is no longer that merit of before, during war, when everything was for combatants. Already the combatants are no longer treated as combatants in the hospital. There is no longer the priority for the person who went to war. . . The government no longer has a direct line to people wounded in the war.

Fernando and Javier were clearly aware that their privileged identity as ex-combatants was under threat. Similar to recent accounts of wounded US veterans (Messinger 2011; Wool and Messinger 2012), ORD members had acquired their disability identity under a separate rehabilitation regime that characterized them as “war heroes.” During the Contra War in the 1980s, whatever rehabilitation resources the Sandinista government had were prioritized first and foremost for Sandinista soldiers (Bruun 1995). But the concerns with being “forgotten” or losing “merit” seem to go deeper than the loss of material benefits; they are concerns about the loss of recognition (Fraser 2003). Part of ORD’s fears today have to do with legal reforms that took place in 2011. That year, Nicaragua passed a new disability law (Ley 763) as part of their responsibility to norm national legislation with the UNCRPD. As such, the law did not make any distinctions between persons with disabilities. This caused a great deal of concern among both local ORD members in Segovia and their national office in Managua. In the spring of 2012, Denis gave me a copy of a proposal that the ORD national office had sent to the national government. The proposed “Petitioned Agreement with the Government of Nicaragua and Institutions of the State” outlined ORD’s concerns regarding Law 763. The ORD was lobbying for a special seat on a newly created National Council for Disability, justifying their claim on the basis that they had a special duty to make sure that there is “the attention and respect that is deserved by persons with disability resulting from the war.” As the law stood, civilsociety representation was limited to a national disability federation called FECONORI, of which CDIS was a member. The petition also called for the reinstatement of Law 119, which granted pensions to disabled combatants. When discussing the petition with local ORD members in Segovia, they called it a “moral obligation” of the society to care for them. In order to further understand the context and intention behind the petition, I arranged a meeting with a member of the national board of ORD in Managua. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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The board member portrayed the rise of the national disability-rights federation, which had advocated for the new law, and the decline of ORD’s influence as a zerosum game: In the last two years, the [national, cross-disability] movement of persons with disabilities has grown. They have strengthened a lot, they are organizing – fighting and defending their rights. . . The Federation is working, planning, and anticipating the [new] laws that are coming out. . . In the last few years, they have grown into a strong organization. . . For the ORD, however, the problem is ugly. It is a horrible future for us.

ORD’s attempts to stand out as special among groups of persons with disabilities did not go unnoticed by the larger disability movement. A representative from the national disability network told me at a meeting he had organized in Segovia that he was disappointed with ORD, shaking his head and dismissing them as a group of “showmen.” ORD’s refusal to identify according to the universal disability identity put them at risk of sanction, something common within disability-pride movements (Casey 2013). In all of these different ways – preferring to be referred to as “war-wounded” rather than “persons with disabilities,” publicly tying themselves to the Sandinista Party, or lobbying for special status within the National Disability Council – ORD members were utilizing their political identities as war heroes and distancing themselves from their identity as disabled persons. The rise of the disability-rights movement and its promotion of a universal disability identity, however, occasionally incentivized or forced ORD members to adopt the disability identity in order to access certain rights and benefits. In many ways, though, these compromises seemed to confront, if not weaken, their collective sense of self as war heroes. ORD members were reluctant to associate with or participate in any event focused on persons with disabilities in general. Denis, however, felt that it was important that ORD be represented locally, often with the hope of gaining resources from outside funders or ensuring ORD receive their fair share of resources distributed through Segovia’s disability-rights coalition. He was already concerned about not having received funds for a new office through Segovia’s Plan Techo. The ORD office, which had been given to them back in the 1980s, was a single room in a dilapidated brick building that had been repossessed from a Somoza supporter following the Sandinista Revolution. In addition to the metal desk and plastic chairs, the office was filled with donations from various organizations. In one corner was a pile of old computer monitors and keyboards in black garbage bags that ORD had received from HI. During one Sunday meeting, Denis read aloud an invitation for an upcoming conference on disability sponsored by a Managua group, to be held in Segovia’s Recreation Center. Each organization was allowed to invite five members, but ORD had difficulty identifying a single one after it was established that the event was not Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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for war victims, but for persons with disabilities in general. After much goading, one of the regular members volunteered. His immediate rewards for agreeing to go were laughs and shoulder slaps from the other ORD members – he was clearly taking one for the team. It was also clear that associating with persons with disabilities in general was a step down for ORD, but something members occasionally felt they had to do.

the poison letter of the law The most painful instance of ORD members having to associate themselves as persons with disabilities in general, however, came as a result of changes in the law. After the National Assembly passed Law 763 in July, 2011, the national government began a disability-certification campaign. The campaign was in accordance with Articles 64 through 67 of the law, which focused on obtaining a carnet de discapacidad (disability card). Among other things, the card granted discounts on public transportation and access to medios auxiliaries (literally “auxiliary means”) such as crutches and wheelchairs. In order to obtain a card, an individual had to be declared disabled by the Ministry of Health. Although this was a relatively small part of a broad law that outlined protections from discrimination and equal access to education and employment, the disability card was a fixation among ORD members. It was also a bone of contention. The monthly meeting in October 2011 was dedicated to a discussion regarding registration. A few weeks later, in November, representatives from the Ministry of Health and a Cuban Medical Brigade were scheduled to visit Segovia in order to do evaluations and certifications. The central point of discussion was why they (members of ORD) had to get national disability cards when they already had ORD membership cards. One member held up his ORD card, which was in tatters, to explain: “I have had this since 1988/89. I used it then to get anything I need.” Denis was at pains to explain that all members of disability associations were having to do the same. A booklet containing Law 763, published by FECONORI (and paid for by the Danish Association of the Disabled), was passed around, open at Article 65, which outlined the certification process. In early November, the same ORD members who had been incensed over the disability card a month earlier were in line in Segovia’s Recreation Center. They were mixed in with members of ADRN, the Association of the Blind, the Association of the Physically and Motor Disabled, and all other persons with disabilities in Segovia. This act, of joining other persons with disabilities in order to access benefits on the basis of the universal disability identity, was not a liberating act for members of ORD. They were not answering a “clarion call” to become “social change agents” (Charlton 1998: 192) because they now recognized themselves as oppressed. Instead, it was in recognition of the fact that they were losing their privileged status and, as a result of the social model, now part of the same identity category as everyone else. In Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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a reversal of Shakespeare’s formulation that the social model taught persons with disabilities that “they don’t need to change: society need[s] to change” (2006: 30), members of ORD were slowly recognizing that society had changed and now they had to. Their war wounds were no longer perceived as symbols of service and sacrifice, but instead as objects of a shared societal oppression that must be addressed.

oppressed or suppressed identities? At this point in time, the lives of persons with disabilities in Segovia are being reordered. The UNCRPD is attempting to globalize the social model of disability, which presents disabled persons as a universally oppressed group (Oliver 1986), who must be protected through the creation of new rights and benefits. While the international and local activism for persons with disabilities is focused on equality, the outcomes of the propagation of the universal disability identity are anything but equal. It has afforded ex-Contra soldiers with disabilities new opportunities to integrate into the community and claim resources. For ex-Sandinista soldiers with disabilities, however, the universal disability identity diminishes their ability to stand out and be recognized as extraordinary local citizens deserving special privileges. In short, rather than raise the status of all persons with disabilities, the social model has a leveling effect: raising some while pulling others down. What is happening in Segovia is just one example of a larger phenomenon. Transnational social movements that promote specific paradigms for understanding social marginalization and concomitant identities for making rights claims are spreading throughout the world. The UNCRPD is only the latest in a lengthening line of human-rights instruments protecting particular groups. The United Nations’ General Assembly has been adopting such instruments since 1965, when it passed the UN Convention on the Elimination of All Forms of Racial Discrimination. Since then, the UN has passed international instruments protecting women (1979), children (1989), and now persons with disabilities (2006) and other international organizations, such as the International Labour Organization, have passed international protections for the indigenous domestic workers and other vulnerable populations. Recently, the UN established a Working Group to look into the possibility of creating a human-rights convention protecting the rights of older persons (or the “aged”). In each instance, the members of these identity categories are imagined to be to some extent a homogeneous group (Brubaker 2002) in need of protection. While the social model of disability has its own, unique history, there are certainly similar logics being applied to other groups. Many of these models, like the social model of disability, are assumed to be global “goods” that empower the marginalized. The lesson to be drawn from the social model is not that it should be abandoned, but that it should be critiqued. Early disability studies scholars and activists, such as Zola (1982: 243), were primarily Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:30:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.005

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concerned with unifying diverse subgroups of persons with disabilities for the purposes of political advocacy. The identity politics pioneered by the Western disability movement in the 1970s (Anspach 1979) was powerful indeed and did bring about important changes. But it also meant that the diverse experiences and identities of persons with disabilities were denied (Darling 2013; Hughes and Paterson 1997 ; Priestley 2003; Shakespeare 2006; Thomas 2004). Today, the international disability movement is having a similar effect upon diverse groups of persons with disabilities in the Global South by imposing (or imputing) a singular identity upon them (Grech 2011; Meekosha 2011; Meekosha and Soldatic 2011). The full effect of these global models on particular groups and the way in which they are worked out face-to-face in small group settings (Fine 2012), however, can only be observed through deep ethnographic analysis. Fortunately, a rich tradition of social-psychological analysis has provided conceptual tools, such as identity management (Goffman 1963), for doing so. But, old assumptions about stigma must be challenged by the possibility that awareness campaigns do work (Putnam 2005) and can, in fact, “flip” a traditionally discredited identity, such as disability, into a protected identity that provides some advantages. Furthermore, the holders of these identities, such as the members of ADRN and ORD, must be recognized as strategic actors who are aware of the context they live in, the multiple identities that they hold (Brewer 2000; Rockquemore and Brunsma 2002), and proactive (Renfrow 2004) in their appropriation or resistance to various global and local identities available within their environment. At this stage, it is hard to predict whether or not ADRN will be able to fully shed off their discredited identities as Contra or if ORD will permanently lose their valorized status as Sandinista war heroes. But, if anything, it is certain that they will actively utilize the identities available toward their best advantage as they either forge ahead or fall back in tactical retreat.

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6 Innovation at the Crossroads

law as reality, law as desire I believe that the Mayor’s Office alone does not have a sufficient budget for all [the needs of persons with disabilities]. They have a list of priorities, for example, people with unemployment, single mothers, children in the street, the people with AIDS, and people with disabilities. But it is a lot, I believe that they do not have sufficient financing for the streets, for the trash, for all. . . In the perspective of the international organizations, their professionals and the people and the leaders with disabilities that are in America and Europe – that in the United States when they have a new benefit, they have a Government with the sufficient funds and then the law does not only have the meaning of a desire. I believe that here the law is a desire or an objective for the future because you need to wait for the capacity. . . They [Western countries] can rapidly carry out a law. When an American person is thinking about the meaning of a new law, for example in Nicaragua, they believe that the words are a reality. But that is not [true] here. Right, it is impossible, yes?

As Luis, the president of the Association of the Blind and cochair of the Comisión Departmental de incidencia y sensibilizacion de personas con discapacidad (Departmental Commission for Advocacy and Awareness – CDIS) spoke, I thought about the popular motto and often-used title: “Turning rights into reality!” It is used for women’s rights, children’s rights, indigenous people’s rights – any kind of rights, especially human rights (see, for example, Leri 2018; Moon 1996; Muscroft 1999). In virtually all of these usages of “rights to reality” is the idea that states must be held accountable for implementing new laws – rights – and that, in turn, makes rights a concrete reality in the lives of heretofore marginalized people. This formula, obviously, is the motivating idea behind Article 33 (Monitoring and Evaluation) in the CRPD, which clearly states that civil-society organizations representing persons with disabilities will monitor (i.e. hold accountable) states parties’ implementation of their rights. The negotiators of the Convention obviously embedded it because Downloaded from https://www.cambridge.org/core. Access paid by the137 UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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they wanted the CRPD to have teeth. For many of the leading disability-rights advocates behind the Convention, they had seen the power of advocacy in their own lives and their own countries. Over the years, persons with disabilities had rallied together, not only forcing legal change, but constantly organizing in the face of governments’ attempts to slow-walk implementation or roll back rights through budget reduction efforts. But, importantly, their experiences had all been in states far wealthier than Nicaragua. The “rights-to-reality” formula does not make an exception for “capacity” like Luis does. Even in the more nuanced and alliterative report, blog or article title, “Rights: rhetoric and reality” (see Haydon and Scranton 2009), the argument can always be summarized in the same way – advocacy results in states implementing rights – with the caveat that when governments do not implement change, marginalized groups need to redouble their efforts to hold public officials accountable for having given them lip-service in lieu of taking action. The underlying assumption is that unimplemented rights are caused by lack of political will, not lack of resources. Again, Luis, in his argument that Nicaragua would “need to wait for the capacity,” seemingly contradicts this sentiment by giving the Mayor’s Office the benefit of the doubt by listing the multiple priorities that they must balance with a tiny budget. The phrase “rights to reality,” however, is as ubiquitous throughout the disability movement as in any other campaign (see, for example, Vanhala 2010), regardless of what grassroots leaders like Luis have to say. The motto has also been used successfully in the very recent past. For example, the Labour Party in the United Kingdom used Making Rights a Reality for Disabled Persons as the title of their disability platform in 2012. Through it, they were able to mobilize local DPOs to join them in demanding that the Conservative government “renew the universal in the universal welfare state by turning rights into reality” (Labour Party of UK 2012: 11), which meant not cutting disability services in their attempts to roll back the National Health Service’s budget. The success of a similar campaign in Nicaragua, however, is questionable, given that there is no modern, universal welfare state nor has there ever been. The development of one that in anyway reflected what the UK has now, or had at its height, is equally questionable given that Nicaragua’s GDP per capita is one twenty-fourth the size of the UK’s. There will be no capacity – or at least no tax base – for developing a welfare state in Nicaragua for the foreseeable future. The rights-to-reality formula, however, is a powerful myth that permeates the international disability-rights field and is actively disseminated to grassroots disabledpersons’ organizations around the world. For example, Disability Africa organized its 2017 conference Pan-African Experiences of Autism: Transforming Rights into Reality – A Practical Conference under the “rights-to-reality” label. The plenaries and workshops at the conference, which was underwritten by the British Council and Stepping Forward, a UK-based disability-rights NGO, were all focused on promoting legal advocacy as a necessary practice for local DPOs to engage in if they wanted to see change (Stepping Forward 2017). Another example, among many, of this Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

Law as Reality, Law as Desire

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model for DPO practice being globally disseminated can be found in the extremely broadly distributed UNICEF booklet It’s About Ability, which explains the Convention on the Rights of Persons with Disabilities to persons with disabilities around the world in more than a dozen languages. In one section, the booklet juxtaposes the statement “If you are disabled, this Convention gives you, your family and the government of your country the tools necessary to realize your rights and your dreams” (UNICEF 2008: 17) right next to a text box with a quote from an international disability-rights advocate stating: “Fight for your rights and others will fight with you!” The implication is clear: dreams come true, but only if you are willing to fight (i.e. advocate) for them. That is the only way that rights get turned into reality. Luis, however, found this message absurd – or at least something “impossible.” He believed that legal words would remain a “desire,” and not become a lived reality in Nicaragua given (the economic) situation that determines what the law could actually do. What is particularly important regarding Luis’ critique is that he was someone who knew the law extremely well. Advocating for the law was his livelihood. During the interview that day regarding the expectations of “people and leaders with disabilities in America and Europe,” we were sitting in his law office, which was located just a block from Segovia’s Central Plaza and City Hall – the very place where CDIS had carried out many of its campaigns, many of which resulted in new city ordinances promoting disability rights that the mayor and city council gladly signed. Yet, as I learned, Luis saw that passing laws such as these could be a waste of time because there were far better ways to change the lived reality of his association’s members. Yet he had carried out these advocacy activities at the behest of the Disability Rights Fund grant, which was coming to a close. I would also see in the coming months that, to his frustration, Luis would learn he still had to continue to focus on legal advocacy if he wanted the Association of the Blind or CDIS to be eligible for international funds. The global expectations that local DPOs need to advocate is an organizational norm in the field that is not only promoted top-down, from the Global North to grassroots associations in the Global South, but horizontally across the field of international development. That means that increasingly, whether a grassroots DPO solicits funds from an international disability-rights NGO or from a mainstream humanitarian or poverty-alleviation NGO, the result is likely to be the same. The Disability Rights Fund, for example, was actively trying to influence mainstream international funders to promote disability-rights advocacy in their programming. To wit, in a guide DRF developed for mainstream international donors, the very first paragraph states: “Much more is needed to be done to make rights a reality for persons with disabilities across the globe” (my emphasis; Wapling and Downie 2015:11). That opening statement is then followed by an overview of the CRPD and the exhortation that funders assisting persons with disabilities should not fund rehabilitation services or other “charity” programmes. Instead, the guide explained, Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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they needed to use a human-rights approach that develops grassroots capacity among DPOs to hold their governments accountable to their rights. This recasting of the role of international funders reflects a now decade-long trend merging human-rights work with development work (see Uvin 2004). Put simply, it is the idea that the best way to promote development is to engage those in need of development (i.e. marginalized groups) in advocacy directed at their states. The irony of this policy in terms of funding, however, is that while it may increase the claims-making of marginalized peoples, it effectively decreases the resources available for many of their basic needs and human-capital investments. This trend is well established across fields. In many cases, the fields of human-rights advocacy and development-project implementation have effectively merged (Nelson and Dorsey 2008). What this means concretely is that ‘where once NGOs concentrated their work on establishing projects to do things like build water supplies or encourage income generation, the same NGOs have increasingly devoted resources to advocacy campaigns (Rugendycke 2007: 2). In many ways, the international disability field, which was once dominated by rehabilitation organizations, has led the charge. For example, almost immediately after the adoption of the CRPD by the UN, a network of thirty-five international disability NGOs, including such large players as HI and the International Committee of the Red Cross, collaborated on a common document setting out best practice for prosthetic and orthotic services in low-income countries. One of the major outcomes of the document was a set of guiding principles stating that international NGOs recognize that “organizations and local programmes need to work with governments to advance disability rights” (USISPO 2011: 2). What this meant in practice was that for many NGOs funds that were once dedicated solely to rehabilitation, and were now diverted to mobilizing local DPOs for advocacy and organizational resources, were no longer being determined by prosthetists but human-rights lawyers. The result in Segovia was direct. For many years, an international NGO had supported a prosthetic outreach clinic for the northern region. In 2007, however, the NGO turned it over to the government to run, which could not afford it (the construction of a “low-cost” artificial limb regularly involved hundreds of dollars), and, after months with no supplies, it closed its doors. The same international NGO, however, was now supporting human-rights awareness workshops, informing many persons with amputated legs about their right to rehabilitation and their duty now to take to the streets and advocate for it.

show me the money The change from directly supporting rehabilitation to supporting rights would seem unconscionable if NGOs fully understood that the resources they stopped providing were not going to be replaced. Instead, many NGOs simply believed that the resources had been there all the time, but the government simply lacked the political will to do the things that needed to get done. In many cases, this “lack of Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

Show Me the Money

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will” was not only attributed to policymakers in government, but to persons with disabilities themselves. Early on in my field work, I encountered a representative for an international disability NGO that was supporting the CDIS coalition. In Chapter 2, I discuss his claim regarding Nicaragua’s lack of a “culture of human rights.” He also spoke confidently about Nicaragua’s capability of implementing everything that the CRPD requires, including major changes to infrastructure, completely new approaches to education and public services, and monitoring of discrimination in the workplace and elsewhere. I had asked him about Segovia’s city government’s ability to do all of these things and he had quickly answered: “They [the government] have the money, they just don’t want to spend it, and they don’t have to. No, because the people here, the disabled people won’t ask for it.” It is important to note that his assertion, that the money is there, is coupled with his claim that local disability groups, including the coalition in Segovia, simply were not pushing hard enough. It would be a lack of logical consistency for him to concede that Segovia may not have the money, but DPOs should take to the streets anyway. Inspired by that original conversation with the NGO administrator and the later conversation with Luis, I wanted to know what the city’s budget actually was in order to know whose scepticism – Luis or the French NGO administrator’s – I should take seriously regarding the local government capacity. The budget was relatively easy to learn and verify because it had been made accessible online by the Sandinista government to promote transparency. According to Nicaragua’s national Ministry of Finance, Segovia’s 2012 municipal government was allocated 139 million cordobas, which converts to about 5.7 million UK dollars. This budget was based on the municipality’s population of 130,000. The amount roughly worked out to $44.00 per resident, which is small, but was more than what an average Nicaraguan earned per week. It also represented a significant amount of tax dollars, given that Nicaragua had recently made many reforms to decentralize government, meaning that the vast majority of social spending went out through municipal budgets. While $5.7 million was a significant amount in Nicaragua, it is a seemingly quite small amount of money in the grand spectrum of things. For example, $5.7 million is less than the annual budget of one of my academic departments at my university – a department that only supports about fifty professors and a few dozen staff, but finds itself under such a budget constraint that it has had to reduce the number of PhD students that it can fund! – yet it was meant in Nicaragua to not only pay for salaries and operating costs of an entire city government, comprising dozens and dozens, but also pave streets, provide clean water, pick up trash, and otherwise serve 130,000 residents in a poor country. After I acquired the 2012 budget information, I met with Segovia’s vice-mayor to gain greater clarity on how the city’s 5.7 million was to be spent. She confirmed that the budget was inclusive of municipal expenses. It needed to cover all employee salaries, the running of the City Hall and other city facilities, and all investments in Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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local infrastructure, placing special emphasis on the city’s desire to pave roads and expand the sewage system. I actually daily witnessed their dedication to these last two as they sought to pave just a few more blocks every dry season, which greatly expanded the number of rounds that remained passable when the rains came. In addition to these initiatives, the budget also needed to be used for dredging the river, an expensive but necessary operation, given that the river had burst its banks during the last winter and flooded a neighbourhood near downtown, destroying dozens of homes and nearly taking out the single bridge that connected the north and south sides of town. After she explained all of those things, I asked her about any money for persons with disabilities and implementing the CRPD and Nicaragua’s disability laws. She said she was familiar with their obligations and that Segovia knew it needed to pay for them. All new construction going forward was to be accessible, but the real problem was redoing everything built in the past and addressing the high rates of poverty in the present. In fact, as a city government, Segovia was required to set money aside within their budget for “special initiatives,” which is what they used for increasing disability access and opportunities. This “special-initiatives” fund, however, also needed to be used for promoting public health, education, sports and culture and protecting all of the other vulnerable populations. I asked how much of that fund was for vulnerable groups? It turned out that the whole “special-initiatives” pool for vulnerable groups was just a few thousand dollars, which needed to be allocated across numerous marginalized groups, which the vice-mayor listed as being elderly persons who had no families to care for them, persons living with HIV and AIDS, children living homeless on the street, poor single mothers, persons with disabilities, those addicted to drugs and so forth. It turned out that “vulnerable population” was an expansive category in a country where 40 percent of the population lived on less than $1.00 a day and a full three-quarters (75 percent) on less than $2.00. The vice-mayor’s list was essentially the same as the one Luis had rattled off in our interview, demonstrating how familiar civil-society-leaders were with the budget, which was openly discussed during city council meetings. What was particularly ironic about this discussion with the vice-mayor is that the small grant provided by the Disability Rights Fund to CDIS for advocacy, which was less than $10,000, was close to the same size as Segovia’s entire special-initiatives budget, yet the DRF grant was meant to put pressure on the city government to use its budget to meet all of its obligations under the CRPD. To that point, however, the vice-mayor wanted to point out where progress had been made, which included a ramp at the entrance to City Hall and several health clinics, curb cuts around the Central Plaza, the distribution of unused city property (empty lots) to disability organizations in need, and a disability-inclusive economic-development programme. To DRF’s credit, the awareness raising had made an impact, although it is unclear how many of these things the city would have done with or without the extra money put into mobilizing Segovia’s DPOs. These improvements in the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

Constructing A New Society

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“reality” necessary for persons with disabilities to enjoy their rights, however, were small, as I continually learned, in comparison to what many of the local disability associations, including Luis’ Association of the Blind, were doing directly for their members.

constructing a new society The origins of the Association of the Blind go back to 1995, when Luis had just returned from Cuba. He had been sent there for rehabilitation after an explosion had blinded him during a battle between the Sandinistas and Contras in the late 1980s. During the 1980s, Cuba, a close ally of the Sandinista government, provided free medical care to wounded soldiers with injuries and conditions that were beyond the means of the Nicaraguan health-care system. While Luis never recovered his sight, he quickly learned to read Braille, use a walking stick and otherwise live independently while in Cuba. His quick learning and independence were recognized by the Cuban government, which then invited him to stay on after his rehabilitation to attend a Cuban university, where he subsequently earned a degree in law. It was during this time that he learned about rights, but also about the responsibilities of citizens, and committed himself to working for persons with disabilities. Well, the first time I heard about “human rights,” precisely, was in Cuba, because in the university where I studied we were taught, in addition to normal classes, classes in the philosophy of rights and obligations of a citizen. From there was born my commitment to other people with disabilities. I had also heard of rights before – at the beginning of the Sandinista Revolution. I participated in the Sandinista Youth [Brigades] and was heavily involved in that kind of a thing. We spoke in trainings, lectures and all of that, of how young people had to participate in a political process and how to participate in the construction of a society. How to be in solidaridad with our communities.

From the beginning, Luis saw rights and solidaridad as linked to one another, rather than in opposition. Rights was just one side of the coin; contributing to society was the other. This understanding then informed the organizational model he adopted when he returned to Nicaragua and learned that there was no mass organization in Segovia for people, like him, with visual impairments. He and several other blind people that he had encountered then decided to found a grassroots association. “I was motivated to join with them [others interested in a group] since I had the possibility of studying in another country, so I wanted to join an association with the purpose of helping other people, blind like me, have that opportunity. So through the organization I wanted to help by creating projects related to education so that they [others with visual impairments] could study.” Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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The association began with sixteen people living in Segovia, but soon grew to over two hundred members, including those living in villages and other cities throughout the region. Since then, other associations for people with visual impairments have been founded in Nicaragua, including a national association with local chapters, but the Association of the Blind has always remained independent and based in Segovia. I asked Luis what the association’s mission statement was. He responded: “Well, I can’t say it from memory, but basically the mission is to help the blind and organize the blind and weak-sighted people to develop their personal, family and social life so that they are integrated into general society.” I later learned the exact language of the official mission statement, which was: “To fight [luchamos] for the integration of those without sight into society.” To “fight” or luchar was a verb commonly used by international disability-rights organizations to connote an adversarial form of political advocacy. The UNICEF booklet, quoting an international advocate saying: “Fight for your rights and others will fight with you!” used luchar in its Spanish-language version. Luis’ original explanation regarding the mission statement and the Association of the Blind’s historical practice, however, represented a different way of “fighting” from the rights advocacy promoted across the international disability-rights field. Instead, it seemed to mean people coming together in a collective struggle to support one another and create new opportunities that allowed them to participate in their communities as students, workers, family members and so forth. Luis explained his commitment to the Association of the Blind as the same as his original commitment to the Sandinista Front – building a better society through solidaridad. In the post-CRPD era, however, building a better society for persons with disabilities increasingly meant having to at least address rights. Throughout my field work, I learned that the Association of the Blind was one of the few groups that were actively fighting to achieve their local objectives while also trying to take advantage of the new opportunities the CRPD could provide.

from micro-school to macro-change In the beginning, the original members of the Association of the Blind were persons with visual impairments who had received an education and were employed, like Luis. But they knew their position in society – as a relatively integrated member of the community – was uncommon among blind persons in general. As such, the original members came together for the purpose of dedicating their free time as volunteers to teaching other blind persons how to read and write Braille, use a walking stick, ride the bus and so forth. This work was done in homes and on the streets of Segovia during the late afternoons and weekends. But, as word about the association grew and they began making connections with people outside of Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

From Micro-School to Macro-Change

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Segovia, it was no longer possible for this small group of volunteers to meet the demand and provide those services to people living outside. It was at that point that they began fundraising and advocating for a permanent office. Within the first couple of years of their founding, the Mayor’s Office allocated a small, vacant three-room building that had been earmarked for a mass organization. Many of these buildings were former headquarters of the National Guard or businesses owned by the Somoza dictatorship’s supporters. After the Revolution, many of the National Guard had fled to Honduras, where they formed the Contra army, while others who were wealthier fled to the United States and other countries that had been friendly with the regime. With their new offices, the association created a “micro-school” with a tiny classroom, four-person dorm and office. This now allowed people from rural areas to live in Segovia for several months to learn Braille and begin to learn the skills necessary for independence (i.e. navigating the streets). By the time I began observing the Association of the Blind, which was about a decade-and-a-half from their founding date, the micro-school was exclusively serving youth because many of the adults with visual impairments in the region had already been served. The education programme had also expanded to have two distinct, but integrated, sides. The first was education within the micro-school. The second was to then place the trained youth or “graduates” in their local “regular” (i.e. not “special”) public school. This was done because learning Braille and other life skills were all done for the purposes of providing persons with visual impairments the tools to then become full participants in their community, including being able to succeed within the regular school system. To provide this support, however, required a certain level of professionalization on the part of the association, including created a salaried position for someone who could both run the micro-school and support its graduates’ integration in regular schools. During my time in Segovia, Lucy was the education coordinator for the Association of the Blind. She was a sighted woman with seemingly endless energy and the ability to build strong relationships with both the students she served and the faculty at more than a dozen schools in the region. During 2010, I visited several of the schools where Association of the Blind members were placed, and spoke with students, teachers and administrators. In one school I observed Carla, a fourteenyear-old girl, as she sat in her desk among the other students in her class taking notes with a Braille peg slate (a handheld board used with a stylus). The Association provided the slate and the (expensive) card stock that it used. When we spoke later that day, she talked about how excited she was to be in school and that she had been nervous the year earlier, when she began, but the teacher and other students had been very nice. A greater barrier, however, had been her parents, who had been nervous about enrolling her, but Lucy had talked to them and now they were calm (tranquilo). Since then, she felt things had been going well.

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I also spoke with Carla’s teacher to learn about her experience working with both Carla and the Association of the Blind. She explained that having Carla in class was not difficult for her at all, especially now that she had support from Lucy: Well, here at our school, we have always included boys and girls with disabilities, including the blind and the deaf. Almost every year we get one. And all the teachers here help them. . . Yes, but we gave classes to these children without any training. You know, there are different types of rhythms of teaching in education. In the case of our disabled students, we give them individual attention, but sometimes we did not know how to evaluate them. For example, I was unaware of the Braille method.

I asked how she learned about Braille, and she stated it was from Lucy: “It was excellent, the training was very crisp and I told Carla [the student] that her homework will now be written and she began to laugh because I told her I would now be able to correct her spelling.” Later, I asked the principle if Lucy had taught her about disability rights: “Recently, Lucy gave me a document and I began to read it: Everyone has equal rights – children, women, elderly, children with disabilities, children without disabilities – all the same rights.” But then she went on to say that while knowing about rights was good, Lucy’s assistance to her by providing “good communication” and helping her find materials, such as books in Braille, had been extremely valuable. In this rural school, it was striking how few resources there were. The classroom I observed, while filled with students at desks, had very little else – a few well-worn books on the teacher’s desk, a yellowing world map on the wall, and a few full-page public-service advertisements hanging like posters on the wall reminding students to wash their hands and cover their mouths when they cough. There were no computers and no library in the school or the town. In other schools, the story was similar. Yet, without this capacity, they were achieving a lot. Despite the teachers seemingly having great interest in the law, they were, in fact, doing much of what the CRPD required. In the lengthy Article 24 on Education, the CRPD states in section 2 that the right will be realized when: a) Persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability; b) Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live; c) Reasonable accommodation of the individual’s requirements is provided; d) Persons with disabilities receive the support required, within the general education system, to facilitate their effective education; Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

Rights Through Solidaridad

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e) Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion. Further down in Article 24 in sections 3 and 4, the CRPD specifies facilitating the learning of Braille and other appropriate measures for persons who are blind, training “professionals and staff who work at all levels of education,” and that the “training shall incorporate disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities.” All of these things were being ensured through this partnership between the local schools and the Association of the Blind. It is arguable then that “rights” had become a “reality” for the blind youth being integrated in schools around Segovia, with one exception: Everything listed in the CRPD article above is specified as the states parties’ responsibility, not civil societies’. As such, the practices implemented in Segovia contradict the “rights-to-reality” formula of states implementing rights in response to civil society holding them accountable.

rights through solidaridad Similar to Los Pipitos’ original recasting of their youth centre as the fulfilment of the human rights of young persons with disabilities in their poster campaign, the Association of the Blind also believed it was advancing the human rights of their members by implementing their education programme. These practices, of course, were rooted in civic participation defined by solidaridad – the norm that civil society contributes towards the realization of shared social goals through their self-help and service initiatives. Luis’ understanding of law as “desire” reflects this approach; laws express a widely shared desire to institutionalize social change. Rights discourse acts in a similar way: saying something is a right is a succinct way of articulating a new vision or goal for society. Human-rights discourse had been central to Nicaraguan politics since the Revolution. While President Ortega was increasingly being criticized in Nicaragua for defying traditional human rights (see US Department of State 2013), such as free speech and abiding by the rule of law, he regularly cast himself and the Sandinista Front as advancing social and economic human rights. During his 2011 campaign, he regularly argued in speeches that “all have a right to education – no one can be excluded from studying!” followed by a list of marginalized groups that the right applied to but had been historically denied (i.e. women, indigenous, campesinos, etc.). He always included persons with disabilities high on the list. In my own conversations with public officials, educators and others, everyone seemed to agree, often with great enthusiasm, with the goal of disability-inclusive education, regardless of how they felt about Ortega or the Sandinista Party. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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In addition to this public rhetoric, Nicaragua’s laws, including its 1995 Constitution, which clearly stated: “Access to education is free and equal for all Nicaraguans” (Article 121), institutionalized the right to education for persons with disabilities. Law 763, which was the new disability law passed in 2011, devoted nine out of a total of ninety-five articles to education, clearly articulating that persons with disabilities have an equal right to “a free and quality education in a system inclusive of all levels of education and over their life course [i.e. lifelong education]” (Article 38). Law 763 then proceeded to specify that right by stating that persons with disabilities shall receive their education through the general education system (i.e. not in segregated settings), receive special education and accommodations as needed and so forth. Much of the language in Law 763 was taken verbatim from the CRPD, ensuring Nicaragua’s national law was fully aligned with the Convention. The Law also specified that the implementation of the right to education was the Ministry of Education’s responsibility. In all these ways, the right to education in Nicaragua was presented in a way that reflected the international disability-rights field’s emphasis on law, rights and government responsibility. Yet, there was a key difference. Rights rhetoric, including the right to an inclusive education, was contextualized within a broader discourse regarding the need for civil society to join the government in making rights a reality. While “making rights a reality” is understood at the international level as meaning that civil society must hold states accountable to implement the law, in Nicaraguan politics, “rights to reality” is understood through the prism of another popular motto: “Cristiana, Socialista, Solidaria” (Christian, Socialist, Solidarity). Ortega, as well as Segovia’s mayor, publicly used this motto in their speeches to recast human rights as a call to arms for civil society. The motto was a succinct way of telling citizens that they had a civic (and Christian) duty to mobilize and contribute towards the development of society as a whole. It culled the idea that “everyone is in this together” and that the only way to prosper – and the only way to make rights a reality – is for all to come together and collectively contribute to the common good. This understanding of rights was not new, but deeply-embedded within the Sandinista Revolution’s organizing ideology of democratic socialism. It was also a part of the Association of the Blind’s organizational DNA. Luis explained it in his account of how he first learned about rights as a Sandinista Youth, and then as a student in Cuba. Rights were paired with the “obligations of a citizen.” Founding the Association of the Blind for the purpose of educating other people with visual impairments like him was a way that he could “participate in the construction of society.” This indicates that Luis, Lucy and many other members of the Association of the Blind contextualized the rights talk that was inspired by the CRPD within a deeply rooted understanding that grassroots civil society, including their own organization, was a resource that they needed to share with the government to help it in making good on its promises. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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This solidaridad practice was vital in the face of the concrete reality that Nicaragua was a resource-poor country. In terms of education, schools, like health clinics and all other public services, were sparsely equipped. I remember on one visit to a hospital where the physician, in trying to diagnose my fever, drew blood and gave me a folded piece of paper and inch of Scotch tape in lieu of a Band-Aid because they were all out. Resources regarding disability inclusion, however, were in even shorter supply and logistically more difficult to get. In Nicaragua as a whole, for example, there were no Braille publishing houses or distributors of assistive devices for persons with visual impairments. There was simply no market, given that even the most inexpensive Braille punch boards and collapsible walking sticks cost $10 to $25 in the United States, a price that in Nicaragua reflected several days – and often more than a week’s – wages for the vast majority of people. That is why the Association of the Blind’s constant work soliciting donations from organizations in North America or Europe was of great value. They were able to develop relationships and access resources that would have proven difficult to others, such as individual schools or even the Ministry of Education as a whole, the Association of the Blind had also built up substantial expertise on how to educate persons with visual impairments and integrate them into schools. There were no degree programmes in special education offered in Nicaragua that I was aware of during my time in Nicaragua, much less education specialized in terms of specifically educating people on support systems and strategies for persons with visual impairments. Yet, the education that Lucy had acquired through personal experience, her own research, and the mentorship of others (i.e. Luis), was arguably superior to anything that she could have been taught in school. These, albeit relatively meagre, resources – both material and intellectual – collected by the Association of the Blind were put to good use, not only by the Association, but also by the local state. I learned from Lucy that not only was she in regular contact with the schools where she had placed students, but that she was also in regular contact with the regional office of the Ministry of Education. During one interview she explained: “The Ministry of Education is starting a process for the right to inclusive education, but they did not know how to train teachers, so if they have blind students, they have no idea of the [disability-inclusive] system. So now we [the Association] are giving trainings and talking to teachers on how to handle things in the classroom.” She went on to explain that the Ministry and the Association were working cooperatively towards the goal of providing weekend training whereby the Ministry would bring together teachers and administrators, and then Lucy and members of the Association of the Blind would provide basic training and talk about the importance of it as a human right. Luis was adamant that education was the key to social integration, seeing it as the “first right” that all others followed. The education initiative, while increasingly incorporating rights language drawn from the CRPD, still remained firmly within the tradition of solidaridad, whereby civil society supported the state in achieving a shared, societal goal. By looking at the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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ways in which the right to education was interpreted and put into practice by a grassroots association, the organization’s history is brought to bear, demonstrating how organizations like the Association of the Blind “interpret change [CRPD and globalization of norm of inclusive education] in the institutional environment based on how they have defined their prior experience within that environment” (Everitt, 2012: 205).

bicycles and bread The education programming performed by the Association of the Blind represents a way in which the right to education was being recast to affirm already established organizational practices. The Association of the Blind’s approach to the right to work, however, led to something new, whereby the different local and international models for DPOs creatively came together to incorporate practices drawn from both (often opposing) sets of norms regarding civic participation. In this way, the jobs programme represented a case of “bricolage” (Binder 2007) where two institutional fields blended together to create something entirely new. It began, however, firmly within the local field of grassroots solidaridad associations, and only began to bring in rights-advocacy practices after the CRPD was adopted, which created a new opportunity for advancing employment through its framework. From the very beginning, Luis and other founding members of the Association of the Blind knew that employment would need to be a major activity for their newfound organization. In Segovia, as elsewhere in Nicaragua (and much of the rest of the world), persons with severe visual impairments were not expected to work, therefore little was invested in their educations and skills-development by their families or through the state. There were occasional instances of people who were blind learning a skill and generating the income necessary to significantly contribute to their families or support themselves, but the vast majority were often full dependents on their relatives and the larger society. Indeed, during my entire time in Segovia, three older blind men stood daily in a row on the main street with their hands outstretched for begging, accepting cordoba from persons passing by. They were such a fixture in Segovia that I asked Luis about whether he had spoken to them and he explained that he had on multiple occasions, but they never joined his association or participated in any of its initiatives because of their “preference” to stay with what they had (i.e. begging). The attitudes of those three older men, however, were the very thing that the association had set out to change, finding real success with younger generations of people with visual impairments. Luis’ original premise was that when blind people were educated, more opportunities, including jobs, would follow. That had been his case, where his rehabilitation and learning of Braille led to a university education in Cuba and the eventual establishment of his law practice in Segovia upon his return home. But Luis learned that he was an exception. During the first decade of the Association of the Blind, Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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dozens of members were educated in Braille and life skills and then eventually integrated into local schools where they could complete their education, yet not more than a handful of those members became formally employed. Some did help out in families that had their own businesses or were subsistence farmers, but virtually none succeeded in being hired into a waged position. The association’s first foray into formal employment began with a donation of bicycles in the early 2000s. A European mission group stumbled upon the Association of the Blind during a trip, and subsequently decided to make a donation of used bicycles with the hope that the Association could sell them for fundraising purposes. Many of the bikes shipped over, however, were in disrepair. Thus, Luis sought out volunteers who knew how to fix them. The task was so large, however, that they eventually decided to offer them a small salary drawn from the sales profit, with the stipulation that the repairmen, who were all non-disabled people, train some of the micro-school’s students on how to repair the bikes on their own. That initiative came at the same time that the City Hall made another small building available to local solidaridad organizations. The Association of the Blind applied and managed to acquire it – a one-room building by the town market that was perfect for a workshop and sales. The workshop, which was within easy walking distance of the association’s micro-school and office, soon opened with several repairmen paired with blind youth, who soon became skilled at balancing wheels, tightening gears and other maintenance basics by listening and feel. As the original donation of bikes was repaired and sold, the workshop also began taking in other bicycles for repair and selling spare parts. Soon, it was employing six people, half of whom were blind, and generating a small income after the six salaries were paid for the association’s activities, including the school. While the repair workshop was a success, including demonstrating to the community that persons with visual impairments could work, it only employed a handful of members, leaving dozens more in need of a placement. The next opportunity came when the uncle of one of the most recent members to graduate from the micro-school approached Luis regarding the possibility of someone training his nephew to work in his bakery. The bakery was large, selling many loaves to area stores. It was around this time that Lucy, who had been hired using the bike-shop profits, had begun working in the micro-school and supporting graduates’ integration into their community schools. When she heard about the opportunity, she decided to go down to the bakery and spend a couple of days trying to understand all of the positions and how they worked together. She eventually decided that packing loaves and rolls in their plastic bags and stacking them in trays to be sent out for delivery was a suitable position, so she first trained herself for the position and then brought in the nephew and had him work alongside her for a week until he had mastered the task. His success led to the uncle inviting the association to send other young people for placement. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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give me an opportunity to work The success of these first two endeavours, however, led Luis and Lucy to identify a much larger target: the dozen tobacco factories surrounding Segovia, including those in its Free Trade Zone. These factories were by far the largest employers in the area and, as large enterprises, they not only paid a relatively high wage for Nicaragua, equivalent to $130 US per month, but also paid benefits, which was a rarity. Immediately, Lucy went to work by visiting one factory after another, but soon found that there could be intense resistance. According to Lucy, the harshest resistance came from foreign owners and operators, who simply had no interest in even considering hiring someone who was blind. She then decided to target only Nicaraguans who had been hired by factories as managers or in other senior roles. This, according to Lucy, allowed her to build a relationship with them and eventually appeal to their “values” (i.e. the culture of solidaridad). She would often invite them to visit the micro-school, bicycle workshop or bakery to see for themselves what people with visual impairments could learn to do. Eventually, her strategy paid off and she was told that if she could train someone to roll cigars, the job was theirs. Once again, Lucy went about her work, first learning how to roll cigars herself and then spent a week providing hands-on training to one of the Association’s members in the factory. Once the new placement was able to prove that he could roll as many cigars as anyone else, Lucy was able to garner more positions for the Association of the Blind. Managers and fellow workers were often impressed by the blind workers and often commented that they were better and more disciplined than the other (non-disabled) workers. With this feedback, Lucy developed her motto, which she spread to the Association’s membership: “Give me [a person with a disability] an opportunity to work and you have given me a part in the development of your business” (Dame una oportunidad laboral dejame ser parte el desarrollo de tu empresa.). She felt that the best argument was to appeal to the idea that hiring persons with visual impairments made good business sense because her “more disciplined” workers directly contributed to the company’s bottom line. Once Lucy had gotten a few people employed as cigar rollers, she began to expand into other positions, including other areas on the line, such as unfurling the tobacco leaves that came in from the fields and wiping them down with wet sponges to remove the dust before they were sent to be rolled. She also began recruiting regular employees (i.e. without visual impairments) to help her with the training by assigning them as “buddies” to a new placement and giving them advice on how to support their work. For many Segovians, working with one of the Association of the Blind’s members became a source of pride. It was a way where they felt they were contributing towards making Nicaragua a society where everyone was included. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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As with her rounds with schools, I also joined Lucy on her regular visits to factories. At an American-owned factory in the Free Trade Zone, I visited with five different members of the Association of the Blind, who were working at various points in the manufacturing process. One, who had been there just three weeks, was shaking out tobacco that had been packed hard in bunches. Then, he threw the bunches in a large container that was picked up by a forklift and taken into the next building, which was a preparation room. As we walked, Lucy and I discussed unemployment in Segovia. She explained it was a big problem for everyone and that just fifty percent worked in the formal labour market. She also said that the tobacco factories were a good opportunity because there was a lot of turnover, which opened up positions, and it paid a good wage (i.e. $130 per month). In the preparation room, a young man worked at a long table, where he wiped down tobacco leaves. He was still relatively new and was paired with another worker. I asked his “work buddy” about the relationship and he simply replied “He has a right to work, like anyone else.” I then asked about what he, the buddy, had learned. He explained that once he was paired with someone with a visual impairment, he began to look at the factory differently. “This is a dangerous plant! Low hanging boards and beams, open sewers, moving trucks! I have discussed all of this with the manager and he has made things safer. But, I still tell Fernando: Careful! Careful! [Cuidado! Cuidado!] There are more improvements that are necessary.” The manager, who had been listening in, pointed out where some of the changes had been made, including moving objects off the factory floor to ensure a clear path. The final positions included a young man sanding down wooden cigar boxes and a woman filling them with cigars and stacking them to be picked up and prepared to be shipped out. Those two had been in the factory for more than two years apiece.

jobs, jobs, jobs for everyone! The job-development project went on for more than three years before Lucy heard about the CRPD and the right to employment for persons with disabilities, at an awareness-rating session conducted by an international NGO. When Lucy and I first spoke about the Convention in the summer of 2010, she explained that she was not surprised to learn that employment was a human right, given that everyone in Nicaragua already knew that employment was a right, going back to the Sandinista Revolution. She was, however, impressed that an international document (i.e. the CRPD) included employment as a right, citing her prior belief that in North America (i.e. the United States) people did not have economic rights. She seemed to be implying that Nicaragua was ahead of its time and now the international community was starting to catch up. Article 27 on Work and Employment states that it is the “right of persons with disabilities to work, on an equal basis, with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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and work environment that is open, inclusive and accessible to persons with disabilities.” The lengthy Convention article goes on to include, among other things, “access to general technical and vocational guidance programmes, placement services and vocational and continuing training” as part of the right. It was the “placement service and vocational” training, specifically, that Lucy believed the Association of the Blind was implementing through their project. Of course, as with all of the rights enumerated in the CRPD, the responsibility for implementation falls upon states parties, not civil society. But, to Lucy, she was again impressed that the Association of the Blind had locally developed a “place-and-train” system before they learned about it from the CRPD. During the workshop on human rights, which was attended by all of the disability associations in Segovia, Luis and Lucy explained their “place-and-train” system to the other participants. Soon Alfonso, Humberto, Fatima and the other leaders of the local grassroots associations wanted to participate, and Luis agreed that the Association of the Blind would begin helping their members too, which resulted in Lucy placing several of ADIFIM’s members in a tobacco factory the following month.

together at last: service and advocacy While the Association of the Blind saw their “place-and-train” initiative as already fulfilling the employment rights embedded in the CRPD, they also saw that the right offered a new opportunity. In particular, Luis, Lucy and other leaders participating in CDIS saw the CRPD as an international document that could be used to go after the foreign-owned firms in town – the tobacco factories – that had thus far resisted the integration of persons with disabilities in their workforce. The number of persons with disabilities in need of a job was far larger than the number of positions available from the more open Nicaraguan-run factories with which Lucy had built a relationship. Up to that point, she had placed several dozen members of the Association of the Blind and, in the months following the meeting, when Luis expanded the programme to be cross-disability, only a handful of members from the other associations. The majority of currently participating factories employed three or four persons with disabilities, with only one notable exception, which employed sixteen. During a monthly coalition meeting in 2010, the members of CDIS noted that not only the CRPD made employment a right, but Nicaragua’s new national disability law Ley 763 had made inclusive employment a duty for employers had to abide by. Luis and Alfonso suggested to the other leaders that they arrange a meeting with the local office of the Ministry of Labor to discuss Law 763’s implications for their members. They opened this meeting to all of the disability associations and me, allowing me to join Luis (Association of the Blind), Alfonso (ADIFIM), Humberto (ADRN), Vicente (ORD) and Fatima (Organization of Women with Disabilities). Los Pipitos and the Association of the Deaf did not attend, as Los Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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Pipitos’ administration had entered a period of turmoil and the twin sisters who ran the Association of the Deaf had family and work obligations that day. Once we had squeezed ourselves into the Ministry of Labor’s tiny, two-room office in Segovia, we began by reviewing Article 36 of Law 763. The aspect that the coalition was most interested in was its statement that in “national, municipal, state and private organizations and businesses that have fifty or more employees, must include at least two per cent of persons with disabilities in their respective positions.” With rare exceptions, the coalition knew that no large employer had met this quota. The representative from the Ministry asked if they had confronted any of the businesses. At this point, Luis explained: The law requires these employers of a certain size to have one or two per cent of their employees with disabilities, if not, they must pay a fine (una multa). Mentioning that [the fine] is always a delicate matter for our groups [the DPOs] because we do not want a confrontation. I think it is better for the Ministry of Labor to apply that aspect of the law.

The representative thought about it for a minute, and then responded: “Well, yes, I see I must begin to inspect the businesses to see if they are following the law.” She then paused, and continued: “I think that we must educate them about the different ways to employ persons with disabilities, no? They may not be familiar.” Luis then went on to explain the Association of the Blind’s place-and-train programme. Alfonso followed, in his usual manner, by pulling out a highlighted copy of Law 763: “They must also know the law! We must teach them the law of employment.” The representative from the Ministry agreed and the meeting began to wind down with the exchange of mobile-phone numbers and agreement to meet at a later date. Then, suddenly, the representative thought of an additional plan. She suggested that the coalition contact the Mayor’s Office, which had recently created a new employment initiative for which she was on the advisory board. The initiative, which was called APROE (Agencia de promocion economica local), had recently received some resources from Segovia’s Dutch “sister city” for creating incomegenerating opportunities for “vulnerable groups.” The representative mentioned that the board also included solidaridad organizations, and therefore the disability groups ought to join. “They [APROE] do not know the techniques for training persons with disabilities. Your knowledge is necessary for them.” She also explained it would be a good opportunity to make connections because many of Segovia’s largest employers, including the local Chamber of Commerce, were also participants the advisory board. A few days later, Luis and Alfonso (with me tagging along) met with Sonia, the director of APROE. Sonia was an energetic woman who greeted us with enthusiasm. She had apparently been thinking about ways of including persons with disabilities for a long time. One of APROE’s first projects had been fostering sewing cooperatives, of which several women with disabilities originally from the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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Organization of Women with Disabilities (ODIFOM) had already joined. She had also hired an assistant, Edgardo, who had been a past local employee of HI, which had closed its office in Segovia a year before. He was very focused on labour law and policy, with particular concerns that workers not be exploited in the Free Trade Zone. APROE was the brainchild of Segovia’s popular and populist Sandinista mayor, Poncho. He had created this office with the help of a small grant that Segovia’s “sister city” in the Netherlands had given to promote microcredit and incomegenerating projects for the very poor – a category that the Mayor’s Office interpreted liberally to include all of its priority groups (i.e. single mothers, elderly, street children, disabled persons, etc.). When I interviewed Sonia on another occasion, she described APROE’s accomplishments to date as having provided sixty people with job training, financially assisting the start of three cooperatives, and having helped nineteen women-owned businesses. She summarized this list of accomplishments as “progressing everyone’s economic rights,” particularly because the beneficiaries had been very poor. She had also met several times with a US-based horticulture firm that held the potential to generate five hundred permanent jobs and nearly a thousand additional temporary jobs. APROE had offered to help with the recruiting and training, which Sonia saw as an opportunity to include persons with disabilities, but the US business proved more interested in tax breaks and financial support, which were things that neither APROE nor the Mayor’s Office as a whole were equipped to provide. Most importantly for the potential partnership for persons with disabilities, APROE regularly organized community meetings for local employers on topics related to the initiative’s goals and labour law and policy. The latter topic was done in coordination with the Ministry of Labor. With those two meeting, rights advocacy and service provision were drawn closer together. The Ministry of Labor would inspect the factories according to the new disability law, but she would use that as an opportunity to connect them to the placeand-train services the Association of the Blind was providing. Equally importantly, the coalition was being offered a voice at the table in government, but rather than it coming as a result of them holding placards outside City Hall, they were being proactively asked to join because they had concrete services to offer. In many ways, there was nothing new about the relationship between civil society and government; during the Revolutionary period, where solidaridad associations ended and the state began was a blurred, if not entirely erased, line. What was different, however, is that monitoring the implementation of a law was a central component to the partnership. Rights were advancing, both legally and in reality.

law and spirit In the subsequent weeks, Lucy began receiving more calls from employers than ever. Many of these callers were to ask for her services, but a significant number Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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were from employers who had questions about the new disability law, especially about the quota, and concerns that they would be unable to create jobs that person with disabilities could do. For the latter part, Lucy would explain that persons with disabilities could “do anything,” an assertion often met with scepticism, if not outright disbelief. The CDIS leadership (Luis and Alfonso), APROE, and the Ministry of Labor began to plan a series of workshops and meetings at the City Hall on the basis of Lucy’s reports on the calls to which they could invite Segovia’s employers in order to teach them about the law and show them that disabled people could, indeed, learn to be productive workers with the right support. In the beginning, typical meetings were run by Alfonso and Humberto, the leader of the local chapter of the Nicaraguan Association of Disabled Resistance (ADRN) – ex-Contras injured during the civil war – from CDIS and Edgardo, the former HI employee now working for APROE. All three understood the high level of unemployment among persons with disabilities as a matter of discrimination and the failure of the government to enforce the law. For members of the ADRN especially, finding steady work could be difficult, because of public resentment that they had fought on the “wrong side” of the Sandinista Revolution and now the Sandinista Party was again the party in power, and thus the keepers of the law. For Alfonso, who led ADIFIM, the disability group most focused on the law, and Edgardo, from APROE, they simply felt that the general public needed better information regarding disability rights and legal mandates. This led to several meetings where employers were subjected to lengthy PowerPoints detailing the nuances of the UN Convention and Nicaragua’s Law 763. Eventually, Luis and Lucy began to suggest that, as an initiative, they needed to speak more directly to employers’ practical concerns (i.e. how to integrate persons with disabilities in practice). As such, the Association of the Blind took the lead on planning an event that highlighted workers who had already been placed in jobs. The largest event between CDIS, APROE and the Ministry of Labor was a study tour that took place in July, 2012. Close to thirty business owners, leaders of civil society, and directors from various local agencies met in the auditorium of Segovia’s City Hall. The wall was festooned with a banner that read “Recognize and promote the right of persons with disabilities for Employment and Dignity through awareness and carrying out law 763.” Alfonso and Humberto kicked things off by making a short speech, where Alfonso read long quotes from the CRPD and Nicaraguan national disability law and Humberto explained that persons with disabilities in Segovia were discriminated by work places. He attributed this to the false belief that persons with disabilities could not work, an idea that could not be further from the truth. A city council member then took the stage and thanked everyone for attending. He explained that he was also a person with a disability, placing his hands on either side of his thigh to draw everyone’s attention to his prominent limp. I later learned that he had sustained the injury as a Sandinista soldier during the Contra war. The Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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city council member’s speech began in earnest with the argument that: “It is important to be inclusive because anyone can become disabled – from a sickness or an accident.” He then went on to discuss the idea that Segovia wanted to create a network of economic and physical inclusion because disability was a major socioeconomic problem. This followed by him affirming their commitment to the law, but then naming all of the organizations represented in the room – the local hospital, the CDIS coalition, tobacco manufacturers – which were the potential nodes to this new network of inclusion that he envisioned. He then gestured to the banner hung behind him and explained: “The law without spirit, and volunteerism, and everyone supporting it cannot function or advance.” In short, there would be no rights without solidaridad. We were then separated into smaller groups, and loaded into vans waiting outside and sped off. My group stopped at a large workshop on the edge of town producing wooden cigar boxes. There were two people with visual impairments in the assembly room gluing together the bottoms and sides, while another blind person up front was attaching those boxes to their folding tops. Further down in the workshop in a separate room, there was a young man with kyphosis (curvature of the spine), using a circular saw to cut long sheets of lumber into the requisite cigar-box pieces. As a group, we stopped and chatted with him. He had originally learned to do woodworking at Los Pipitos, which later referred him to the Association of the Blind, so that Lucy could make a match. This visit was followed by a ride into the Free Trade Zone, where we visited a cigar factory; here we met six additional persons with disabilities sorting, drying and rolling tobacco. One of the twin sisters who led the local chapter of the Nicaraguan Association of the Deaf waved at us from across the room as we made our way towards her. She smiled brightly and demonstrated how she removed the stems and veins from large, dried tobacco leaves. At the factory, a floor manager, who was accompanied by Lucy, joined the group and answered questions that were asked by several of the business owners regarding the workplace and training. Finally, we headed out to the local office for the Ministry of Agriculture, where we met a middle-aged man using two crutches who greeted us outside. His legs were strapped down in braces. He introduced himself as having an advanced degree (licentiate) in rural economics and had been at the Ministry for twenty-two years. He was now the head of planning for the Segovia office. The day ended with all the participants reconvening in the large auditorium at the City Hall. The business leaders, civil-society groups and government officials quickly broke up into clusters of conversation. Luis and Lucy were easily the most popular participants, as various groups tried to pull them into their conversations and make specific requests for people with disabilities to apply for available positions. One month later, I asked Lucy about any changes since the study tour and she reported that before the partnership between CDIS, APROE, and the Ministry of Labor, she had only placed three or four people a month. Now she was regularly Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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placing a dozen persons with disabilities in new jobs, which was pushing her far beyond her capacity. There were additional employers calling her and inviting persons with disabilities to apply for vacancies. I asked if she thought the UNCRPD or Law 763 was also making a difference. “Maybe there is more awareness. Some employers might be worried about a multa [government fine,” she replied with a shrug, but then she went on to repeat her mantra: “When I talk to the jefe [boss], I only ask that they give me the opportunity to demonstrate that people with disabilities can learn to work as well as any other worker.”

bricolage and barriers to expansion The partnership between CDIS, APROE and the Ministry of Labor represents the complicated relationship that the grassroots disability associations had with the law and the state. The changes in the law, especially Law 763’s articles on employment, were the impetus for the coalition to engage with the Ministry, but the resulting project was primarily defined by solidaridad. In many instances, the law simply sank into the background and the services that the Association of the Blind were providing rose to the forefront. Some employers may have feared that the government would begin to enforce the law (i.e. they might be fined for not meeting the quota), but during the bulk of the conversations I witnessed between Lucy and the plant managers where many of her placements worked, discussions between her and the employer centred on her own knowledge and ability regarding how persons with disabilities could be best trained and supported. It would be impossible to define her civic participation as “rights advocacy,” even though she was assisting in putting the law into practice. The same lack of interest in law seemed to be demonstrated by the persons with disabilities and their able-bodied co-workers who I met along the way. During one visit to a tobacco factory I asked a “work buddy” what he thought about his recently assigned partner. He looked up from the table where they were seated side by side, unfurling and wiping down tobacco leaves, to nonchalantly remark: “He [the disabled worker] has a right to work just like anyone else.” He then turned to the young blind man, patted him on the shoulder, and said: “Don’t worry, I’ll teach you everything you need to know. I’ll take care of you.” The young man smiled broadly and answered: “I know! I know!” At the most basic level, this initiative seemed to represent the best of both human rights and solidaridad. The project rested upon a legal right – the right to work – but achieved that right by providing the capacity necessary to make it happen. In this case, the right to work means helping your co-workers learn their job. In terms of neo-institutionalism, the joint employment initiative represents an instance of “bricolage,” demonstrating how the rules and beliefs, or institutions, of two separate organizational fields can be actively blended together. In explaining bricolage, for example, Binder argues that it is when “real people, in Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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real contexts, with consequential past experiences of their own, play with [institutional logics], question them, combine them with institutional logics from other domains, take what they can use from them, and make them fit their needs” (Binder, 2007: 568). In Nicaragua, persons with disabilities have a right to a job. They also, not incidentally, really need them – poverty is an overriding concern. Lucy, Luis, and even the various government officials that they interacted with recognized that employment was a need and a right long before the CRPD and Law 763, but took that affirmation as a sign that civil society and the state needed to work together. In making that right a reality, however, rights language was transformed from a language of advocacy into a language of self-help, social support and the participation of civil society in building a better nation. It meant that CDIS, rather than marching with placards to make demands from the state, pursued a partnership where they could work together. This recasting of the right of employment into an employment programme exemplifies the logic of solidaridad being used to “interpret change [new laws and new norms for civic engagement] in the institutional environment based on how they have defined their prior experience within that environment” (Everitt, 2012: 205). Given Nicaragua’s economic realities and its government’s lack of capacity, to interpret the right to employment as anything other than an opportunity to mobilize civic resources to assist the government in achieving concrete change would be sure to fail. Following the study tour in July, however, the Association of the Blind was soon overwhelmed by the number of requests to place workers in their factories that they had received. Luis decided that the best way to resolve the situation was by expanding the bicycle-repair workshop, which would in turn provide the additional revenue they would need to hire another job-placement coordinator to assist Lucy in her work. Luis developed a modest proposal to this effect, which outlined the way a few hundred dollars could be used to purchase additional parts and tools to expand their bicycle shop’s workforce. Luis was confident using the profits from the workshop to fund job placement would resonate with international funders, whom he said were focused on “sustainability.” Over the coming weeks, Luis’ proposal did not receive any interest. I asked him to whom he had sent it. It had gone out to international disability rights NGOs such as the Disability Rights Fund, HI and CBM. He had also sent it to mainstream development NGOs, such as Care and Oxfam. No one was interested. Out of these rejections, he was particularly upset with DRF. The advocacy grant that funded CDIS had already ended and his feeling was that the coalition in Segovia had done an excellent job. In fact, he explained to me that over the years they had been supported by the DRF, he felt the coalition and, in particular, the Association of the Blind, had been very responsive to their demands. For example, the grant managers had constantly pushed them further, including organizing disabled campesinos for advocacy. Luis was upset as he explained: “First they wanted us to do advocacy in Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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the municipality [Segovia], so we did. Then they wanted us to expand into rural areas, so we did, even though it was more expensive.” This latter endeavour had cost the association money out of its own pocket, because organizing peasant farmers meant subsidizing people’s transportation and often providing them with a small stipend to make up for lost labour for the days they spent in workshops learning about their human rights. When the grant funds proved inadequate, Luis had used his association’s own meagre resources to cover the gap, out of fear that the DRF would refuse to fund the coalition in the future if they did not do an adequate job. This meant that Lucy and others were even more stretched than normal, and resources were diverted away from the association’s first job, which was to serve their own members, who were focused on education and employment. Now, Luis felt, it was the coalition’s turn to decide what was most needed, which was to help more disabled persons get secure jobs. After his solicitations were universally ignored, Luis finally concluded it was because the international community was only interested in promoting the law. Their [DRF’s] ideas of what they want us [disabled persons’ organizations in Segovia] to do are – Sometimes, we find that we are financed for certain objectives in a particular way that is a bad use of the money, you understand? That is to say they want to pour more into promoting awareness [i.e. rights advocacy], but we want to strengthen the associations internally. Because, look, how are you going to believe in those associations that are advocating if they have no real capacity? There is no logic [to DRF’s funding].

we tried to make rights a reality, but all we got was this lousy t-shirt By the end of my field work in 2012, Luis had still not managed to find a single funder to support the expansion of the bicycle workshop, which in turn could have contributed to placing dozens of additional persons with disabilities in stable jobs throughout Segovia. In fact, none of the seven coalition members had succeeded in receiving international money for any purpose other than disability-rights advocacy. Even in the case of helping the local associations live up to the CRPD’s civil-society mandate, the resources were meagre. The only event that they succeeded in raising funds for was their annual disability-day march. For that event, both international disability-rights NGOs and mainstream funders were happy to provide T-shirts bearing human-rights slogans. For example, the European Union underwrote (and added their logo) to a T-shirt bearing the inscription: “We demand that accessibility standards be compiled” (“exigimos que se complan las normas de accessibilidad”) in their effort to support ADIFIM’s focus on holding the government accountable for implementing Law 763. This T-shirt came on the heels of one underwritten by Oxfam the year before with the slogan: “Vote for the law for the Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:36, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.006

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equality of the rights of persons with disabilities (‘Voto ley para la iequalidad de los derechos de las personas con discapacidad’).” I imagine that there will be many more T-shirts and slogans in subsequent years. I do not imagine the Association of the Blind, or any of the other members of CDIS, however, will ever receive the resources they believe they need to make the rights they are encouraged to advocate for a reality for their members.

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7 The CRPD’s Civilizing Mission

civic participation and the body politic In recent years, neo-colonialism has provided a new lens for disability-studies scholars examining the disability experience outside of the West. The majority of these works argue that disability itself is a social construction of colonizers (see, for example, Ghai 2012; Livingston 2006; Van Trigt and Legêne 2016). As colonial authorities entered new lands and dominated new peoples, they justified their expansion on the basis of their “civilizing mission” to move “backwards” people to a new (and, in their view, necessary) stage of development. Part of the civilizing mission was the introduction of biomedicine, whereby persons with physical, sensory, intellectual or psychosocial differences were identified and made targets for medical rehabilitation, often by institutionalizing them. In many cases, this transformed persons, who had been fully integrated into family and community life, into social outcasts. Much of the civilizing mission was justified by pointing to myths and practices within communities in Asia, Africa and Latin America that purported to show that the people there believed disability was the result of witchcraft, and disabled persons were regularly cast out of families or even killed. Deep anthropological research, however, has shown that these myths and practices were often completely misunderstood (see, for example, Ingstad and Whyte 1995; Talle 1995) and, in fact, persons with disabilities often had greater degrees of participation in their communities than found in most Western societies, including persons with severe impairments being fully integrated into economic and social institutions, such as subsistence farming, animal husbandry, marriage, and child-rearing (see, for example, Connors and Donnellon 1993). Despite a growing cultural sensitivity in both research and international development, societies throughout the Global South, including their beliefs and practices related to persons with disabilities, continue to be portrayed as backward and in Downloaded from https://www.cambridge.org/core. Access paid by the163 UCSF Library, on 12 Nov 2019 at 12:29:59, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.007

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urgent need of change. Many international disability NGOs use these myths for their own fundraising efforts and as justification for their intervention in local communities around the world. A simple scroll through the pages of Action on Disability and Development (ADD) International, for example, reveals an entire webpage titled “Dangerous Myths About Disability. Endangering People’s Lives,” followed by an explanation as follows: “Often these superstitions have lead [sic] to extreme acts of violence, abuse and death of disabled people,” going on to explain their work, which is primarily about supporting disability-rights advocacy, by saying: “Through a network of disability activists in Africa and Asia we are fighting back. . .” The rest of the page highlights some of these “dangerous myths” that ADD’s advocates are fighting, such as the belief that “concoctions made from the body parts of people with albinism make you right” and thus persons with albinism are killed, hacked up, and sold, or “it is also believed that touching a disabled person brings bad luck,” and so on (ADD International 2018b). I am not arguing that there are no false beliefs and exclusionary practices regarding persons with disabilities in the Global South. I am arguing, on the basis of my own research experience in Nicaragua and many other places throughout the world, that the beliefs and practices regarding disability in the Global South, when fully understood, are often no worse, and sometimes superior to, the beliefs and practices to be found in North America and Western Europe. What is more, whereby instances of discrimination and abuse of persons with disabilities in the USA, for example, are rightfully condemned and addressed, these instances today are rarely portrayed as the norm of thought and action regarding persons with disabilities. Yet, when similar instances are identified elsewhere, they are used to essentialize entire cultures and to justify international interventions that not only attempt to change the whole society but also to transform the way in which persons with disabilities, particularly those in grassroots disability associations, understand their daily experience and address their own needs. The Civil Society Mandate of the Convention on the Rights of Persons with Disabilities (CRPD) has become a major motivating force for these interventions and, I believe, is often used as an organizational model against which Disabled Persons’ Organizations (DPO) around the world are measured.

from disabled body to disabled body politic While the medicalization of persons with disabilities continues to occur in this era of neo-colonialism, there is also another paradigm through which persons with disabilities are being forced to conform to some exogenous model, and against which they are rarely able to measure up and be fully accepted. In the past, international interventions addressing disability in the Global South, including places like Nicaragua, primarily focused on rehabilitation. Today, while some of that continues, the international disability-rights movement has sought to eclipse Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:59, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.007

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these projects and programmes by introducing their own, focused on rights advocacy, particularly the ratification and institutionalization of the CRPD in law. What this means, then, is that no longer is it a medical doctor from abroad showing up in a village intent to “heal” and “fix” disabled bodies, but instead members of the international disability movement showing up with the intent to “heal,” “fix,” or “empower” a disabled civil society. The disability movement has long fought to reframe persons with impairments as simply part of human diversity, and thus fully deserving of the same rights, respect and recognition as all other humans to participate in society and live their lives unimpeded. While this ideal has certainly not been fully achieved anywhere, much less the West, it has guided the movement forward. Diversity among forms of civic participation, including persons with disabilities organizing their own associations according to the norms of solidaridad, is not recognized as a right, or deserving of recognition and respect, by the international disability movement. Proposals to expand bicycle repair workshops (Association of the Blind), to use meeting time to conduct self-help and social support “therapy” (ADIFIM), or to educate youth in a responsive environment (Los Pipitos) are ignored, if not actively fought against.

globalizing disability studies and the disability movement Noting that 80 percent of persons with disabilities around the world live in places like Nicaragua – the Global South – Shaun Grech argues that disability studies as a field “remains the arena of the global North,” right down to its “solid white, Western, middle-class foundations,” and that “the global South (real or imagined) remains confined to a space of distance, perhaps even irrelevance, within the Northern-dominated field” (2014: 49). For these reasons, Grech, who is increasingly joined by others (see, for example: Chaitaika et al. 2016; Cutajar and Adjoe 2016; Meekosha 2008), argues that not only is disability studies Eurocentric, but that when it is used as a framework for researching the disability experience in the Global South, its use is tantamount to “epistemic” (Grech 2016) or “scholarly” colonialism (Meekosha 2008). For that reason, they argue that as yet there is no such thing as “global disability studies,” no matter where, and in how many contexts of the world, disability is studied, but that such a discipline is needed. I want not only to second this argument, but also to use it to argue that, just as there is only a Western disability studies being applied to the world as a whole, there is also, in point of fact, only a Western (which has now been internationalized) disability-rights movement, which has, largely through the CRPD, been exported to the world as a whole. Civil societies are diverse. In Nicaragua and, I would argue, in all other contexts in the world, there are specific models for civic participation that address communities’ needs and create paths for vulnerable groups to be a part of local life. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:59, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.007

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Attempting to remake all civil societies into a single (Western) image is a civilizing process. Grassroots disabled persons’ associations are regularly being targeted for intervention to adopt rights advocacy as the sum total of their civic practice. This civilizing process is not simply a function of donors, global networks and international disability NGOs seeking to “do good” around the world and emancipate persons with disabilities from what is mythologized to be dangerous beliefs and practices in their home societies: it is also a function of international law. Diversity comes in many forms. While disability studies as a discipline has, through the lens of intersectionality, sought to move beyond its white, often male, and almost always middle-class origins (see, for example, Ben-Moshe and Magaña 2014), it has not recognized intersections across forms of civic participation. An empowered disabled person is always a rights activist. The disability movement has carried this message forward, succeeding in taking it all the way to the United Nations, where it was institutionalized into international law. The UN CRPD, through Articles 4 (advising on disability policy and legislation) and 33 (monitoring implementation of disability rights) has institutionalized a single, standard set of both formal and informal norms for DPOs that are enforced through grant guidelines, awareness training and myriad forms of technical assistance and “capacity building.” As an international norm, it does not recognize nuance or diversity at the local level; however, persons with disabilities at those local levels are living their lives at that local level, where the way they relate not only to their neighbours and peers, but also to their local governments, are determinative of their lives. Trusting grassroots DPOs to make their own way rather than follow in lock step down a path forged by advocates making their way in a very different locality (i.e. the USA or UK) should be recognized as their right. In order for the disability movement to be globalized, it needs to move away from its international roots. “International” connotes the transfer of models from one country (or set of countries) to another. “Global,” however, is the whole world (Darian-Smith and McCarty 2017). It goes above countries, but also below. It also sees states (and their governments) as one factor, but often quite secondary to families, communities and others, in creating the barriers and opportunities that people experience in concretely enjoying their rights in daily life. People, including persons with disabilities, simultaneously belong to global and local communities (or institutional fields). By demanding that these organizations somehow do the impossible, and belong to just one or the other, robs them of their ability to respond to their members while also incorporating new ideas and aprovechar new opportunities. For all of us who care about persons with disabilities in all parts of the globe, especially those living in such places as Segovia, Nicaragua, we must let them and their organizations take the lead and, rather than dismissing them as somehow backward and standing in their way, recognize that we can learn from them, including the ways that they can add to both human and organizational diversity and teach us, especially those in the Global North, what participation for persons with disabilities and DPOs can (and will hopefully continue to) be. Downloaded from https://www.cambridge.org/core. Access paid by the UCSF Library, on 12 Nov 2019 at 12:29:59, subject to the Cambridge Core terms of use, available at https://www.cambridge.org/core/terms. https://doi.org/10.1017/9781108677783.007

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Index

ABILIS Foundation, 90 Access Living, 11 Accessibility. See Article 9 of the CRPD Action for Disability and Development, 94 Action on Disability and Development, 164 Action on Disability and Development International, 90 ADIFIM, 85 bylaws, 87 mission statement, 89 violation reports, 93 ADRN. See National Association of the Disabled Resistance Agencia de promocion economica local. See APROE American military occupation of Nicaragua, 31 Americans with Disabilities Act, 9 APROE, 155 Association of Parents of Children with Disabilities. See Los Pipitos Association of the Blind, 13 early beginnings, 143 micro-school, 144 Association of the Disabled Resistance mission statement, 126 Association of the Physically and Motorly Disabled. See ADIFIM Binder, Amy, 51, 150, 159, 168 Braille education, 144 bricolage. See Amy Binder Cabezas, Omar, 54 revolutionary leader, 55 founder of Los Pipitos, 55 Cardenal, Ernesto, 28, 35, 38

Cardenal, Fernando, 40 Catholic Base Communities, 38 Catholic humanism, 33 CBM International Internationall Advocacy and Alliances, 70 CDIS. See Departmental Commission for Disability Advocacy and Awareness Centro Juvenil. See Los Pipitos Youth Center Charlton, James, 11 Christian Base Communities. See liberation theology citizenship, 40 liberal citizenship, 5 civic participation, 6–7, 16, 30, 116 civil society Western model, 29 civil society mandate, 10, 12, 16, 49, 161 civilizing mission, 15–16, 20, 47, 163 Comisión Departmental de incidencia y sensibilizacion de personas con discapacidad. See Departmental Commission for Advocacy and Awareness Community Defense Councils, 39, 99 Conference of States Parties to the UN Convention on the Rights of Persons with Disabilities, 59 conscienticization, 117 Contras, 115 early beginnings, 41 Iran–Contra Affair, 41 Convention on the Rights of Persons with Disabilities, 6 Article 16, 104 Article 23, 104 Article 24, 60, 70, 146 Article 27, 70, 153

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Index

Convention on the Rights of Persons with Disabilities (cont.) Article 29, 9–10, 45 Article 32, 127 Article 33, 9–10, 45, 47 Article 4, 9–10, 45 Article 9, 95 definition of disability, 117 CRPD. See Convention on the Rights of Persons with Disabilities Cruzada Nacional de Alfabetizacion. See National Literacy Crusade Cuba support of FSLN, 143 Dansk Handicap Forbund, 88 mission statement, 89 UNIDAD campaign, 90 “decolonising”. See neocolonial democratic socialism. See sandinismo denuncias. See violation reports, ADIFIM Departmental Commission for Advocacy and Awareness, 2, 17, 137 disability discrimination, 123, 129 disability identity, 115, See definition of disability under CRPD Disability Rights Fund, 2–3, 6, 12, 17, 52, 89–90, 92, 104, 112, 139, 142, 160, 167, 169, 176 funding, 14, 52 disability studies, 50, 117 Disabled in Action, 7, 9 Disabled veterans, 119 DRF. See Disability Rights Fund economic cooperatives women’s cooperatives, 109 European Union, 94, 131 ex-combatants. See disabled veterans false consciousness, 78 FECONORI, 132 Fonseca, Carlos, 32 FSLN, 32 2011 elections, 121 early beginnings, 33 gender-based violence, 104 Global Partnership for Disability and Development, 9 Grech, Shaun, 15, 111, 165 groupism, 117, 119 Hallett, Tim, 20, 51, 81 epistemic distress, 76

Handicap International, 2, 6 funding, 52 inclusive education campaign, 69 Making It Work, 2 roadmap for DPO policy paper, 90 training materials, 128 women with disabilities, 103 Heumann, Judy, 7, 9, 11, 59 HI. See Handicap International identity politics, 136 inclusive education. See Article 24 of CRPD inclusive employment. See Article 27 of CRPD institutional logic. See neo-institutionalism International Day for Disability, 5 international disability rights movement, 45, 164 attitudes towards grassroots DPOs, 62 donors, 51, 73, 94, 160 DPO as advocacy model, 45 trainings and workshops, 46 international human rights, 16 intersectionality, 50 Law 119, 132 Law 202, 92 Law 763, 92–93, 125, 132, 134, 148 disability certification, 134 Law for the Prevention, Rehabilitation, and Equity of Opportunities for People with Disabilities. See Law 202 liberation theology, 29, 35 Christian Base Communities, 35, 39 preferential option for the poor, 29 Literacy Crusade, 99 literacy rates, 21 Los Pipitos, 54 early beginnings, 54 mission statement, 55 national office, 69, 72 new mission statement, 72 strategic plan, 73 Youth Center, 57 Making It Work Handicap International, 52, 104 Managua earthquake, 34 manufacturing civil society, 91 Marxism, 33 mass organizations, 39, 42 Meekosha, Helen, 15, 119, 136, 165, 172 Meyer, David, 48 Neo-insitutionalism, 20 Ministry of Labor, 154, 156

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Index Ministry of Education, 58 inclusive education, 149 mutual cooperation. See solidaridad National Assembly, 39 reform, 42 National Association of the Disabled Resistance, 114 characterization as traitors, 116 early beginnings, 122 identity, 114 National Disability Day, 52, 92, 115 national disability federation. See FECONORI National Guard, 121, See Somoza dictatorship National Literacy Crusade, 40, 43 neocolonialism, 15, 165 neoinstitutionalism, 19, 48 bricolage, 159 decoupling, 64 identity, 116 indentity, 102 inhabited institutions, 51 institutional field, 19 insitutional logics, 48 intersecting fields, 19 intersecting institutional fields, 17, 49 socialization, 49 Nicaraguan Disability Act. See Law 763 ODIFOM, 89, 103, 156 disbandment, 105 early beginnings, 105 mission statement, 105 ORD. See Organization of Disabled Revolutionaries organizaciones de masas. See mass organizations Organization of Disabled Revolutionaries, 114 characterization as war heroes, 116 early beginnings, 114 identity, 121 identity as war wounded, 130 relationship to FSLN, 131 organizational change neo-institutionalism, 20 organizational model DPO as advocates, 8 organizational sociology. See neo-institutionalism Ortega, Daniel, 36, 41 reelection 2007, 42 OXFAM, 94, 160 poder del pueblo, 30, 45, 54, 78 political identity, 118

179

Pope John Paul II, 28 popular Church. See liberation theology postcolonial. See neocolonial power of the people. See poder del pueblo Quinn, Gerard, 11 Reagan Administration. See Contras Rehabilitation Act, 9 Rehabilitation International, 10 Revolutionary Period Junta of National Reconciliation, 37, 41 rights consciousness. See legal consciousness sandinismo, 33 Sandinista Defense Committee, 36, See also Community Defense Counsels Sandinista Defense Committees, 38 Sandinista National Liberation Front. See FSLN Sandinista Revolution, 30, 121 continuing influence, 44 third way, 36 Sandinista Revolutionary Period, 3, 28 Peace Accords, 121 Sandinista Youth, 38, 143, 148 Sandino, Augusto, 31 sandinismo philosophy, 31 Save the Children, 73 self-help. See solidaridad sexual and reproductive health, 104 social model of disability, 7, 115, 135 solidaridad, 1, 3–5, 33, 42, 45, 55, 83, 143, 147 civic identity, 19 organizational model, 45 solidaridad citizenship, 51 Somoza dictatorship National Guard, 32 Tachito (Tacho) Somoza, 31, 33, 37 Stein, Michael, 10 stigma management, 120 Stinchcombe, Arthur organizational imprinting theory, 111 Superior Council of Private Initiative, 36 Terceristas. See Sandinista Revolution UNCRPD. See Convention on the Rights of Persons with Disabilities

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180

Index

UNESCO inclusive education best practice guidelines, 61 literacy Prize. See National Literacy Crusade UNICEF, 73, 139 Union of the Physically Impaired Against Segregation, 7, 117 Manifesto, 7 UPIAS. See Union of the Physically Impaired Against Segregation

Women with Disabilities Organization. See ODIFIM Wounded Warriors. See disabled veterans young people with intellectual disabilities. See Los Pipitos Zola, Irving, 118

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