The UNCRPD is unique amongst international rights instruments because it empowers civil society organizations to represent the rights-bearers themselves—persons with disabilities. As such, DPOs in the Global South have become a major concern for UN agencies and international NGOs who believe that grassroots disability associations need political advocacy training in order to take up their role as rights advocates. These expectations contain implicit assumptions regarding civil society-state relations and the existence of governmental capacity. The authors, however, hypothesize that not all civil societies will fit the rights advocacy model due to the political culture and public resources available within their respective, local communities. Disability movements in Nicaragua and Uruguay are compared and contrasted. In Nicaragua, a disability rights coalition dismisses many international expectations in favor for continuing to follow traditioal civil society expectations to provide services. In Uruguay, a long history of high levels of social spending and disability organizing enabled DPOs to successfully advocate for progressive laws. The deaf community, however, decided to implement their own, separate advocacy strategies to ensure a fairer distribution of public resources. The authors conclude that rather than top-down civil society training, the international movement should allow local organizations set their own priorities.
The passage of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006 was a watershed moment for the estimated one billion persons with disabilities living around the globe. Passage of the UNCPRD represents a major advance in addressing the social marginality of disabled persons, especially in developing countries. It also represents a transition from disability being conceived of as a charity issue to an issue of human rights. Yet, despite the passage of the UNCRPD, the inaugural World Disability Report (WHO, 2011) still found that people with disabilities live shorter lives, have drastically lower levels of education and employment, are far more likely to live in extreme poverty, and are far less likely to participate in their communities on an equal basis with others.
The struggle of turning rights into reality was anticipated by the international disability community. In fact, the UNCRPD itself contains a mechanism for enforcing rights: persons with disabilities themselves. The treaty's General Obligations and several of its articles specifically mention, in text, the necessity of including civil society and disabled persons organizations (DPOs) in the definition, implementation, and monitoring of their rights. This obligation, of course, not only presumes the existence of DPOs and other grassroots disability groups and networks, but that they understand and embrace their role as rights advocates. The idea, simply, is that civil society pressures states and, in turn, states will succumb to that pressure and provide the rights promised as happened in the 1970s and 1980s when the US and Western European disability movement successfully pushed their respective governments to change laws and improve policies (See, for example, Barnartt & Scotch, 2001). This faith in civil society has become a formula for social change currently being spread around the world.
Civil society, however, is a broad concept and even larger reality. Perhaps the simplest way to define civil society is by what it is not: neither government nor business. It is the so-called "third sector" (Corry, 2010; Etzioni, 1973) of non-profit, voluntary associations that range from churches and trade unions through to modern-day universities and transnational NGOs. As such, civil society can encompass the most private aspects of life (expression of religious belief) through to the most public of functions (educating the populous or caring for thousands of refugees). In the context of international human rights, however, civil society is held to a much narrower definition. The UN Human Rights Programme's Handbook for Civil Society, for example, 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, p. iii), reflecting the same understanding of civil society embedded in the UNCRPD.
Not all civil societies, however, are the same. Persons with disabilities have been creating their own organizations for decades. Many of these grassroots associations are just now being incorporated into the international disability rights movement. For some, holding government accountable for the implementation of the UNCRPD is a natural progression in their organization's development and part of their larger society's culture of political engagement. For others, advocacy is the opposite of what they have always done. Many DPOs were founded for the provision of services and social support to their members. To become advocates requires that they redefine themselves and their relationship to the government and to put aside services on which their members depend.
The rights defined in the UNCRPD are universal rights—they apply to all persons with disabilities everywhere. But civil society is something that is particular. No matter how it is defined by international organizations or comes to be embedded within international instruments, civil societies reflect the culture and concrete realities of particular localities. Despite the enormous amount of resources being poured into reshaping DPOs, little attention has been given to why certain DPOs embrace rights advocacy and others persist in service provision. This paper means to provoke research and discussion that can eventually fill that gap. By comparing the relationship between local disability associations and the political cultures and socioeconomic environments that they find themselves in, a fuller picture of why certain DPOs embrace and others resist the expectations for civil society outlined in the UNCRPD can be understood.
Nicaragua and Uruguay have many similarities. Both are small Latin American countries that survived brutal military dictatorships that were eventually thrown off in the 1970s and 1980s only to be greeted with neoliberal reforms and increases in economic inequality. With the turn of the new millennium, however, both Nicaragua and Uruguay have elected former guerilla fighters as presidents (Daniel Ortega in Nicaragua and José Mujica in Uruguay) who not only signified a return to leftist politics, but renewed attention to social rights. As such, both countries were quick to sign the UNCRPD and rewrite national disability legislation. It is there, however, that the similarities end. Nicaragua, despite double the size in population, has a GDP one/fifth the size of Uruguay's. Uruguay is a middle income country with a GDP per capita of $13,510 whereas Nicaraguans get by on just $1,650 (World Bank, 2013). And, despite shared rhetoric on the value of social services, Uruguay boasts one of the largest public sectors in the Americas and a fully functioning welfare state, while Nicaragua relies heavily on international NGOs and local, "popular" organizations to provide many basic services.
While the expectations for disability civil society organizations implicit in the UNCRPD may be the same, Uruguay and Nicaragua provide a useful contrast. Using data collected from the Deaf community in Montevideo, Uruguay in 2008-2009 and data collected from a disability rights coalition in Northern Nicaragua in 2009, 2010, and 2011-2012, civil society responses to the UNCRPD and related international interventions will be compared. While both sets of grassroots organizations received outside trainings on the UNCRPD and the importance of political advocacy, the two movements responded differently. The Uruguayan disability movement used the UNCRPD to continue advocating for rights, as it has for more than a century. In Nicaragua, however, grassroots disability associations did advocate for new laws and even succeeded in their passing, but often relied upon a traditional conception of civil society as service providers in order to meet the needs of their membership, believing that it was impossible for the government to meet its obligations under the UNCRPD. These differences are not indicative of either success or failure in understanding the rights-based model outlined in the UNCRPD, but long entrenched understandings and pragmatic responses to traditional state-civil society relations and basic economic realities.
Universal Human Rights and the need for a new type of DPO
In recent years, the marginality of persons with disabilities in the Global South has shifted from an international humanitarian issue, best resolved through rehabilitation and charitable support, to a rights issue.
This shift came to fruition in 2006 when the United Nations adopted the UNCRPD, which is important for being the first human rights convention of the 21st Century. The UNCPRD is important for another reason: It is the first of the core international human rights instruments to include a specific role for the civil society organizations representing the rights bearers' themselves. A role for Disabled Persons Organizations (DPOs) is outlined in the General Obligations, which state "Persons with disabilities are actively involved in the definition and implementation of their rights, through their representative organizations," and in Article 33, which states that DPOs "shall be involved and participate fully in the [treaty's] monitoring process." No other UN convention includes language establishing a specific role for civil society—neither the Convention on the Rights of the Child nor the conventions on the rights of women or racial and ethnic minorities.
This emphasis on civil society in the UNCRPD is on DPOs as rights advocates, who educate their members and communities regarding their rights and hold governments accountable for the fulfillment of their rights as full and equal citizens. This presumes a particular conception of civil society and a specific relationship between civil society and the state. While governments, who are ultimately responsible for implementing the rights of their disabled citizens, are certainly a focus for the international community, grassroots disability associations in developing countries are expected to play a major role. As such, the failure for the rights in the UNCRPD to be fully realized results in not only pressure on states, but recommendations for increased technical assistance given to DPOs. For example, the inaugural World Disability Report, specifically recommends that "Disabled people's organizations may need capacity building and support to empower people with disabilities and advocate for their needs" (WHO, 2011, p. 18).
Paradoxically, grassroots disability associations in developing countries are seen as both central and as a barrier to institutionalizing the UNCRPD. They are seen as an ally in terms of their ability to exert pressure from below on their local governments. But they are also seen as a hindrance because of their traditional focus on self-help and service provision. Ubiquitous amongst comparisons between Western (or Northern) disability movements and those in the global South or Post-Soviet states is the observation that while disability organizations in the North are concerned with rights and legislation, "In Southern countries, the groups themselves often feel that the most immediate needs are for practical programs of rehabilitation" (Ingstadt & Whyte, 1995, p. 24) and are "calling for meeting their survival needs in a context of widespread poverty" (Turmasani, 2003, p. 3). In a slightly different context, but with a similar outcome concerning the adequacy of pre-existing NGOs in low-income countries, Sarah Phillips (2009), an anthropologist studying the Ukrainian disability movement, states that contemporary coalitions are "plagued by socialist legacies" because "these groups have unwieldy, rather ossified structures and tend to have a narrow focus on shoring up social programs for certain groups of the disabled" (p. 283). In her concluding remarks, Phillips suggests that Ukrainian NGOs need to pursue more international partnerships so that they "participate in seminars, meet fellow activists, and become familiar with different approaches to rights issues" (p. 291).
The traditional focus on self-help and service provision held by DPOs in low-income countries places them at odds with the larger international disability rights movement. The international working group of UN agency representatives and international NGO advocates and experts who wrote the UNCPRD anticipated a disconnect between grassroots associations and the new human rights model before the treaty was even completed. In 2002, the working group was already lamenting that the "disability NGOs [in developing countries] clearly possess the [experiential] knowledge but often fail to engage with the human rights system" and went on to argue that "there is therefore a need for a new kind of disability NGO — or amalgam of NGOs — with a clear mandate to monitor human rights developments around the world…[and to] engage local education programmes on rights and disability" (Quinn & Degener, 2002, p. 179). In order to ensure that this transition from services to advocacy happens, organizations, such as Handicap International (HI) and the Disability Rights Fund (DRF), have initiated global campaigns to "strengthen [people with disabilities'] advocacy to influence social change" (HI, 2013) or "strengthen local stakeholders who can hold governments accountable" (DRF, 2013).
But changing organizations is not so easy, especially if the surrounding political culture and socioeconomic context does not change with them. The UNCRPD is a universal human rights instrument that disseminates norms from the top down. Civil societies, however, are usually from the bottom-up, developing within particular cultures and contexts. The underlying hypothesis of this paper is that certain civil societies will demonstrate a better fit with the model outlined in the UNCRPD and exported by international NGOs. Furthermore, this is not a problem of education or "disability consciousness," but practical adaptations to local resource environments and integration of local norms and customs.
Data collection and methods
The findings from both Nicaragua and Uruguay are from doctoral fieldwork for degrees in sociology and disability studies respectively. The fieldwork in Nicaragua was completed by the first author over the summers of 2009, 2010, and an 11-month period covering 2011-2012 and focused on a disability rights coalition in a sizable Nicaraguan city. The Uruguay fieldwork centered on an in-depth case study of the Uruguayan Deaf community and was completed by the second author in Uruguay from 2008 to 2009 over a 12-month period through in-depth interviews with 14 community leaders and 12 community members, extensive participant observation, and document analysis. Most observations were carried out at the three main Montevideo-based Deaf organizations: (1) ASUR, Asociación de Sordos del Uruguay (Uruguayan Association of the Deaf); (2) CINDE, Instituto Universitario Centro de Invesitgación y Desarrollo para la Persona Sorda (University Institute Center for Research and Development for the Deaf); and (3) APASU, Asociación de Padres y Amigos de Sordos del Uruguay (Uruguayan Association of Parents and Friends of the Deaf).
In Nicaragua, participatory observation was carried out with seven local grassroots disability associations in "Segovia" (a pseudonym), a sizable city in Northern Nicaragua. All of the organizations were members of the Comisión Departmental de incidencia y sensibilizacion de personas con discapacidad (CDIS-Departmental Commission for Advocacy and Awareness for persons with disabilities), a local disability rights coalition. Sixty-nine semi-structured interviews were also carried out with DPO leaders, regular members, and various governmental and international actors.
In both cases, all names of research participants were changed for their protection.
Nicaraguan Civil Society and a culture of solidarity
During the National Disability Day rally that took place in Segovia, Nicaragua in the summer of 2010, the leadership of the departmento's (or province's) seven disability associations sat in a row on the community center's stage. Above them hung a banner, which had just been carried down the length of Segovia's main street at the head of a march, that proclaimed "25 Agosto: Día Nacional de la Persona con discapacidad" along the top, Comisión Departmental de incidencia y sensibilizacion de personas con discapacidad (Commission for Advocacy and Awareness—CDIS, a coalition made up of the seven associations) in the middle, and—untranslated from English—the logo for the "Disability Rights Fund" along the bottom. In front, stood the mayor with a microphone in hand, ready to respond to a short series of speeches from each association in the coalition concerning the UNCRPD. Miss Deaf Nicaragua, a local member of the Nicaraguan Association of the Deaf, had just signed an impassioned speech, demanding the municipality put a sign language interpreter in every classroom; the Association of the Physically and Motorly Disabled had just pointed out all of the inaccessible buildings that needed to be changed; and the president of the Association of the Blind and chair of CDIS, announced the coalition's new objectives for 2010-2011 as placing more members in local cigar-rolling factories and encouraging the city hall to establish the nation's first municipal office for disability affairs.
The mayor began his response slowly by listing a few of his office's accomplishments: wheelchair ramps had been added to the central park and more children with disabilities were now going to school. The Mayor then announced that these accomplishments were insufficient, paused dramatically, and took his speech in a very different direction. Rather than renew promises, make excuses, or outline future plans, the mayor explained that the government could not, and, in fact, should not do everything that needed to be done. Appealing to the grassroots associations sitting behind him, he explained that the people and the government were "brothers." He went on to begin a short civics lesson, not just for the benefit of the disability rights commission, but for the two or three hundred people gathered that afternoon in the gymnasium. The mayor appealed to three words: "Cristiana, Socialista, Solidaria" (Christian, Socialist, Solidarity) and explained that that was what Nicaragua was all about. Indeed, in the plaza just outside and along the highway running by a few blocks away, those words were emblazoned on storefront posters and roadside billboards proclaiming the 31st Anniversary of the Sandinista Revolution. The Mayor went on to explain that the rights of persons with disabilities could only be fulfilled if everyone worked together. The members of CDIS, the disability rights coalition, nodded in agreement (Field Notes, August 25, 2010).
The tension on the community center stage three years ago is emblematic of how Segovia's disability associations have been both literally and figuratively caught at the crossroads of two historic events: the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which was passed in 2006, and the Sandinista Revolution, which occurred three decades earlier. Both the UNCRPD and the Sandinista Revolution have profound consequences for the everyday lives of persons with disabilities living in Nicaragua and the Disabled Persons Organizations that represent them. They are also blueprints for civil society.
Nicaragua is often cited as an exemplar of democratic socialism (Brentlinger 1995; Ruchwarger 1987; Vanden & Prevost, 1993). Having rejected Leninist forms of Marxism, Nicaragua set off on a path that valued "participatory forms of democracy" (Vanden & Prevost, 1993, p. 68). What this meant in practice was that early Sandinista leaders rejected the idea of a state-run economy and centrally administered welfare in lieu of a mixed economy and heavy reliance on voluntary movements to take care of the health and wellbeing of the populace. Civil society organizations, such as Catholic Christian base communities, trade unions, student groups, farming cooperatives, and neighborhood organizations became known as organizaciones de masas or "popular organizations." During the 1980s, more than half of the population belonged to at least one such popular association and often had multiple memberships (Ruchwarger, 1987). These mass organizations focused on "the struggle for economic survival" (Vanden & Prevost, 1993, p. 66) during a period when the Sandinista government was unable to provide even the most basic services. A strong civil society was thus seen as a way for making up for a weak state by taking on the responsibilities to feed, educate, and strengthen the populace.
Perhaps the most heavily mythologized event of the Sandinista Revolution is the Cruzada Nacional de Alfabetizacion, which continues to act as a model for how mass organizations are expected to act(Brentlinger, 1995; Hanemann, 2005). The National Literacy Crusade was originally initiated in 1980 by the Minister of Education, the Jesuit priest Fernando Cardenal, who pointed to the promise of a right to education made by the Sandinista government, but also to the US-imposed economic sanctions and Contra War that were depleting the government's capacity to provide the requisite services. When the Sandinista party took over the government in 1979, the illiteracy rates in rural areas were over 80% and less than 5% of children completed primary school (Brandt, 1989). Cardenal, having virtually no education infrastructure to work with, decided to mobilize teachers unions, university student organizations, and other civil society associations to voluntarily go out into the rural areas to implement his plan to educate the populace. Stories are still told of how young volunteers were fed and housed by farming families, whom they taught to read under the shade of trees in their yard.
It is from this milieu that many of the disability groups in Segovia, such as the Association of the Deaf (Polich, 2005); Organization of Disabled Revolutionaries (ORD), wounded ex-Sandinista soldiers (Bruun, 1995); Los Pipitos, an association of parents of children; and the Association of the Blind were founded. As such, they are carriers of a unique perspective concerning how social justice is achieved in society through the work of civil society. Each organization in Segovia started out as service providers and persists to do so today. The Association of the Deaf teaches sign language to their members; the ORD began building, distributing, and repairing wheelchairs; Los Pipitos began in Segovia as a daycare and self-help group, where parents taught parents how to administer home therapy and eventually became a large youth center; and the Association of the Blind established a Braille school and place-and-train employment program. Many of these organizations have been self-funded, either through donations or from the profits of various enterprises. For example, the Association of the Blind has a bicycle repair shop and Los Pipitos maintains a Spanish language school and carpentry shop.
Following the end of the Civil War in 1990, Segovia established its fifth disability association, a local chapter of the Association of the Disabled Resistance. ADRN was unique in that it represented wounded ex-Contra guerilla fighters returning to Nicaragua following the signing of the Peace Accords. Its original responsibility was to protect their members from political discrimination, but it soon followed local patterns by establishing a rotating fund for microloans and collections and distributions of crutches and wheelchairs to its members.
In recent years, there have been several new civil society organizations focused on advocacy. They include the Association of the Physically and Motorly Disabled (ADIFIM), which solely focuses on educating persons with disabilities regarding the UNCRPD and pushing for the implementation of new disability protections and policies. The ADIFIM chapter in Segovia was established through a workshop held by a Danish disability NGO in 2004 and began receiving funding from the Disability Rights Fund in 2009 (Interview, July 17, 2009). Segovia's Organization of Women with Disabilities (ODIFOM) was also established in that time period through international support. This time, Handicap International hosted a meeting for women with disabilities and told them that women with disabilities needed their own association in order to ensure their voices were fully represented in CDIS that HI was also organizing in Segovia. To that end, the majority of ODIFOM's support in the early years was for workshops on self-esteem and self-advocacy (Interview, June 6, 2012).
Together, these seven grassroots associations form CDIS. In 2009, the author met with Handicap International's local Coordinator for Social Participation, who had been instrumental in organizing CDIS. She explained that the coalition was started because the head office in Europe had determined that "people [with disabilities] by themselves cannot and will not make demands, so they need an organization to make demands for them" (Interview Notes, August 16, 2009). CDIS is part of HI's larger worldwide Making It Work campaign to engage DPOs in disability rights advocacy.
While CDIS initiates its own projects, such as the annual National Disability Day March and several other rights education programs, its primary function seems to be to organize local persons with disabilities together to receive workshops and trainings on disability rights that are carried out by international or national (i.e. Managua-based) actors. An example of just one of the many conferences and workshops observed was one held in October, 2011. Leaders of all of CDIS' member organizations were invited to attend a week-long organizational development course that was being implemented by a national, Managua-based, disability network and paid for by an international NGO. The course highlighted the connection between developing a political consciousness and gaining access to public resources. The first module focused on developing a disability identity, complete with a section in the course book on social devalorization and tips for improving self-esteem (CONFIN, 2011). After establishing that persons with disabilities are discriminated against, the trainers explained that a person must recognize their own importance and the importance of their group. According to the lecture, this recognition should result in assertive communication and political advocacy, which was defined as "organized by groups and directed at institutions [government/public agencies]." The last slide of their PowerPoint declared that "Everyone needs to be together and united to participate and fight (luchar)" (Field Notes, October 3, 2011).
Throughout the period of field word in Segovia, CDIS did indeed meet with government officials to discuss ways they could work together and organized meetings and public awareness events. The coalition even managed to get Segovia's City Hall to establish an Office of Disability Affairs to monitor rights violations. All of these activities were funded through a grant from the Disability Rights Fund, which provided small grants to CDIS from 2009-2011. DRF's webpage states that "DRF grants strengthen local stakeholders who can hold governments accountable for fulfilling the rights of persons with disabilities. By supporting civil society efforts at country level to ratify, implement, and monitor the [UN] CRPD, DRF seeks to make a more direct impact on improving the conditions of PWDs [persons with disabilities]." DRF makes it explicit that "no funds shall be used for service provision" on their website. But many of these advocacy activities, with a few notable exceptions discussed below, remained tangential to the core of the disability associations' work, which remained on service provision for its members. The reason being is that members of the coalition saw advocacy as a limited solution, given their belief that the local government lacked sufficient funds to fulfill the rights promised. For example, the Chair of CDIS, who was also the President of the local Association of the Blind, called the rights advocacy model "illogical," going on to explain that:
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…
Luis, the Chair of CDIS, then went on to explain that the expectations of international NGOs are unrealistic and based on their experiences in wealthy countries and not poor ones such as Nicaragua.
I believe that 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 can rapidly carry out the law. But I believe that 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 here. Right, it is impossible, yes? (Interview, March 21, 2012)
Luis was at least right about insufficient funding. Segovia's local government received 139 million cordobas ($5.7 million dollars) in 2012 from Nicaragua's Central Government. This works out to less than $50 of public spending per citizen. The budget includes investments, such as paving roads, putting in sewers and running water, and dredging the river, which burst its banks and flooded several city blocks during the 2011 rainy season. The budget also covered the city's administrative expenses (i.e. municipal employee salaries and facilities). Special initiatives funding in public health, education, sports, culture, and vulnerable populations (i.e. the elderly, single mothers, street children, and, of course, persons with disabilities) could only come after operational and infrastructure objectives were met.
This paltry amount of public spending, however, was not a sign of government disinterest in social programs, but a reflection of Nicaragua's economy. Nicaragua, next to Haiti, is the poorest country in the Western Hemisphere. According to the World Bank, 42% of Nicaraguans live under the poverty line, with nearly 80% of the population living on less than $2.00 a day (UNDP 2009). There have been, however, important improvements in Nicaragua since the end of the Somoza dictatorship in 1979. At that time, there was virtually no public education, but today Nicaragua boasts a primary enrollment rate 20% higher than the average for countries with a similar level of economic development. The World Bank, however, accredits Nicaragua's "pioneering strategies to fight poverty" to projects that "leverage local initiatives that stretch limited resources further and deliver sustainable results" (World Bank, 2013).
As such, Luis felt that the coalition had been incredibly successful getting as much as they had, but he was also realistic given the amount of public money available. Luis made it clear that he believed that it was the place of civil society to continue offering services. The Association of the Blind, despite admonitions from international organizations that it was the government, and not the association's, responsibility to provide services, remained steadfast in its commitment to its Braille school and employment service. Dozens of young people continued to come to the Association of the Blind's office in Segovia to learn to read Braille and how to use a walking cane and access public transportation. But these services were also used as an entry point for engaging government. For example, the Association coordinated with the Ministry of Education and Ministry of Labor to place graduates into regular schools once they had learned Braille or into factories, which were supposed to be held accountable to non-discrimination labor laws. Luis stated that neither ministry had the manpower to provide the education or employment service on their own, an issue he saw as indicative of a lack of resources rather than a lack of political will. The coordination between civil society and government was therefore the sort of halfway that the Mayor had outlined years before when he discussed the two as "brothers" in fulfilling rights.
Los Pipitos, which operated a youth center providing social and employment skills to young persons with disabilities, the majority of whom had Down syndrome, faced intense pressure from outsiders to close its services in lieu of advocacy during 2011-2012. First, a German NGO conducted a series of workshops where parents and the youth were told that the workshops were "segregated," and therefore violations of disability rights. Secondly, the national office, attempting to bring local chapters into line with its own reformulation as a human rights, rather than service, organization, briefly managed to close down the center and replace the Executive Director with a new one who had been a professional organizer for a women's rights NGO in Managua. The parents and youth rebelled, forcing the new director out and the youth center back open. Again, the reasoning being that parents felt that the public schools were inadequately funded and because they valued Los Pipitos as an organization centered on solidarity. The Vice President of the Board framed the reopening of the youth center in terms of Nicaraguan solidarity and the mobilization of new resources. She explained that despite what society says, "I always say it is a blessing to have a child with a disability, and we have that child but we do not have the resources, therefore we respond with solidarity" (Interview, August 12, 2012).
During this same period, one organization remained steadfast to its commitment to advocacy only. ADIFIM, which had originally been formed by a Danish organization and founded, in the words of its local president "to learn the law" and advocate for its implementation, saw a dramatic slide downward in its relevancy to its members. At the beginning of participant observation with ADIFIM in 2009, it had 97 members. By the time data collection ended in 2012, it was unable to muster more than 15 for its monthly meetings and had seen its official roles diminish to less than 35. The reason being was membership frustration with the rights model. Typical meetings centered on the President reading passages from the national law or UNCRPD, often ignoring members who were more interested in getting concrete assistance, reminding them that ADIFIM was there to promote rights, not "do therapy." ODIFOM, the women with disabilities organization, followed a similar trajectory, suspending meetings in the beginning of 2012 because of lack of attendance.
Both the government and general populous expect Nicaraguan civil society organizations to provide services. While advocacy can be accommodated, it is more successful when it takes the form of coordination with the government, rather than rights awareness and legislative advocacy. The reason seems to be a political culture and economy that values civil society for its capacity to mobilize scarce resources, rather than simply make demands.
Uruguay: Collective action and the welfare state
The relationship between civil society and the state is very different in Uruguay in comparison to Nicaragua. The countries are not only separated by thousands of miles, but also centuries of development. While Nicaragua functioned as a sort of Central American outpost that received far less investment from the Spanish Empire than surrounding territories, Uruguay's temperate climate, strategic position between Argentina and Brazil, and naturally protected port, put it on a path to become one of the first Latin American nations to develop into a modern state. Today, less than 8.4% of the population lives under the poverty line, just one fifth of the number of Nicaraguans who do, and the average level of income for Uruguayans puts them at a higher level than many other countries, such as Argentina, Russia, and Brazil, whereas Nicaragua's nominal GDP per capita falls behind low-income countries such as Laos, Zambia, and Yemen (UN-STATS, 2012).
Uruguay's socioeconomic development is due to the region being a vital trading and military post. By the turn of the 20th century, the area around the Río de la Plata, where Montevido, the capital, is located, was already a modern metropolis. As a result, droves of Europeans arrived and a capitalist economy was established in city, which then spread economic development into the interior (Draibe & Riesco, 2007). Thus, early on, Uruguay began the process of demographic transition, modernization, and social development (Barrientos, 2004; Filgueira & Lombardi, 1995) that put the social and political institutions in place for Western-style modernization.
The development of Uruguay's welfare state originated during 1904 to 1916 when the Colorado Party implemented social welfare models copied from Europe (Segura-Ubiergo, 2007). Much of the region was state led during this period, yet Uruguay also had one of the region's strongest private sectors (Draibe & Riesco, 2007). The pension plans in Uruguay and its neighbor, Argentina, were the best on the continent, based on union-administered funds, which covered most of the employed citizens of both nations (Draibe & Riesco, 2007). During the developmental stage of the 1960s until the 1980s, Uruguay (and Argentina and Chile), contrary to most nations in the region, boasted excellent educational and literacy attainment levels from a historical emphasis on education brought by immigrants in the early twentieth century (Abel & Lewis, 2002).
Uruguay, like Nicaragua, also suffered under a brutal dictatorship, the Pacheco regime (1973-1985). The transition to democracy, however, did not result in civil war or international sanctions as Nicaragua's Revolution did. After a brief period of increased inequality following neo-liberal reforms in the 1980s, civil society reassembled in Uruguay, preventing the government from privatizing, helping to make it one of the few Latin American nations to experience an increase in equality during the 1990s (Koorzeniewicz & Smith, 2000) and by the mid-2000s Uruguay spent 12 times more in public social spending than its Latin American peers, with a full 16.9 percent of the national GDP devoted to social welfare and education programs (Segura-Ubiergo, 2007). Uruguay is also significant in the strength of its unions, which demonstrate the highest level of left-labor power in the region (Segura-Uberigo, 2007). Public pressure has not only kept public companies public, but also forced improvements in service provision (Stein, Mariano, Echebarría, Lora, & Payne, 2006). Direct democracy in Uruguay allows referendum and plebiscite by popular initiative to block laws related to public services, originally and still promoted by public company labor unions. Hence many reforms passed by Congress get repealed by referendum because citizen preference lies with public services due to historical reasons (Stein et al., 2006). As such, civil society in Uruguay is focused on advocating for the implementation and protection of various rights, often to ensure a better redistribution of public goods.
It is within the context of this highly developed welfare state that disability rights groups began organizing early on. Efforts to create disability-focused legislation began in 1985 when disability groups in Uruguay mobilized to push for their rights. As a result, four years later Law 16.095 Personas Discapacitadas (Disabled Persons) passed (Ley N° 16.095, 1989). Arguably the most essential aspect of Law 16.095 is that all public businesses must employ persons with disabilities, making up at least four percent of all employees. It is not surprising then, given this history, that Uruguay was an early signatory of the UNCRPD, which it signed on April 3, 2007 and then ratified on February 11, 2009. UNCRPD-advocacy trainings have since taken place in Uruguay. For example, the seminar titled "New challenges introduced by the Convention, for the disabled persons' organizations" took place in Montevideo in April 2009 and was coordinated by RIADIS (Red de Organizaciones No Gubernamentales de Personas con Discapacidad y sus Familias, Latin American Network of Non-Governmental Organizations of Persons with Disabilities and their Families) and the Uruguayan National Blind Union (UNCU) (Bustamante, 2009).
Generally, Uruguay today provides good disability-focused legislation. Uruguay contains disability-related laws in the areas of human rights, education, and labor, as well as decrees in the creation of disability organizations and monetary support (Dudzik et al., 2007). Law 18.308, passed in 2008, is designed to provide physical access to all Uruguayans in public settings and information access in public sectors. Especially notable is that the law guarantees this access to persons with disabilities (Ley N° 18.308, 2008, Título II, Artículo 6°, e).
The government also provides some financial assistance to disability groups. Since 1990 the Comisión Nacional Honoraria del Discapacitado, a national coalition of DPOs and NGOs, has received state funds for disability issues. Twenty disability-focused associations are currently functioning in Montevideo with an additional 28 groups in the interior (Martínez, 2009). These organizations are chiefly funded by government contributions for rehabilitation and social services and to a lesser degree by national and foreign foundations. The government provides general disability funds to the national cross-disability group, Plenario Nacional de Organizaciones de Discapacitados (National Plenary of Disability Organizations, PLENADI). In turn PLENADI divides the monies among different members as deemed appropriate.
In sum, Uruguay has a well-financed welfare state, history of civil society, and consequently good legislation that helps bring it in alignment with the UNCRPD. The author, however, found that problems exist within Uruguay: the distribution of public resources and protection of rights are uneven.
PLENADI's division of disability funds is uneven among disability groups and there is often a lack of coordination between disability organizations that leads to the exclusion of the Deaf and Blind communities (Government Interviews, 2008; IDRM, 2004). The relative strength of certain disability groups over others has also been institutionalized into law. Although progressive at its inception, Law 16.095 contains gaps by having its primary focus on physical access to the neglect of other disability groups' needs As a result, certain disability groups have decided to advocate on their own. Moreover, PLENADI is active in RIADIS, the regional network for disability organizations, consequently also leaving out the Uruguayan Deaf community perspective at the regional level (Bustamante, 2009; Member Interviews, 2009).
The Deaf community in Uruguay is particularly strong in its determination to advocate for rights when left out of the larger disability movement. Because access to communication in Uruguayan Sign Language (Lengua de Señas Uruguaya, LSU) was not included in Law 16.095, the Deaf community pushed for its own law in 2001, Law 17.378. This law builds upon a century of deaf-related law and policy and is the result of an equally long history of Deaf community advocacy efforts. Deaf-related legislation was first enforced in the early 1900s as a result of collective action.
The most significant deaf-focused achievement is the groundbreaking Deaf community Law 17.378 that was unanimously approved by the Uruguayan Parliament on May 16, 2001 (Ley N° 17.378, 2001). Law 17.378, officially titled "Reconocese a Todos Los Efectos a La Lengua de Señas Uruguaya como La Lengua Natural de Las Personas Sordas y de Sus Comunidades en Todo El Territorio de la República" (For All Intents and Purposes Recognizing Uruguayan Sign Language as the Natural Language of Deaf Persons and Their Communities in all the Territories of the Republic). Law 17.378 was primarily established to eliminate communication barriers encountered by Deaf and Hard of Hearing persons in Uruguay ("La lengua," 2001). In addition, the law officially recognizes LSU as an official language and requires actions in favor of "normalizing" the life of Deaf and Hard of Hearing persons; and at the time, the seventh law of its kind to be passed in the world (Fassanello, 2006). Through this law, LSU is the only language in Uruguay recognized by law through legal mandate (Administración Nacional De Educación Pública & Consejo Directivo Central, 2008, p. 37).
Achievements attributed to Law 17.378 include increased interpreter provision in public settings, including at secondary and post-secondary schools and at public employment competitions, which has increased employment opportunities and general access into majority society for Deaf Uruguayans. The law, also, has provided a platform from which collective identity and group empowerment have emerged within the Deaf community. This law elevated the Uruguayan Deaf community's status in the region and world as reflected in this Deaf leader's quote that "Uruguay is not only one of the first nations to become a member of the WFD, but now too is a pioneer in approving sign language." ("La lengua," 2001, p. 4).
The Uruguay case is not typical in the region since other Deaf communities in Latin America tend to be more integrated with local disability organizations. This is illustrated within RIADIS a network made up of disability organizations from 19 countries in Latin America and the Caribbean. No Uruguayan Deaf association is affiliated with RIADIS, but Deaf organizations from Chile (Corporación Ciudadanía Real de Sordos de Chile), Colombia (Federación Nacional de Sordos de Colombia), Cuba (Asociación Nacional de Sordos de Cuba), Ecuador (Federación Nacional de Sordos del Ecuador), and Venezuela (Federación Venezolana de Sordos) are members.
Exclusion of the Uruguayan Deaf community from the broader national disability movement has not been remedied even since the signing and ratification of the UNCRPD and subsequent trainings. This was highlighted at the RIADIS-sponsored conference in Montevideo in April 2009 where Deaf participants were largely excluded from group discussions due to an overall lack of sensitivity to the delay in communication when using sign language interpreters. This disconnect thwarted subsequent cross-disability organizational efforts (Bustamante, 2009; Member Interviews, 2009).
As illustrated above, the Uruguayan political system and structure provide a broad range of disability and deaf programs, policies, and laws. Uncommon in most nations, the state often partially or fully funds many of these initiatives. Yet at the same time disability and deaf-related legislation is not enforced consistently, consequently pushing disability and Deaf groups to advocate and organize at the grassroots level. It is through this process that the Deaf community actively and successfully mobilizes and separates itself from other disability groups. The Deaf community effectively organizes to make change at the local level, but also strategically creates alliances with various state entities.
Although the Deaf Uruguayan community does not regularly join forces with local disability groups, it does create partnerships with non-disabled hearing allies, outside the community, considered important for effective Deaf community advocacy (Stanley, 2006). Allies outside the community are almost without exception connected to the state. From this case study it appears that coordination with the state is a chief attribute in the development of the Deaf community from which it gains access to valuable resources and information. Below a community leader describes the role and importance of hearing allies for the Deaf community in its fight to gain human rights.
The Deaf community has developed differently. We have been constantly fighting to have equal rights and now we are becoming empowered. ASUR has been very important in fighting for Deaf rights. At ASUR proposals are written and revised and taken to the government where hearing allies work with the Deaf for equality. We have laws protecting our rights, but we are still missing a lot because the law is not regularly enforced. It was much worse for the Deaf community in the past and little by little we are getting somewhere. But to do this we have to work for our rights every day (Alejandra).
Perhaps the existence of successful Deaf and hearing partnerships outside the community is connected to the effective and frequent interaction between Deaf and hearing allies within the community. The cohesive teamwork from within the community leads to the creation of proposals and projects that leaders bring to the state. This parallels Rose and Kiger (1995) who argue that partnerships between Deaf and hearing groups tend to be more effective when common goals are pursued, persons of similar status work together, and interactions with non-group members are frequent and varied to lessen stereotypes. An excellent example of Deaf community and state collaboration is the 2007 agreement with Bienestar Universitario, the university scholarship program that funds interpreters at the public National University. The university pays for interpreter salaries and with this benefit CINDE is expected to provide free LSU classes for university students and professors (Member Interviews, Cecilia, 2008). This agreement not only provides invaluable access in sign language to higher education, but also has further opened networks for the community allowing for more Deaf community achievements.
Another possible factor in the creation of state alliances could stem from Uruguay's long tradition of social welfare policies and overall accessible government system that provide an avenue for advocacy, dialogue, and discussion about Deaf rights, greatly assisting the development of the community. The fluidity of and close connection to the government allow tangible goals to be obtained. Even the Deaf community agrees that protests, although a visual expression, are not as effective as directly working with the government to obtain goals (Deaf Class, 2008). These collaborations lead to more networks within the government, as this leader describes.
As a group from CINDE we went to the Intendencia (City Hall) and explained why Deaf people need separate employment exams with interpreters. We discovered this situation because a Deaf person was scheduled to take an employment exam and found out that no interpreter was available and asked CINDE for our assistance. So we called the Intendencia, scheduled an appointment and went to discuss the issue. Now other organizations, such as Banco República, have summoned us to discuss how to resolve the same issue (María Laura).
The above statement reflects the accessible policy that any Uruguayan can easily meet with government officials. Moreover individuals can repeatedly meet directly with politicians, a benefit the Deaf community uses to continually fight for goals. An individual only needs to schedule an appointment and meet a government official as soon as the next day or at the latest in a month (Leader Interviews, Teresa, 2009). Access to political figures is considered a democratic right rather than a privilege.
Collaboration with the government especially increased in 2001 after the recognition of LSU as an official national language in Law 17.378. The community uses this law as a platform to advocate for their rights. Although helpful, the community still needs to collectively push to ensure that legislation is enforced (Leader Interviews, Felipe, 2008). Despite impressive collaboration between the Deaf community and the government, repeated advocacy efforts are often necessary to create change. It can be an exhausting process as indicated below.
We go to Ministry of Education and Culture and speak to the political figures about our issues. We go to the Ministry of Health to advocate that they provide interpreters in healthcare centers. They listen, but they don't do anything. We have to keep fighting on and on and I am tired. What I really want is to inform society about the Deaf community and about LSU to work on changing the consciousness of people, which would really make change (Ana, Leader).
When the government approves deaf-focused projects, almost invariably the government provides the funding, or at least a portion of it. This is a unique benefit in Uruguay, and other than in Venezuela and Brazil, no other South American nation has such strong state-based financial assistance (Allen, 2008). State funding benefits the Deaf community in its development, but funding also comes from private sources within the country, such as income-generating activities ASUR has initiated by renting out their facilities, which include an impressive indoor soccer field and clubroom (Leader Interviews, Juan, 2009).
In conclusion, Deaf community collaboration with state actors arise from effective advocacy and outreach strategies from within the Deaf community, a fluid and accessible governmental system, Uruguay's small geographic size and low population, and also arguably from recent governmental policies and the focus on implementing broad social policies.
Conclusion and Discussion
Nicaragua and Uruguay both signed the UNCRPD and both have active civil society organizations representing persons with disabilities. But only one fully fits the profile of the type of "advocacy" organization implicit within the UNCRPD and explicit in trainings and funding being provided by international disability NGOs that believe that persons with disabilities are only effective when they are holding "governments accountable for fulfilling the rights of persons with disabilities" (HI, 2013). The "new type of NGO" that the authors of the UNCRPD called for does not seem entirely possible without redefining state-civil society relations and ensuring that governments have the funds necessary to redistribute in the first place. In Nicaragua, persons with disabilities themselves recognize that their advocacy and the rights they are able to have written into law remain "desires" against a reality of a weak government. But they also take great pride in their ability to support their own members through a culture of solidarity.
Uruguay's civil society-state relations not only fit international expectations, but go beyond it. The success of the disability movement, however, is not reflective of their advocacy alone, but of a century of commitment to public services. When a law is passed, the state has the resources to provide. That does not mean, however, that Uruguay is without problems. Instead, it shows that civil society itself can be unfair. The Deaf community perceives itself as having been left out of the disability rights coalition. Thus, the community has gone alone in many projects to advocate for its own benefits and protections directly from the state. When the community does collaborate with other civil society actors, it is done judiciously, calling into question the faith groups like DRF put into "cross-disability" coalitions (2013). It may be necessary to ensure that particular groups of persons with disabilities, such as deaf and hard of hearing persons, are also capable of their own advocacy.
The governing hypothesis of this paper has been that not all DPOs fit expectations or prioritize the objectives of monitoring human rights and advocating for more rights legislation as outlined in the UNCRPD. Rights advocacy is important, but civil societies develop within particular cultures and in response to a variety of socioeconomic conditions. One size may not fit all. To be sure, it is important to provide resources to persons with disabilities and their representative organizations to advocate for their members. But, a dialogue should be opened up in order to understand how civil society can be supported in a variety of contexts and what measures can be taken for them to meet the needs of their members. In Uruguay, a modern, Western-style welfare state and long history of advocacy-oriented civil society organizations has enabled the disability community to fit, and in many cases, exemplify the profile of disability rights advocacy currently being disseminated around the world. The Deaf community, however, has also shown the importance of particular groups of persons with disabilities remaining attentive to their own rights and advocating on their own when necessary. In Nicaragua, a weak government and a tradition of popular organizations mobilizing in order to solve social problems has led to a variety of outcomes, including organizations that question the extent to which their rights can be fulfilled by the state. Tailor-made interventions might be more useful for assisting DPOs in achieving those things that their members prioritize.
Strengthening Public Participation At the United Nations for Sustainable Development, a 2013 UN report cites a number of problems local civil society organizations and social movements have encountered when either directly interfacing with the United Nations or when working with international NGOs. For many groups, they feel that the agenda for them has already been set at the international level, leading to few expectations for them other than to get in line. One recommendation in the report states that "Regional and national initiatives should be leading the content of what is happening at the international level, rather than the 'global level' trickling down" (p. 19). The very definition of what a civil society should be doing is being spread from the top-down. Perhaps, one thing that can trickle up from Nicaragua and Uruguay is flexibility for DPOs to define their own needs and the assistance they receive. If learning to not only monitor government implementation of rights, but the distribution of benefits through cross-disability coalitions is something important to the Deaf community in Uruguay, perhaps international NGOs could help them achieve that. If actively contributing to the provision of social services is a priority for Nicaraguan DPOs, then perhaps the international community can help them do so sustainably. If DPOs are going to define their rights and the implementation of them, they must be able to define themselves as civil society organizations first.
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