Over the past several years, I have been studying the interactions between the global disability rights movement—all of the UN agencies, international NGOs, and transnational networks focused on advancing the human rights of persons with disabilities—and a small coalition of grassroots disabled persons associations in Nicaragua. While the international disability rights movement has thus far received scant scholarly attention, I believe it is a harbinger of things to come. In recent years, there has been a major shift in the practices of international development NGOs away from humanitarian assistance and concrete project implementation towards “being allies with people’s organizations and social movement in a collective struggle for change” (Chapman 2009, p. 167). Rather than providing food aid or digging wells, mainstream NGOs are now prioritizing increasing the “political knowledge” (Williams, 2007) of marginalized groups as the best way of addressing their vulnerability. This rights-based approach to development is based on a belief that local political advocacy can solve global poverty, albeit one community at a time, and a shift away from trying to spur market growth or build up governments to a new focus on remaking civil society. In short, it is development done by social movement, regardless of the level of economic development or governmental capacity of a specific country.
In 2006, the UN adopted the Convention on the Rights of Persons with Disabilities (UNCRPD). While the UNCRPD may first appear to be just the latest iteration of a long list of international human rights instruments focused on specific groups (i.e. children, women, racial and ethnic minorities, indigenous peoples), it actually represents a sea change. For the first time, an international human rights convention explicitly includes civil society and specifies their place as monitors of their own human rights within the convention itself. The UNCRPD’s General Obligations state that “persons with disabilities [shall be] actively involved in the definition and implementation of their rights, through their representative organizations” and Article 33 further spells out that Disabled Persons Organizations “shall be involved and participate fully in the [treaty’s] monitoring process.” No prior human rights instrument includes this type of language. As such, while UN conventions have long been viewed as products of global civil society advocacy, the UNCRPD is also a producer of local civil societies as it spreads out and is signed and ratified by new countries. Simply put, the UNCRPD is a blueprint for how persons with disabilities should be organized and the activities they should pursue. And, therein, lies the problem…
For decades people with disabilities around the world have come together and created their own local, civil society associations. The overwhelming majority of those groups, however, have focused on social support and self-help. In Nicaragua, for example, groups of persons with disabilities dating back to the Sandinista Revolution in 1979 have done everything from build their own wheelchairs (a group of disabled veteran soldiers) to teaching one another how to read Braille and use a walking cane (a small organization of individuals with visual impairments). They have not, however, typically framed their needs in terms of human rights nor advocated for the government to fulfill them. Instead, as is the norm in Nicaragua, they have voluntarily come together to share resources under the rubric of solidaridad (solidarity). This cooperative, service-provision focus in organizational practice, however, is out of step with the UNCRPD’s conception of disabled persons organizations as definers, monitors, and advocates of their rights.
Since the signing of the UNCRPD, international disability NGOs have flooded the Global South with trainings and seed funding meant to engender rights advocacy. In my field site in Northern Nicaragua, for example, the Disability Rights Fund has given out grants that are for the explicit goal of “strengthening local stakeholders who can hold governments accountable for fulfilling the rights of persons with disabilities,” Handicap International has implemented a series of workshops and organized all of the local disability groups into a coalition as part of their global Making It Work campaign to “strengthen [disabled persons’] advocacy to influence social change,” and CBM International (originally Christian Blind Mission before secularizing) has sought to incorporate local groups into their International Advocacy and Alliances partnership program for promoting “the guiding frameworks of the UNCRPD.” While the stated goal of all these initiatives center on advancing the human rights of persons with disabilities, their practical objective is to get grassroots disability associations to fit into their chosen organizational model of persons with disabilities coming together to do political advocacy—march in the streets, report violations of the UNCRPD, and propose new local laws and ordinances focused on nondiscrimination and increased political representation of disabled persons. The outcomes measured are not the effectiveness of these new practices, but how tightly wedded they are to global guidelines.
In a series of papers that methodologically rely on an “inhabited institutions” approach (Hallett and Ventresca, 2006) to World Society theory (Meyer et al., 1997), I framed the interactions between the international disability rights movement and grassroots disabled persons associations as a case of an organizational model disseminating within an institutional environment (Meyer and Rowan, 1977). But rather than look at surface similarities between disability associations in the aggregate, I took a deep ethnographic look that revealed that the local groups in my field site underwent intense negotiations that often yielded creative solutions to the top-down pressure they felt to conform to a global norm, but the bottom-up necessity of remaining relevant in their members’ lives. This did not mean there was both active and passive resistance: some organizations that began to focus solely on advocacy began to hemorrhage members who joined expecting help in learning how to cope with their disability (i.e. learn how to use a wheelchair) or meet concrete needs (i.e. access microcredit or gain assistance in finding a job) and other organizations, after initially accepting international help, rejected it and often became hostile to the movement in general and even more committed to their original, service-oriented goals. Only a small subset were able managed to fully combine elements from the international focus on human rights and the local concern with social support and solidarity.
To date, this research project has yielded six journal or edited volume publications that are either already in print or forthcoming. My three most recent are “The Social Model under the Shadow of the Revolution: Ex-combatants negotiating disability identity in Nicaragua,” which will be in the next issue of Qualitative Sociology; “Global Civil Society as Megaphone or Echo Chamber?: Formalizing voice in the international disability rights movement,” which is currently on-line and forthcoming in print in the International Journal of Politics, Culture, and Society; and “Disabled persons associations at the crossroads of two organizational environments: Grassroots groups as part of an international movement and a local civil society,” which is in the 8th volume of Research in Social Science and Disability.
In an era where global actors can “manufacture civil society from the outside” (Howell and Pearce, 2011, p. 89)—or remanufacture civil society, as the case may be—I believe that an ethnographic approach that focuses on the way small groups negotiate environmental pressures to change (Hallett and Ventresca 2003; Fine 2012) are extremely important when sociologists investigate the spread of social movements centered on disseminating particular types of organizational structures and practices. I also believe that the international disability rights movement is particularly insightful in this regard given how quickly the practice of political advocacy has been institutionalized and how explicit it has been made through its incorporation into an international legal instrument (i.e. the UNCRPD).
Chapman, J (2009). “Rights-Based Development: The Challenge of Change and Power for Development NGOs.” Rights-Based Approaches to Development: Exploring the potential and pitfalls. S. Hickey and D. Mitlin. Sterling, VA, Kumarian Press: 165-185.
Fine, G. (2010). “Sociology of the Local: Action and Its Publics.” Sociological Theory. 28(4): 355-376.
Hafner-Burton, E. and K. Tsutsui, K. (2005). Human Rights in a Globalizing World: The Paradox of Empty Promises. American Journal of Sociology. 23: 1373-1411).
Hallett, Tim, and Marc J. Ventresca. (2006). “Inhabited Institutions: Social Interactions and Organizational Forms in Gouldner’s Patterns of Industrial Bureaucracy.” Theory and Society. 35, 213-236.
Howell, J. and J. Pearce. (2001). Civil Society and Development. Boulder, CO: Lynne Rienner Publishers.
Meyer, J., J. Boli, G. Thomas, F. Ramirez. “World Society and the Nation-State.” The American Journal of Sociology 103.1 (1997): 144-81.
Meyer J., B. Rowan. (1977) ‘’Institutionalised Organizations: Formal Structure as Myth and Ceremony’’ The American Journal of Sociology 83(2), 340-363.
Williams, G. (2004). “Evaluating participatory development: tyranny, power and (re)politicisation.” Third World Quarterly. 25(3).