The concept of citizenship was instrumental to the formation of the disability movement in the West by recasting disability as the denial of equal citizenship of persons with impairments. The disability movement expanded notions of citizenship by not only focusing on nondiscrimination and the protection of civil and political rights, but also the necessity of self-directed, but state-provided, social rights as prerequisite for substantive equality. With the passage of the Convention on the Rights of Persons with Disabilities, Western approaches to disability citizenship as state protected rights have globalized. Critical disability scholars are increasingly arguing that Western theories of disability, citizenship, and rights are inappropriate in local contexts in the Global South where weak welfare states are the reality. In such cases, self-help and mutual support are more determinative in the lives of disabled persons than formal rights. I extend these arguments by analyzing three grassroots disability associations in Nicaragua that assist their members achieve citizenship through self-help, service and solidaridad with the community.
Disability and citizenship are inextricably linked. The concept of citizenship has provided a framework for understanding disability in contexts as diverse as Turkey (Bezmez and Yardimici 2010) and Australia (Meekosha and Dowse 1997) and across impairment groups as different as deaf persons (Emery 2009) and persons with intellectual disabilities (Carey 2010). The majority of these studies argue that persons with disabilities have been denied their full rights as citizens by ableist states. Historically, the disability movement and disability studies scholarship has exposed the way modern social welfare states rob persons with disabilities of their autonomy and render them dependent through discriminatory law and policy. In return, disabled persons have mobilized to demand recognition as citizens with equal rights. Within these movements, persons with disabilities are represented by organizations that were formed for the purposes of self-help or legal advocacy. Mainstream sociolegal and disability studies literature, however, has largely ignored the former—self-help—to maintain a narrow analytic focus on the ways persons with disabilities become citizens through the development of a rights consciousness, engagement in political protest, and legal mobilization (See: Engel and Munger 2003; Heyer 2015; Vanhala 2010).
These processes of persons with disabilities claiming citizenship first began in Western Europe and North America, where their organizations demanded new laws to protect them from discrimination and promote their civil, political, and social rights. By linking disablism to the denial of citizenship, persons with disabilities have used their rights claims to go far beyond assurances of formal citizenship in the law to claim substantive citizenship in their daily lives through the promotion of a broad spectrum of self-directed social rights (Hirschmann and Linker 2015; Prince 2004). This process of claiming citizenship has now globalized as dozens of UN agencies, foreign donors, and international NGOs promote the 2006 United Nations Convention on the Rights of Persons with Disabilities by building up the advocacy capacity of grassroots disabled persons organizations around the world. But citizenship for the 80% of persons with disabilities who live in the Global South is often achieved through doing more than simply making rights claims against the state. Instead, Southern voices are increasingly arguing that citizenship in under-resourced states is achieved through participating in a community of social support and mutual aid. It is interdependence, not liberal-individualist rights (Oldefield 1998), that makes people citizens. This view corresponds with alternative notions that argue that citizenship's "strength and capacity to survive depends largely upon the intensity of the bonds of reciprocity, trust and readiness to assume duties for the community" (Preuss 2003: 4). While seeing oneself as a rights bearer and forcing states to implement new laws is of vital importance for people to fully enjoy citizenship, working collectively and serving oneself and the larger community is also an important but largely ignored aspect of citizenship (Pocock 1998) that is practiced by millions of persons with disabilities today.
This article seeks to move beyond the Western-based conceptualization of disability as a denial of citizenship (Beckett 2005) by using recent critiques of the rights model of disability (Berghs 2017, Chataika 2016, Connell 2011, Cutajar and Adjoe 2016, Grech 2015a, Lawthom 2012) to analyze the ways in which grassroots disability associations in Nicaragua achieve citizenship for their members through practices of solidaridad ("solidarity"), that demonstrate "the responsibilities and contributions to civil society [made] by all people with disabilities" (Meekosha and Dowse 1997: 67). Understanding the way Nicaraguans with disabilities achieve citizenship through self-help, service, and participation in a culture of solidaridad shows the ways that citizenship, including substantive freedoms, can be advanced through people participating in collective practices that address material needs in low-resource environments. Furthermore, I argue that this active citizenship is no less political than legal mobilization for rights advocacy; fostering interdependence and shared development directly enlarges the polity by creating more inclusive communities.
Disability, citizenship, and the Western welfare state
From the beginning of the disability movement in the West, activists with disabilities have identified the denial of citizenship as their defining experience and, thus, the rallying cry for advocacy organizations to demand full recognition of their rights (Oliver 1996). Indeed, being disabled has allowed states to turn back immigrants, deny naturalization (Baynton 2005), confiscate of property (Groce et al. 2014), prevent from testifying in court (Hayes 1993), incarcerate in state hospitals (Bredberg 1999), and, at one time, the right to enter public spaces (i.e. "ugly laws;" Schweik 2009). In the West, state-based discrimination was personified by the modern social welfare state, through which rehabilitation professionals, charity workers, and other state-designated "experts" were empowered to decide what was "best" for persons with disabilities, and thus rob persons with disabilities the basic freedoms of choice, particularly over the education and social services individuals received. Thus, a major focus of emergent advocacy Disabled Persons Organization in North American and Western European was that persons with disabilities themselves be recognized by governments as primary advisers on disability policy and that individual disabled persons be primary decision-makers over the social welfare services they received (Groch 1994: 377).
These new DPOs were explicitly based on the view that persons with disabilities must be recognized as equal citizens (Prince 2004: 464) by analogizing the disability experience with the Civil Rights and women's movements (Scotch 2001) to argue that disability is the "last civil rights movement" (Driedger 1989) and demand laws that promoted equal rights, fair treatment, and equal opportunities (Heyer 2015: 331). In this way, the disability movement reflects the well-established liberal-individualist tradition of citizenship as equal status in rights (Oldefield 1998). It also advanced liberal T.H. Marshall's reimagining of liberal citizenship's ideal of equality by arguing that equality necessitated a broad range of social rights (education, employment, health care, etc.) to complement traditional civil and political rights (1964). These ideas merged in demands for both a demand for the expansion of social rights, and the demand that persons with disabilities themselves control those rights (i.e. "consumer-directed services;" See Benjamin 2001) in order to "participate fully [in society]" as citizens (Barnes, Oliver and Barton 2002: 259).
The demand for state-protected and state-provided rights, thus, is the core of disability citizenship research. To wit, a recent review of all peer-reviewed articles on citizenship and disability over the past thirty years identified the overwhelming majority are on rights advocacy, and of those, only 16% were countries outside of North America and Western Europe, and of those, the vast majority were on rights advocacy movements in developed, Western-based democracies such as Australia and Japan (Sepulchre 2017: 951). In fact, just 3% of the total, and none on the Global South discuss the contributions persons with disabilities make to society, including service-provision, self-help, and volunteerism (Sepulchre 2017: 952-953), which I argue is often of equal, if not more importance, to citizenship in many specific contexts in the Global South.
The globalization of citizenship rights
New laws and policies protecting and promoting citizenship rights for persons with disabilities have been spreading around the world at increasing speed since the rise of the disability movement in the West more than a half century ago, and the more recent adoption of the Convention on the Rights of Persons with Disabilities (CRPD) by the United Nations in 2006, which brought citizenship rights for persons with disabilities to the top of the agenda in much of the Global South. The CRPD explicitly frames persons with disabilities as "full and equal citizens" and a reversal of histories of "denying or diminishing citizenship and civic participation" (Kayess and French 2008: 5). The influence of the Western disability movement's focus on civil, political, and social rights as a means of attaining citizenship is clear throughout the CRPD. In fact, the CRPD's most "groundbreaking provisions" (Sabatello 2014; 24) require that States Parties "closely consult and actively involve persons with disabilities…through their representative organizations" in the development of legislation and policy and that "Civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process" of their rights.
What these articles and the Convention as a whole do is not only institutionalize the liberal-individualist citizenship model for persons with disabilities around the world, but make grassroots DPOs participants in the process by ensuring they are continuous rights claimants and rights monitors. To that end, many international NGOs and international development funds have been dedicated to supporting grassroots rights advocacy throughout the Global South with technical assistance to ensure they can fulfill this citizenship role. Yet, despite this emphasis on citizenship for persons with disabilities in the Global South, little is known, and of the research out there, the liberal-individualist model of citizenship is often uncritically applied and used for the purpose of seeing if another society "measures up" to the citizenship persons with disabilities enjoy in the West. Bezmez and Yardimci (2010), for example, analyze DPOs in Turkey to determine if the groups have the "capability to develop a rights-based stance" (603) or have "a long way to go" (613) and a similar study on the Ukraine critiques local organizations for being "plagued" by because they embrace "the basic idea of a socially shared responsibility toward fellow citizens" that frames disability as a community, rather than state, responsibility (Phillips 2010: 242).
This prototypical scholarship's focus on citizenship achieved through state-protected rights never asks the question of what citizenship means in local perspective or how persons with disabilities and their grassroots associations in the Global South attempt to achieve it. There is, however, a growing number of critical disability studies scholars that are beginning to question the applicability of Western definitions of disability and citizenship in the Global South (See: Meekosha, 2008; Connell, 2011; Cutajar and Adjoe, 2016; and Grech, 2015a). Chief among their concerns is that disability theory's emphasis on individualism ignores cultures that promote interdependence and Northern focus on rights ignores countries incapable of their implementation. Meekosha and Soldadtic (2011), for example, argue that Western notions of individualism are inappropriate for persons with disabilities living in communities where interdependency is the essence of kinship and community relations. To that end, Connors and Donnellan (1993) argue that in contexts where subsistence economies persist, persons with disabilities continue to enjoy full citizenship, evidenced by persons with severe intellectual disabilities raising their own livestock, getting married, and otherwise enjoying the full rights and responsibilities of citizenship within the Navajo Nation, despite often being nonverbal and unable to complete tasks of daily living (i.e. dressing). This same relative equality within household economies has also been observed among Massai with disabilities in Kenya (Talle 1995) and Tswana with disabilities in Botswana (Ingstad 1995). In this way, citizenship for persons with disabilities in the Global South is realized through strong social ties and close-knit communities where everyone is a contributor to the collective struggle for survival rather than being rights holders who make claims on a welfare state (Grech 2011).
The focus on citizenship rights protected by the state ignores other important realities. Meekosha (2008), for example, argues that Southern states have little power to address disability locally because more powerful Northern states are often the producers of impairment in the Global South, citing military interventions and global trade policies that force the masses into unsafe working conditions. Others point to World Bank and IMF Structural Adjustment Programmes that act as barriers to low-income nations developing modern welfare states, thus making the community even more vital (Grech 2011). Similar observations are made by others, including in in India (Ghai 2002) and southern Africa (Ingstadt and Whyte 1995), where community-based systems of mutual aid play a more instrumental role in promoting the active participation of persons with disabilities in their communities than any rights campaign or piece of legislation does (Grech 2011). For example, Evans and Atim (2011) points to peer support groups in Uganda as essential for disabled people, yet go unacknowledged by the disability rights movement that only focuses on lobbying government and influencing policies (82-83).
Other researchers have sought to replace Western disability models of liberal-individualist citizenship. Venezualan researchers Aramayo, Burton, and Kagan (2016), for example, argue the social model of disability comes from "the specific social reality of the western European post-war welfare settlement" and centers on "independence" through the administration of social rights (519), whereas in Venezuela, citizenship is found through "collectivism" and can lead to the inclusion of disabled persons in their communities without a large role for the state (527). Bergh (2017) similarly suggests a context-specific model of disability and citizenship in South Africa that is rooted in the Zulu concept of Ubuntu, a concept used by Mandela to define citizenship as "a holistic form of democratic inter-dependence" (4) and, thus a type of citizenship that goes beyond state-protected rights (7). Importantly, a Nicaraguan researcher compared applied different models of disability to Central American, and found that an more "ecological" model, focused on community-based rehabilitation, was more appropriate in context than a Western model based on the "concept of disability from the recognition of human rights, autonomy, integration, capacities and support" (Céspedes, 2005).
In the sections below, I build off of these critiques of citizenship and disability by arguing that in the context of Nicaragua, citizenship for persons with disabilities is achieved through solidaridad, a tradition of citizenship based on self-help and service to the community, and thus very different from the type of citizenship promoted by the CRPD and Western-based DPOs.
Data and methods
The analysis in this article is based on qualitative data gathered for a much larger study on grassroots disability associations in a mid-size city in Nicaragua that I have given the pseudonym Segovia. Segovia was chosen as a research site beginning in 2008 because it had seven active disabled persons organizations (DPOs) participating in a Departmental Commission for Advocacy and Awareness (CDIS) in Segovia. This disability rights coalition was organized and seed funded in 2008 through a series of workshops on rights advocacy conducted by Handicap International (now Humanity & Inclusion), an international NGO based in France, and the coalition subsequently received funding from the Disability Rights Fund, a Washington D.C. foundation with the mission of promoting the CRPD. Handicap International's work in Segovia was part of their global Making It Work initiative to "strengthen [DPO] advocacy to influence social change." This global program was for the express purpose of involving local DPOs in advocacy for the implementation of the CRPD and has conducted technical assistance in more than forty countries in Latin America, Africa, and Asia. The Disability Rights Fund's grant program similarly works in dozens of countries and provides small grants to be used to "strengthen local stakeholders [i.e. DPOs] to hold their governments accountable for fulfilling the rights of persons with disabilities." This ensured that all of the organizations were familiar with the Convention, social model of disability, and the rights advocacy approach to full citizenship for persons with disabilities.
For the purposes of this article, I base my analysis on three of the local DPOs in Segovia. Those are the Nicaraguan Association of the Blind, Los Pipitos, and the Organization of Disabled Revolutionaries because these three were the oldest DPOs and most closely associated with the civil society movement that occurred during the Sandinista Revolutionary Period, which dates from the Sandinista Revolution in 1979 through to elections in 1990 that removed the Sandinista Front from office as a result of the electoral success of the opposition. I will explain the significance of this time period in relation to the solidaridad approach to citizenship below. Associations not included include DPOs for persons with physical disabilities, hearing impairments, women, and disabled Contra soldiers.
The qualitative data was gathered through ethnographic field visits to Segovia in the summers of 2008-2010 and an 11-month research visit spanning 2011-2012. The data was gathered through participant observation, which included participating in the local associations' individual and coalition meetings; groups' daily activities, such as shadowing leaders in their daily rounds or volunteering in their offices; and participating in workshops conducted in Segovia by international NGOs promoting disability rights globally or regionally. This observational data was supplemented by 69 semi-structured interviews of the members and leaders of Segovia's DPOs. These interviews, which were recorded, were conducted and originally transcribed in Spanish. Quotes given below in English were translated by me. All interviewees quoted in the text below were given pseudonyms.
Citizenship in context: Solidaridad associations in Nicaragua
Nicaragua is a significant site for the study of citizenship and disability in the Global South because of its tradition of citizens forming solidaridad groups to address inequality and promote national development. This is particularly important, because it is indicative of a form of citizenship very different from Western liberal democracies reliance on the state. Instead, local Nicaraguan researchers have argued that grassroots associations are the major players in the construction of citizenship (Orozco & Wallace, 2005) and that solidaridad, people coming together in self-help and social support, is instrumental for the expansion of social protection to the poor and vulnerable in Nicaragua (Sojo, 2009). While this local, contextual model of citizenship in Nicaragua, as well as other models of citizenship, constitute a major area of research, there is a dearth of work on the role solidaridad plays in promoting citizenship for persons with disabilities, despite other analyses of specific groups of persons in Nicaragua, such as youth, women, indigenous persons, AfroCaribbeans, and others (Corona et al., 2006; Safa, 2008; Telléz, 2009).
The roots of solidaridad as the governing logic of citizenship in Nicaragua go back to the 1979 Sandinista Revolution. The values and practices of solidaridad, however, persist today and continue to define citizenship in contemporary Nicaragua. This includes the regular practice of Nicaraguans forming self-help and service groups to promote personal and national development. Many disabled persons organizations in Nicaragua continue to define themselves according to solidaridad, despite international pressure to become human rights advocacy groups. I argue that the persistence of solidaridad as a citizenship practice is based on its promotion of interdependence and its ability to carry out many of the social welfare functions of Nicaragua's relatively weak state.
Solidaridad represents an amalgam of Catholic liberation theology, Sandinista democratic socialism, and culture of interdependence. Liberation theology was inspired by 1960s ecumenical reforms that sought to reorient the Catholic Church to the "justice and love of Christ towards the poor" (Linden 2009) by institutionalizing a "preferential option for the poor" (Guiterrez 1973). This new theology of social justice was brought back to Nicaragua by priests such as the brothers Ernesto and Fernando Cardenal who began organizing poor peasants and workers into "base communities" that participated in self-help activities that promoted the common good. These base communities went on to not only dig wells, begin farming cooperatives, and build schools, but to also stand in opposition to "Tachito" Somoza, the American-backed dictator that used his presidency to gauge the poor and make himself the wealthiest man in Central America off of the back of the Western Hemisphere's second poorest populace (Lake 1989).
During the same time as Nicaragua's popular ("of the people") Church was growing, the Sandinista Front was also beginning to organize. The Sandinistas began as a group of radicalized university students that were inspired by Augusto Sandino, an early 20th Century leader of a peasant revolt that successfully drove out occupying U.S. Marines before Sandino was assassinated by the elder "Tacho" Samoza during peace negotiations. Sandinismo philosophy became a "blend of nationalism, pragmatic Marxism, and Catholic humanism" (Wright 1995: 169) that rejected Soviet or Cuban-style communism in favor of a multi-party, mixed economy with a heavy emphasis on civil society. To this end, they not only began to recruit campesinos in the countryside and workers in the city, but disaffected businessmen, opposition political parties on the right and left, and liberation theologians. Soon, this "broad-based, multiclass coalition" (Everingham 1996) was organized into Sandinista Defense Committees, which were neighborhood groups that supported the revolutionary cause.
By 1979, the movement had become so powerful that it not only brought the regime to its knees with a general strike, but its guerilla army had pushed Somoza's National Guard (his private army) into retreat, causing the dictatorship to flee. When the Sandinista Front took control of the government, however, it learned that they had inherited a country with just $3.5 million in government coffers and half a billion in foreign debt (Sagall 1995: 119). In the face of these odds they issued a new call to arms for Nicaragua's citizenry to carry out many traditional functions of the state. The Sandinista Defense Committees were transformed into Civil Defense Committees that did everything from collecting the trash to distributing food aid (Serra 1985), the Sandinista Youth began rebuilding schools and repairing roads, peasant farmers cooperatives distributed seeds (Kroeker 1996), small businesses established economic development funds, and so forth. All of these voluntary initiatives took on the identity of solidaridad organizations.
This "democratic socialism" (Brentlinger 1995; Ruchwarger 1987) solidified citizenship as meaning working collectively to rebuild the country and achieve "economic survival" (Vanden & Prevost 1993: 66) by participating in organizaciones de masas or "mass" or popular organizations (Anderson & Dodd 2005; Babb 2001). By the mid-1980s, more than half the population belonged to at least one mass organization (Ruchwarger 1987), with Community Defense Councils alone including one sixth of the population (Serra 1991) and hundreds of thousands more belonging to Base Communities, business cooperatives, trade unions, youth groups, women's groups, and even, disabled persons organizations. Through these solidaridad groups, previously unattainable social rights became a reality. For example, when the 1979 census revealed a national illiteracy rate of 50.3% (Hanemann 2005), Fr. Fernando Cardenal, now the government's Minister of Education, initiated the Cruzada Nacional de Alfabetizacion (National Literacy Crusade), which mobilized 95,000 volunteers that went out into rural areas to teach people to read. Within five months the illiteracy rate dropped 37% and the next year Nicaragua was awarded the UNESCO literacy award (Arnove 1981). Dozens of other vaccination, clean water, and so forth crusades soon followed.
These practices of civic participation have become interwoven in Nicaraguan identity and understanding of citizenship (Brentlinger 1995). Self-help, service, and mutual aid associations continue to this day. And while solidaridad is still associated with the Sandinista Front's campaign slogans such as Unidad por el Bien Común (United for the Common Good) or "con todo y por el bien de todos!" (with everyone for the good of all!), it can even motivate organizations that have rejected the Sandinista political party. For example, Mendez cites a working women's movement that rejected the Sandinista Front for being male-dominated and patriarchal, yet still be acknowledged by members who argue that "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?" (Mendez 2005: 25), and thus found a mass organization to provide day care and other services to women working in the Free Trade Zone.
In these ways, Nicaragua has not only created its own version of "active citizenship" that promotes self-help and service to the community, but it has constructed active citizenship so that it is accessible even to the most marginal. Shier, for example, argues that Nicaraguan solidaridad organizations are able to transform "invited spaces", which are public spheres defined by elites, into "'popular spaces' owned and controlled by the citizens themselves" (2008: 2) and Anderson and Dodd (2009) similarly argue that the culture of solidaridad was not only fundamental to "citizen engagement" in Nicaragua, but also set a standard that allowed Nicaragua to become an inclusive, multiparty state following the end of the Sandinista Revolutionary Period because of its dedication to the common good. Thus, solidaridad as a practice of citizenship is not an alternative, but a complement to liberal citizenship's focus on equal status and rights, but does so by promoting practices of self-help and mutual aid.
I will now analyze the citizenship practice of three disability associations in Segovia in light of the culture of solidaridad and their relatively recent introduction to the disability rights model of citizenship.
The Nicaraguan Association of the Blind
The Asociación Nicaraguense de no videntes de Segovia, or the Nicaraguan Association of the blind (literally "without sight") of Segovia, was founded by Luis in 1995 as a solidaridad organization with the mission "To struggle [luchamos] for the integration of those without sight into society." To its members, this disabled persons organization, which provided them with a forum to help themselves and demonstrate their solidaridad with the larger community, was part and parcel of their citizenship practice. It not only provided them with skills, but allowed them to contribute to Segovia's municipal development.
The Nicaraguan Association of the Blind (NAB) began in the mid-1990s shortly after Luis returned home from Cuba, where he had been sent for rehabilitation after he was wounded in the Contra war. Like many youth of his time, Luis had volunteered and been wounded serving in the Sandinista army and then sent to Cuba for rehabilitation services that Nicaragua could not provide. While there he not only learned to read Braille and use a walking stick, but he was allowed to attend university where he studied law. During interviews, Luis explicitly connected his life story and the mission of the NAB to the way he learned citizenship from serving in the Revolution and studying in Cuba, stating that it was through these experiences that he learned "the philosophy of rights and obligations of a citizen. From there [rehabilitation in Cuba] was born my commitment to other people with disabilities." He also described his dedication in relation to solidaridad.
I participated in the Sandinista Youth 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.
Determined to be a good citizen, Luis began the NAB when he returned to Segovia and learned that he was one of only a few blind persons who was educated and could read Braille. He and a small group of others with visual impairments came together to begin a self-help association dedicated to education. It began by blind persons visiting other blind persons and providing one-on-one tutoring in their homes. Eventually, the group grew from 16 in 1995 to over 200 when I was introduced to them fifteen years later. By that time it was no longer feasible to educate members in their homes, so that association had secured a small three room office free of charge from the municipal government. There, the NAB's "micro-school" was established with a dormitory for four persons, rudimentary classroom, and office. I visited often during my time in Segovia, inevitably meeting volunteers who sat with students as they ran their fingers over the pages of a book or manipulating their hands as they taught them to use a peg slate and stylus for writing in Braille. I also regularly met students with volunteers learning how to safely walk on the streets, use public buses, and shop in stores using a white walking cane. Both the volunteer tutor and the students were members of NAB.
Whereas the citizenship and disability discourse in the West heavily focuses on differentiating social services from social rights on an access of the state either creating dependencies or empowering persons with disabilities to control their own services (and thus attain citizenship), the NAB service model stands in stark contrast. It was certainly not a traditional social right in terms of a protected entitlement administered by the state, but it was also not a charity meted out by donors. Instead, it was a self-help initiative controlled and sustained by persons with disabilities themselves.
During a portion of my field work, Handicap International had initiated an advocacy campaign focused on Article 24 on Education in the Convention of the Rights of Persons with Disabilities. This lengthy article explicitly obligates that "States Parties shall enable persons with disabilities to learn life and social development skills to facilitate their full and equal participation in education and as members of the community," including "Facilitating the learning of Braille, alternative script, augmentative and alternative modes, means and formats of communication and orientation and mobility skills, and facilitating peer support and mentoring." While deeply involved in education, NAB was not a significant participant in Handicap International's local inclusive education campaign in Segovia. I asked Luis about this campaign and others initiated by international NGOs. His response focused on state capacity, reflecting what critical disability studies scholars have observed across the Global South in terms of Southern states lacking the resources to develop modern welfare states for the purposes of promoting citizenship through social rights. Luis explained:
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?
Luis' analysis of the capacity of the state, exemplified by the local municipal government, places rights advocacy in Southern perspective. Whereas it was instrumental for persons with disabilities achieving full citizenship in the West, such legally protected "benefits" or social rights in a place like Nicaragua only symbolize a "desire" and thus make no contribution to citizenship in everyday life.
This skepticism regarding the law and state capacity, however, did not mean that the NAB isolated itself from the state. Instead, it sought them out as a partner to be in solidaridad with in their mutual obligation to contribute towards the development of the nation state and thus the self-development of persons with visual impairments. To this end, the micro-school only represented one stop in NAB's "struggle for the integration of those without sight into society." The next stop was to support the state in educating their members in their home communities.
Once students had graduated from the micro-school, Julia, who was a sighted education coordinator hired by the NAB and funded by an income-generating bicycle repair project (discussed below), placed them in their neighborhood or village primary school. She did not do this through rights advocacy, but by supporting teachers. I visited schools to observe these placements. In one school, for example, I observed Carla, a fourteen year old girl sitting in a classroom taking notes with her Braille slate. She participated in the same way as other students with the added provision that the teacher was very vocal about describing things throughout the lesson, such as directing her voice towards Carla to give the number of hands raised after a question or describing anything she wrote or drew on the chalkboard in great detail so that Carla would not miss anything.
After the session was over, I spoke with the teacher who explained that her school had always accepted students with visual impairments, "but we gave classes to these children without any training." She then described how Julia from the NAB trained her so that she could do her job better. "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." In other schools, the story was similar where teachers were quick to say they had never "excluded" students with disabilities, but it was not Julia that they learned how to "include." The NAB acted as a resource that made up for their deficit. In fact, the Segovia office of the Ministry of Education regularly partnered with NAB and Los Pipitos (discussed below) to provide workshops to teachers working in the region.
The NAB had a similar strategy in terms of employment. This "place and train" project was a natural outgrowth from education. Once members had completed school, they wanted to work. Thus Julia, who also worked as NAB's job developer, visited employers on a regular basis with a motto that reflected solidaridad. Her approach was to tell potential employers: "Give me [a person with a disability] an opportunity to work and you have given me a part in the development of your business." To that end, she showed managers, often in the tobacco processing and cigar rolling plants that circled the city, a person with visual impairments whom she had previously placed and ask managers to observe and see if her worker was any less skilled or efficient than a non-disabled one. She explained "When I talk to the boss, I only ask that they give me the opportunity to demonstrate that people who are blind can learn to work as well as any other worker." Rather than appeal to the law and rights, she appealed to equal opportunity would provide them with a worker providing equal work. When I asked her about the value of solidaridad, Julia responded that many of the Nicaraguan bosses understood providing work as a responsibility to give back to the community.
The NAB's employment project was a solidaridad project in another way. Because there were more jobs than persons with visual impairments in need, Julia had begun to also place persons with hearing and physical disabilities from other disability associations in Segovia. To this end, in 2011 the municipal government received a small donation from a sister city in Europe to set up employment services. The municipal government immediately reached out to NAB because they wanted to prioritize solidaridad groups with the money. This allowed them to convene forums where they invited local employers to the City Hall and provided a venue for Luis, Julia, and other disability organizations to talk about their ability to work. This resulted in employers coming directly to NAB requesting persons with disabilities for open positions.
The expansion of these activities, however, required more resources from the NAB to keep up. To this end, NAB's members had decided to prioritize building up the capacity of a small bicycle repair shop that provided the group a modest, but vital income. The shop, which was also in a space provided by the municipal government, had begun years before when a mission group had given them a donation of used bicycles. NAB's members and a group of local, sighted volunteers, began refurbishing and selling the bicycles, garnering them the skills necessary to begin offering repair services, where NAB members set chains, balanced wheels, and offered other basic repairs by feel, rather than sight. On the basis of their relationship with the Disability Rights Fund, which was funding rights advocacy in Segovia which NAB participated in, Luis decided to submit the proposal to them, only to be rejected out of hand. In frustration, Luis once exclaimed to me "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]"
In my analysis, however, DRF and other international NGOs logic was very clear. They understand citizenship as only attainable through state protected rights. Luis and other locals, held a different view, that citizenship was achieved through solidaridad. As such, the Nicaraguan Association of the Blind of Segovia was established as a self-help organization that not only created opportunities for its members, but was a resource to both the state and the larger community. It also achieved the West's objective of ensuring persons with disabilities controlled services rather than medical experts, charities, or civil servants, but it did so in a fundamentally different way. Rather than hold the state accountable for social rights as a prerequisite for full citizenship, NAB achieved citizenship by showing themselves to be contributors to the common good. Unfortunately, these practices were ignored by rights advocates based in the Global North.
Los Pipitos, known formally as the Association of Parents of Children with Disabilities, is a national organization in Nicaragua made up of dozens of independent parents' groups representing each city or village, including Segovia. Like the Nicaraguan Association of the Blind, it's history also has strong roots in the Revolutionary Period. It was, in fact, founded by a Sandinista war hero, Omar Cabezas, while he was serving in the Ministry of the Interior in the 1980s. During that time, he and his wife gave birth to twin daughters with Down syndrome. When they realized there were no resources for children with intellectual disabilities, they decided to initiate a mass organization to fill the need, resulting in Los Pipitos being born in 1987. Within a year, it included five hundred families. Los Pipitos' vision statement is based on solidaridad: "We are a voluntary partner 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." Their official history also references solidaridad: "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).
The Los Pipitos chapter in Segovia was one of the first chapters outside of Managua. In Segovia, it began as a pre-school for children with disabilities that was staffed by parents and other volunteers. I spoke with Violetta, one of the founding members in Segovia and mother to three children who developed muscular dystrophy and died before reaching adulthood. "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 solidaridad with us." They quickly succeeded, going from a pre-school held in a one room community center to a relatively large complex of well-maintained offices, classrooms, physical therapy clinic, auditorium, and workshops within two decades. When I began working with them in 2008, their largest in Segovia was a Youth Center that provided a day program for teenagers and young adults with disabilities who came daily for courses, vocational training, and other activities. It was also notable as the first site where two persons with Down syndrome married. In addition to local and international donations, the youth center was supported by products the youth made with volunteers. These items included furniture, candles, and crafts sold on premises and in local stores. The carpentry shop did particularly well, often having contracts to build tables and chairs for local businesses and municipal offices.
I interviewed parents in Los Pipitos who saw it as a means of inclusion for their children in the community, often describing their children "transformed" after they joined the Youth Center because they had been either isolated at home, bullied in regular public school, or learning nothing at the local Special School before. Once they began attending, they gained a community, new skills, and self-esteem. Violetta, for example, described her first son, as "At first he did not want to talk" but then "Quickly, he was independent. With all the kids [at Los Pipitos], he was talking and everything. And he became very intelligent."
From the Western perspective on disability and citizenship, however, Los Pipitos is a violation of rights. As a segregated (i.e. disabled only) environment where parents provide rehabilitation, it is representative of cases UPIAS leader Finkelstein protested as a "way we are unnecessarily isolated and excluded from full participation in society" (1976: 3). As a charity, it is also a violation because it operates without state support. During my fieldwork in Nicaragua, this view on Los Pipitos was institutionalized. In 2011, Los Pipitos' national office declared a new mission statement within the liberal-individualist framework, stating that its 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." The new mission statement was formulated without the knowledge of the parents in the Segovia chapter and presumably many others. I visited the national office in Managua and interviewed a senior program manager to understand the change. She bluntly explained that Los Pipitos had been told they needed to change international organizations promoting the CRPD:
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… 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.
Thus, they changed their mission to shift from self-help and mutual aid to legal advocacy. This change, however, had a direct effect on the Los Pipitos chapter in Segovia, which had become one of the largest local chapters and was the only one to operate a Youth Center. The national office directed Segovia to close the Youth Center and replace it with disability rights advocacy initiatives, which the parents in Segovia resisted. Things came to a head in 2012 when the national office took the extraordinary step of dissolving Segovia's local board and installing a new executive director from Managua who had previously ran the country office of an international women's rights advocacy NGO. Within a week of the new director's arrival, the Youth Center was closed, the children sent home, and only invited back once a week to participate in human rights workshops where they were given consciousness-raising lectures on the oppression of persons with disabilities in society, the contents of the CRPD and Nicaraguan law, and goal-setting focused on making rights claims. I attended a month of these sessions, which consisted of over thirty youth sitting in a circle in the beginning and ending in just half a dozen sitting in a row. Its curriculum was ostensibly participatory, but was overwhelmingly lecture-based as the youth increasingly became confused and withdrawn. It culminated in a march from a city park to the central plaza across from City Hall where the Los Pipitos youth were supplied with placards demanding their rights. It was at that time, that the Segovia chapter was allowed to elect a new board on the basis of Los Pipitos by-laws regarding local chapter independence. Within a week, the old board was reinstalled, the new executive director was fired, and plans were remade to open the youth center.
I spoke with the new (old) board shortly thereafter, to understand their plans. They broadly laid out a "back to basics" campaign, with the board president stating: "We no longer want an executive director anymore. Julia [the appointed director] 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. For her, it [solidaridad] is not there, because she is a professional. She did it for a high salary. Not as a volunteer." At this point in the conversation, I explicitly asked the board members to explain solidaridad. 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.
The defining feature of solidaridad is interdependence and the sharing of resources. Participating in self-help is an essential feature. The board secretary outlined their new strategic plan.
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.
These new activities were also contextualized as part of Segovia's larger development. For example, other members had contacted a local cigar manufacturer about Los Pipitos producing cigar boxes. "Out of solidaridad, he said yes. He'd give us the resources, plus a percentage of his profits." In this way, they contributed to his business and he contributed to the vocational education of the youth and the association's sustainability.
The case of Los Pipitos in Segovia highlights the importance of participation in citizenship. The attempts to reform the association to be a rights advocacy organization sidelined the ability of the parents to participate in self-help, and thus they resisted out of their strong allegiance to solidaridad as a requirement of citizenship. While my IRB did not allow me to directly interview the youth with intellectual disabilities themselves, in observation it did not seem the rights perspective on their experiences resonated either nor did it further integrate them into the community. Instead, it distanced them by making them protestors on the outside rather than contributors to larger economic and civic network as the partnerships with businesses (i.e. cigar boxes) were intended to do.
The Organization of Disabled Revolutionaries
The last organization was also similar to the Nicaraguan Association of the Blind and Los Pipitos' local chapter in Segovia. The Organización de Revolucionarios Discapacitados, or Organization of Disabled Revolutionaries, also had its roots in the Sandinista Revolution. Its ties between solidaridad and citizenship were even more direct. The members were ex-Sandinista soldiers that had been wounded during the Revolution or subsequent Contra war. Therefore, their disabilities were emblematic of their service to the community and much of their organizational practice was devoted to celebrating their members as "war heroes" (Bruun 1995), but their most important function was to organize disabled veterans for self-help and service.
The ORD was founded in 1982 as a national organization in Nicaragua for disabled Sandinista veterans to assist other disabled Sandinista veterans when they returned home. To that end, it provided peer support, but also concrete services ranging from manufacturing wheelchairs to placing members in jobs or assisting them register for benefits. These practices provided physical, material, and psychological aid. In fact, a study conducted in the 1990s by Norwegian researchers on Post-Traumatic Stress Disorder found that incidence amongst ex-Sandinista soldiers in Nicaragua was surprisingly low, an outcome they attributed to the active social support they received from organizations like the ORD (Sveaass & Castillo 2000:). At the time of my field research, the ORD represented about 16,000 members nationally, but I only focused on the chapter in Segovia, which had about seventy active members, the majority of whom were middle-aged men with physical impairments. These members always referred to themselves as lacerados de la guera (war wounded) rather than the broader term personas con discapacidades (persons with disabilities).
The ORD was unique among the DPOs I studied in terms of how strongly it continued to identify with the Revolution, oftentimes echoing the political rhetoric of the Sandinista Front that argued that the Revolution was ongoing. Thus, the ORD's past military service continued to motivate their identities twenty years later. Denis, who was the local chapter president, for example, described his members' solidaridad with the broader community as one of constant dedication to the common good with no expectations in return:
We never said we are going to fight for you [the community] to give us shelter, we never said we are going to fight for you to give us a pension, we never said we are going to fight so that my family is well—nothing of the sort. 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 [the 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.
The service, however, was not only in the past, but ongoing. For example, in preparation for the 2011 elections, the ORD organized its members to prepare polling places by pouring ramps and otherwise ensuring they were accessible. On Election Day the members and additional volunteers volunteered at the polling places as "guides" for persons with disabilities. This entailed helping to push people using wheelchairs, leading persons who were blind to the voting booth, and so forth. The handful of members that had their own vehicles also drove other community members, usually persons with disabilities or older persons, to the polling place and back.
These election activities, however, were partially motivated through partisanship. While the ORD was officially non-partisan, its members were overwhelmingly members of the Sandinista Front and they believed that the FSLN would be victorious because it had many policies promoting opportunities for vulnerable groups, including persons with disabilities. Importantly, however, Denis, like Luis and the new board of Los Pipitos, did not expect the state, including a Sandinista-led government, to provide all of the social rights of a modern welfare state. When I asked Denis about the government's ability to provide social benefits, he bluntly responded: "We know the economy worldwide is screwed and that governments are not gods, they cannot raise [up] the country overnight." This comment strongly reflects critical disability scholars, such as Meekosha or Grech, who argue that the Western disability rights paradigm of citizenship must be rethought for low-resources Southern states.
The ORD's self-help activities were numerous. Denis, who worked as a security guard, spent his late afternoons and part of his weekend in the ORD's two room office, which was provided free of charge by the municipal government in a repurposed building for civil society. Members and others would stop by, often with a request for assistance. A typical request may be help in transporting an ex-soldier home who had died in a neighboring country (i.e. Honduras or Costa Rica) or for financial assistance for a member who had become sick. For one member, who was a double-amputee who had subsequently become an alcoholic and become homeless, the ORD had converted half their office—the back room—into his home with donated furniture and some light construction. He lived there free of charge and continued to benefit from other members who paid for the propane for his stove. This, however, was a "critical" or extraordinary case. The more typical were addressed with a small rotating fund that the ORD had created from small contributions from all of the members. It could then be loaned out at no interest to assist a member through a crisis. Fernando, an active member of the ORD in Segovia explained how important it was that disabled ex-combatants were performing self-help and mutual aid to one another rather than others assisting them. "You will see that here [the ORD office] we have ex-combatants with disabilities coming all the time and we are going to help them, perhaps not as much as a doctor or with medicine or something, but they need someone who shared their experience in the war."
When the ORD's own resources proved insufficient, however, Denis and others often burst into action, directly soliciting help from other (non-disabled) veterans. This aspect of ORD's work highlights their unique identity and the special claims to citizenship that other persons with disabilities could not make. When seeking aid from the larger community, the ORD explicitly made claims on their identity as war wounded. For example, Segovia's city council was controlled by the Sandinista Party and many elected officials were also veterans. Thus, when asking for assistance from a municipal fund, the ORD emphasized the member in needs' past service. This identity as a soldier who sacrificed while protecting the community epitomized solidaridad; it also revealed the double-sidedness of solidaridad as a means for citizenship. While self-help and service serves as a means for inclusion by allowing marginalized groups to be recognized for their contributions, it also potentially excludes those who have not contributed from membership.
The military service aspect of ORD's citizenship highlights debates within citizenship scholarship regarding civic-republicanism, which focuses on duty and sacrifice toward the common good (Hosking 2005; Pocock 1998). The citizen-soldier is often the ideal of civic-republican citizenship (Hosking 2005) and, according to Max Weber, the very concept of citizenship originated in ancient Greece as a "soldier's guild" (1981: 331). Civic-republicanism can also be interpreted as meaning "Active participation is the core of the citizens' civic virtue and the criterion entitling them to a larger share of the community's material and moral resources" (Shafir and Peled 2002: 5). This aspect of their citizenship, however, was under threat with the introduction of the Western disability and citizenship paradigm focused on all citizens with disabilities having equal status and equal claim on their protected rights. That meant that war wounded were no different than all other persons with disabilities. With the CRPD, which does not mention veterans with disabilities and promotes one set of social rights for all persons with disabilities, Nicaragua reformed its disability policy to give the same rights and benefits to all persons with disabilities. Because of this, many ORD members worried that as Segovia's collective memory of the Revolution receded and laws changed, they would lose their place in society.
In recounting the ORD's origins, Denis recounted how "just after the war ended, we felt and we were gloriados (glorified or celebrated persons)…" That glorification, however, was now thirty years in the past. Fernando lamented in an interview that "There is no longer the merit of before, during the 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…" Finally, Javier, another longtime member of the ORD in Segovia, put the situation more succinctly: "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." At the end of our conversation, which took place in Javier's home, he took down a framed photograph of him decades earlier as a soldier in the field. As I left, he was still staring at it with nostalgia.
Discussion and conclusion
The concepts that we use as scholars, practitioners, and activists not only determine what we can see, but motivates the types of things we give ourselves license to do. The way citizenship and disability has been narrowly defined in the West has not only resulted in the vital contributions of grassroots self-help associations being ignored, but international projects in the name of citizenship and human rights being implemented that reject proposals for income-generation that are needed to expand education and employment services, shut down youth centers that are transformative in young people's lives, and make war heroes that sacrificed limbs feel they were now experiencing even greater loss.
The Western understanding of disability and citizenship was forged in a context of powerful social welfare states that empowered "expert" others to subjugate persons with disabilities in the name of their rehabilitation. Thus, the emergent disability movement sought to transform these social welfare services into rights that they as organizations and individuals would control. This powerful movement was directed at the state, both forcing it to guarantee rights through concrete material benefits, but also holding its power at bay by making it accountable to persons with disabilities. This state formation, however, is specific to the West.
The majority of persons with disabilities live in states where there is no modern welfare state to guarantee their social rights nor to use social welfare to take their individual liberties away. Thus, grassroots disability associations have come forward to collectively address their members' struggle for survival, but to also give their members control over the services they receive. This interdependence and self-help is how citizenship is realized for many persons with disabilities across the Global South. In my case of Nicaragua, the Nicaraguan Association of the Blind, Los Pipitos, and the Organizations of Disabled Revolutionaries each addressed their members' needs. In doing so, however, they also demonstrated to the larger community that they are a contributing force in society and part of a shared culture of solidaridad that is essential for the community's development. These initiatives, of course, are not without their own limitations. The NAB's ability to educate or help employ persons with disabilities is limited by the funds they are able to generate, the Los Pipitos Youth Center may be serving parents and their need to participate as much or more than their children with disabilities, and the ORD's contributions in the past are increasingly having less resonance today. But to replace these citizenship practices with Western concepts and practices is an imposition that ignores local understandings and may serve international goals far more than local objectives.
Disability studies scholarship is increasingly including research on the Global South. In doing so, it is important that as researchers, we recognize the fact that our theory was formulated in relation to the study of disability and citizenship in the West. Meekosha (2008), Grech (2011), Chataika (2016) argue that it is against the very essence of disability studies, which fashions itself as an emancipatory discipline, to continue silencing the voices of the vast majority it putatively wishes to set free. I also argue that understanding local perspectives can shed light not only on the citizenship and disability there, but also on those of us positioned in the West.
Expanded notions of disability citizenship as including self-help, mutual aid, and relations of interdependence have the potential to train the spotlight on important aspects of disability history in the Global North. For example, Society for Disability Studies' founder Irving Zola argued that persons with disabilities forming their own self-help organizations was as politically potent as public protest (Williams 1996: 108) because they broke cycles of dependency and built community. Shapiro (1994) emphasized the importance of disability-run wheelchair repair workshops as interdependence leading to empowerment in Berkeley's Independent Living movement. Many countries and movements maintain multiple citizenship discourses without one needing to win over the other (Shafir and Peled, 2002). Disability citizenship must be recognized as being achieved in multiple ways dependent on the local context and the meanings it gives to disability, citizenship, and myriad other contexts often taken for granted by outside researchers, activists, and others.
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