The UN Convention on the Rights of Persons with Disabilities represents an important innovation in international law. For the first time, states are legally obligated to seek the advice of civil society organizations representing rights-holders in the development of legislation and policies and the monitoring of their implementation. In Nicaragua, however, the civic history of the Sandinista Revolution and civil war has left the local disability movement divided. Disabled war veterans want laws guaranteeing special treatment; self-help groups would rather focus on providing their own services than advocating for new laws. This demonstrates that the success of the CRPD’s civil society provisions is as dependent on the local identities and experiences of disabled people as it is on states’ adherence to international law.
This is the sixth in a series of essays on disability and equality around the world.
Central America has a unique civic history that dates back to the civil wars and communist revolutions that erupted in the region toward the end of the 1970s. Through much of the 1980s and into the 1990s, Nicaragua, Guatemala, Honduras, and El Salvador were embroiled in conflicts that continue to shape the region today. Although the effects of this period cut across Central America’s political, economic, and social landscape, one consequence deserving of particular attention is how the history of conflict calls into question the idealism of the Convention on the Rights of Persons with Disabilities (CRPD), as well as assumptions about the role civil society should play in representing disability interests. Recognizing the impact of civic history on relations between marginalized groups and their states offers insight into the power and potential of integrating new roles for civil society into international human rights law.
The CRPD, adopted by the United Nations General Assembly in 2006, is a landmark among international human rights instruments. It protects the rights of the world’s largest minority—the estimated 15 percent of the global population that is disabled. The convention’s fifty articles cover the full pantheon of rights, ranging from education and voting to more disability-specific rights, including rehabilitation and social protection (such as social security benefits). Yet its truly groundbreaking provisions focus on civil society.
The CRPD explicitly obligates signatory states to “closely consult and actively involve persons with disabilities…through their representative organizations” in developing and implementing legislation and policies relating to disabilities. It also requires them to ensure that “[c]ivil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process” of the CRPD’s implementation.
Although the participation of civil society organizations in human rights debates and the monitoring of rights violations has a long history, these two articles in the CRPD are unique. They represent, for the first time, the creation of an explicit positive legal obligation for states to seek the input of organizations representing rights holders on all levels of development, monitoring, and implementation of human rights.
In short, these provisions make persons with disabilities the makers of their own histories. By actively integrating advocacy into the convention, they recast persons with disabilities, who have historically been forced into dependency in the societies in which they live, as agents defining their own futures, with direct influence over their inclusion by the state.
As revolutionary as this aspect of the CRPD is, it should come as no surprise. The motto of the international disability rights movement is “Nothing about us without us!” This demand is reflected in the history of Western disability rights movements. Many of the most prominent disability rights activists from the United States, the United Kingdom, and other Western countries where persons with disabilities first mobilized were intimately involved in the advocacy for, and drafting and popularization of, the crpd. The convention also reflects a guiding assumption that persons with disabilities and grassroots organizations representing them will embrace an understanding of civil society as standing outside the state and pushing it to implement the human rights framework laid out by the CRPD.
And yet, despite broad acceptance of the CRPD around the world (with 182 ratifications and accessions to date), local disability civil societies often remain fragmented and have not followed the path indicated by the convention. Many international disability rights activists view this fragmentation as the result of a lack of awareness or an underdevelopment of political consciousness among persons with disabilities in different locales. But I argue that it reflects local civic histories that have established different relations among the state, civil society, and persons with disabilities. This means that understanding local civic histories is necessary in order to understand the localization (the process by which international law is incorporated into domestic law) of the CRPD and the unintended effects of its civil society provisions.
Nicaragua’s revolutionary period (1979–90) provides a striking example of how Central American civil societies were forged in a unique way that continues to impact daily life. Disabled Sandinista soldiers were held up as exemplars of service and sacrifice during the civil war, and were given a special place in society that still shapes their participation in disability politics today.
Disabled Sandinista soldiers were held up as exemplars of service and sacrifice.
Meanwhile, the chronic lack of state resources, particularly in the area of social welfare, pushed other persons with disabilities to band together to form social-support or self-help organizations to address their education and livelihood needs. Many of these groups remain proud of this legacy and skeptical of the state’s role in implementing social and economic rights. These grassroots organizations, associations representing war veterans, and other members of disability civil society rooted in the civic culture of Nicaragua’s revolutionary period are divided and circumspect in their evolving roles as advisers and advocates for their rights under the CRPD.
Creating unity in diversity has been the central challenge across modern disability movements from their beginnings in the 1960s to the present. The unifying device introduced in the West for raising the consciousness of persons with disabilities was the social model of disability. This perspective mobilized a broad coalition of disabled persons by emphasizing that regardless of their different types of impairment, whether physical, sensory, intellectual, or mental, they faced a common enemy. It was society, personified in the state, that refused them individual agency.
This perspective shifted the focus from individuals with impairments to the way society “disables” impaired persons through physical, attitudinal, and legal barriers that prevent them from participating on an equal basis with their nondisabled peers. Originators of the social model focused on the undue power granted by the social welfare state to health-care providers, educators, social workers, and legal authorities to decide how persons with disabilities would be cared for, educated, and provided with services. Legal guardians were often appointed to make decisions for them. Until the 1970s, institutionalization was almost universal among persons with disabilities, who were forced to live in hospital wards, nursing homes, and residential schools regardless of the nature of their disabilities.
The Western disability movement did not reject services; it demanded both individual and political control of them. By claiming the right to advise on legislation and policy, rather than allow nondisabled doctors, social workers, and philanthropists to speak for them, disabled persons won the basic civil right to determine the time, place, and manner of the support they received from the state. Through advocacy, they effectively rolled back the state without losing the services on which their independence depended. But in Central America and much of the global South, the problem of an all-too-powerful state is a much more complicated case to make.
The social model has been globalized by the CRPD, whose preamble states, “Disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.” The CRPD also enumerates the accommodations, supports, and services to which persons with disabilities are entitled, and ensures their control over them through the civil society articles and specific civil rights, such as the right not to be institutionalized.
From the beginnings of disability studies research in the global South, however, the basic premise of the social model and its connection to the welfare state has been questioned. Anthropologists, sociologists, and others have noted that disabled persons in the global South and organizations representing them are focused on a constant struggle for survival or the immediate need for rehabilitation, whereas disability movements in the West are focused on rights.
This critique highlights an important difference between the experiences of disabled persons in the global North and South, including Latin America. But resource scarcity is only one factor that shapes local disability movements and the identities of their participants. Local civic histories help explain the ways in which different groups of persons with disabilities have come together to address the needs of their members—and how they distinguish themselves or join with others, pursuing either separate claims or common cause.
Struggle and Solidarity
Nicaragua provides a very different context than the West for the study of disability movements. After Haiti, Nicaragua is the poorest country in the Western Hemisphere. With a gross domestic product per capita of just $1,900 in 2020, the relative wealth of its citizens is less than a thirtieth of that of US citizens. That gap in relative wealth is arguably even greater between Nicaraguans with disabilities and their US peers, given the lack of safety nets and opportunities in the context of widespread poverty.
The lives of persons with disabilities in Nicaragua often center on a struggle for services beyond the most basic health needs, in the absence of a social welfare state and modern medical care. Civil society has often played an outsized role in Nicaragua in meeting the survival needs of the population. Social and economic rights take precedence over the civil and political rights that have animated much of Western civil society and disability movements in the West.
Relative poverty is just one force that has shaped Nicaragua’s civic history. A more important contributor is the Sandinista ideology of solidaridad (solidarity) that became the rallying cry of the Sandinista Revolution and the guiding ideology of popular organizing in its aftermath. Augusto Sandino was a guerrilla fighter and self-taught intellectual who led a peasant rebellion that ended the US occupation of Nicaragua in 1933. Although he was assassinated by the US-backed dictatorship of Anastacio Somoza in 1934, Sandino’s philosophy of nationalism, pragmatic Marxism, and Catholic humanism was adopted by the Sandinista National Liberation Front (FSLN), which led the 1979 revolution against Somoza’s son, Tachito.
Part of the Sandinista philosophy was a rejection of a powerful centralized state in favor of a unique form of democratic socialism, in which “the people” were empowered to take on many functions of the state. What this meant in practice, after the FSLN took power in 1979 under the leadership of Daniel Ortega, was that the Catholic Church, labor unions, farmers’ cooperatives, and others organized to provide much of the health, education, and other services that a state would normally deliver through its ministries. The most famous example at the time was the National Literacy Crusade, which mobilized 95,000 volunteers to go across the country to teach basic reading skills in the poorest barrios and remotest villages. The effort resulted in a 37 percent drop in the illiteracy rate in just five months. This form of collective action became a template for all subsequent civil society organizations initiated in the postrevolutionary period, lasting until 1990, when the Sandinista government finally left power after losing elections. It also became a template for disability organizations.
Today, the FSLN is back in power, and the Sandinista ideology of “people’s power” and dedication to the common good has taken on a new salience. Ortega, who returned to the presidency in 2007 and has been reelected to two more terms since then, has vowed to “continue the revolution.” Part of this continuation involves reliance on civil society to help the government reach many of its social and economic objectives.
Nicaragua was one of the first countries to sign and ratify the CRPD, just months after it was adopted by the UN in late 2006. The CRPD’s articles on civil society created new opportunities for existing Nicaraguan disability associations to advise on and monitor implementation of their rights. A number of international nongovernmental organizations and donors, such as Handicap International (now Humanity & Inclusion) and the Disability Rights Fund, helped set up new disabled persons’ organizations.
Perhaps the most important of these latter groups is the Federation of Associations of Persons with Disabilities (FECONORI), a national coalition that was initiated in 2006 and has been funded since then by a group of European donors. FECONORI states that its purpose is “to lead the process of implementation of national and international legal frameworks in reference to the Convention on the Rights of Persons with Disabilities, for full enjoyment and effective rights.” To that end, FECONORI represents 21 different disabled persons’ organizations in Nicaragua, ranging from the Association of Psychiatric Patients to the Association of the Deaf-Blind of Nicaragua.
The initial step toward FECONORI’s objective of local implementation of the CRPD framework was accomplished in 2011 with the passage of Law 763, the National Disability Law, by the Nicaraguan Assembly. In many ways, Law 763 is a carbon copy of the CRPD: it enumerates virtually all of the same rights and often uses the exact same language. In the decade since its passage, however, much of the law has gone unimplemented.
A recent and egregious example of its failure occurred during the national elections in November 2021. Though there were many concerns regarding the fairness of the elections—Ortega won his fourth term in office by having most opposition candidates imprisoned—the election was also a direct violation of both the CRPD and Law 763. Both guarantee voting access for people with disabilities, including physical access to polling places, ballots in accessible formats, and reasonable accommodations and personal assistance to ensure that individuals can cast their votes. European observers and local disability rights advocates found that Blind and visually impaired Nicaraguans were afforded no Braille ballots, and many polling places were located in buildings physically inaccessible to persons with mobility disabilities. In fact, many of those polling places were in schools, further indicating the lack of progress not only in voting rights, but also in disability inclusion in education.
The lives of persons with disabilities in Nicaragua often center on a struggle for services.
FECONORI tries to mobilize its member organizations to address these issues and press the government to promote disability rights. But many decline to participate, and at least one, the Organization of Disabled Revolutionaries (ORD), works at cross-purposes with the federation. Others see little point in holding the state accountable for the provision of opportunities and services that they believe it has little capacity to provide.
Privileged War Veterans?
The ORD was the first disability advocacy organization in Nicaragua, and it is still one of the most prominent. It stands on one side of a deep fault line that runs through the Nicaraguan disability movement. As the representative of disabled Sandinista veterans, it has consistently argued that its members should be prioritized over other Nicaraguans with disabilities for access to state services and social benefits. With Ortega back in power, the ORD has further committed to going it alone, believing that it has a special relationship with both national and local government officials.
Founded in 1982, the ORD today has a membership of approximately 15,000 ex-Sandinista soldiers who were wounded during the civil war that followed the 1979 revolution. Former members of the National Guard, which had been Somoza’s personal army, led a US-backed counterrevolution and became known as the Contras. The conflict lasted nearly a decade. The ORD was formed as a civil society organization to serve the thousands of wounded “war heroes” who returned home from the front. (After the 1990 peace accords, many wounded Contra soldiers returned to Nicaragua, where they were often marginalized in their communities and denied access to rehabilitation and other benefits and services.)
The ORD has historically had a number of functions. The first is social support, which at one point included a workshop operated by the ORD to build and repair wheelchairs for members. Local chapters provided mutual aid, such as collecting funds to help a member through a crisis. The ORD also solicited assistance for its members, for example by contacting government leaders, most of whom were fellow Sandinistas, to ask for jobs. To this day, it is common to find ORD members employed in government offices. Many have worked as security guards and night watchmen in schools and other municipal buildings.
During my fieldwork from 2008 to 2012, I observed that ORD members described themselves as lacerados de la guerra (war wounded), rather than personas con discapacidades (persons with disabilities), emphasizing that they had an identity that set them apart. It was also clear in my interviews and observations that they felt they held an important moral position in the community. Denis, the president of a local ORD chapter in a northern city that had experienced heavy fighting during the civil war, told me, “We are the dead, the wounded, and the wounded ex-soldiers who participated in the war—that is, the Revolution.” Thanks to the Sandinista government, he said, “the mothers of heroes and martyrs…are eating a little better.”
In fact, the ORD’s work in civil society was complemented by meager state rehabilitation and social welfare benefits for disabled ex-combatants. This state support was codified in 1990 in the form of Law 119: Granting Benefits to Victims of War. This law directs the Nicaraguan Institute of Social Security and Welfare to grant “life pensions for permanent disability, prostheses, rehabilitation service, and professional rehabilitation to Nicaraguan victims of war when they suffer illnesses, injuries, mutilations, or any degree of incapacity as a consequence of their participation in the war.”
Law 119 was never implemented, however. The Sandinista government fell from power the same year the measure was passed. More than two decades later, members of the ORD were increasingly hopeful that with the Sandinistas back in power, the law would finally be implemented. The ORD continued to assert a special moral claim to scarce state resources.
In my interviews with local members of the ORD, one told me, “Because we have acquired our different disabilities while contributing to the country, I think [the government] should give us special attention.” Another said that as the civil war became a more distant memory for many Nicaraguans, ORD members were losing their status: “It is clear that we need more support, especially because a lot of times, we are forgotten, or not remembered—the sacrifice that a person who fought in the war has made.” Yet another ORD member lamented:
In the hospitals we are already not being treated as people with disabilities from the war, but instead we are treated like any other.…There is no longer the priority for the person who went to war.…”
The National Disability Law 763, which was passed in 2011 in large part due to the advocacy of FECONORI, represented an existential threat to the ORD. It replaced all previous disability laws and subsumed all people with disabilities into a common identity and beneficiary group. Immediately, the ORD national office began working at cross-purposes with the national disability rights movement, petitioning the government to exempt its members from the new law and reinstate Law 119 to cover them. The ORD argued that it was society’s “moral obligation” to prioritize disabled soldiers because they exemplified solidarity with the state.
In an interview, a national ORD board member portrayed the changes in disability laws as a zero-sum game. Gains for the national disability movement necessarily meant a loss for members of the ORD, he argued, given the general scarcity of rehabilitation and other social welfare benefits.
The ORD withdrew its participation in FECONORI, whose leadership was criticizing the ORD for refusing to be team players. FECONORI had lost one of its most prominent member groups—the one with perhaps the strongest ties to the Ortega regime. This fracture belies the idealism of the CRPD, which assumes that disability civil society will share a common identity, rather than be divided by opposing identities and claims that some persons with disabilities are more worthy than others.
Nor do participants in the disability movement necessarily see the government as a common enemy. Different experiences with governmental support have led some to view the state as an ally that has prioritized their needs, whereas others see it as having neglected its responsibility. Meanwhile, Law 763 continues to go largely unimplemented.
Self-Help or Human Rights?
In addition to creating privileged identities within disability civil society, the revolutionary period also gave birth to a number of disability self-help groups. They embodied the voluntary spirit that characterized the Literacy Crusade. This spirit was pragmatist as much as it was idealist.
After the revolution, the Sandinista government inherited a country bankrupted by the Somoza regime. The dictator and his family had left the country with suitcases of cash pilfered from the treasury. There was no budget to carry on basic operations. The situation was made even more dire by the advent of civil war and economic sanctions imposed by the Reagan administration, which viewed the FSLN as a socialist threat.
In the decades since, Nicaragua’s economic fortunes have not substantively changed. Some disability rights organizations have seen little purpose in changing the law and advocating for the government to meet its obligations under the CRPD, despite international funding for disability advocacy. The president of the Association of the Blind explained to me his analysis of differences between local and international disability movements in relation to state capacity:
In the perspective of the international organizations, their professionals, and the people and the leaders with disabilities that are in America and Europe…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.
As with the ORD, the origins of the Association of the Blind go back to the revolution. Luis, its founder and current president, had been blinded during a battle in the late 1980s. He was sent to Cuba, an ally of the Sandinista government, for rehabilitation. While there, Luis learned to read Braille, use a walking stick, and otherwise live independently. But when he returned to Nicaragua, he realized that he was largely alone in having the skills to live independently as a Blind man.
Shortly after his return, Luis and several other visually impaired people founded a grassroots association. He said, “I was motivated to join with them since I had the possibility of studying in another country, so I wanted to join an association with the purpose of helping other people, blind like me, have that opportunity.” Their first project was to create a “micro-school” where members taught one another basic skills that ranged from reading and writing Braille to riding the bus or going to the store. After members learned to become independent, they were expected to help teach others.
By the time I encountered the Association of the Blind, it had 200 members, a small residential school where children from rural villages could stay for a few months to learn skills for independence, and several employment projects. The latter included a bicycle-repair business and relationships with cigar factories and other local businesses where members could be placed for training.
Luis explained that his commitment to the Association of the Blind was the same as his original commitment to the Sandinista Front—to build a better society through solidarity. Although he was certainly not against the CRPD or Law 763, his association and others felt that their time, effort, and resources were better spent directly helping their members—running the school or making job placements—than advocating for the implementation of laws that the government had no capacity to carry out.
This attitude created friction with FECONORI. In an interview, a FECONORI board member commented on the federation’s differences over rights advocacy with more grassroots disability associations like the Association of the Blind:
They have other goals, objectives, another vision, which is difficult because sometimes the associations have a focus that is not on human rights but for the poor, the beggars.…But the truth is that is not the issue, the struggle we have is to strengthen the capacities and the dignity of persons with disabilities, which is different than their approach.
Here, an umbrella organization meant to represent persons with disabilities before the government, in keeping with the CRPD, sees its own interests as separate from those of its member organizations. But although the work of providing education and jobs may not be human rights work per se, it is an approach that reflects the civic histories of disability civil society in Nicaragua, where disabled persons’ organizations have had to make up for the lack of state resources.
The unity achieved by disability movements in the West was the result of a shared experience of domination by service providers, medical experts, and others under strong social welfare states. People with disabilities came together to demand that they, not others, determine their own rights. That history is now universalized by the CRPD’s civil society provisions that obligate states to seek out the advice of disabled persons’ organizations on law and policy, and to ensure that they are involved in monitoring their rights.
But in Nicaragua, as in many other places in the global South, persons with disabilities have their own unique histories. Often divisions arise in the disability movement when certain groups, such as wounded war veterans, lack shared interests with other groups. Some groups see little use in advocating for new laws or demanding new rights, but instead focus on self-help and serving the immediate needs of their members. Recognizing the unique histories of specific groups in specific places is essential for understanding the extent to which international law can successfully create new roles and expectations for local civil societies.