Promoting Disability Rights for a Stronger Democracy in Brazil

Abstract

Although disability rights advocacy in Brazil began in the early 1980s, it was not until that nation’s 2008 ratification of the 2006 United Nations Convention on the Rights of Persons with Disabilities that the Brazilian state assumed responsibility for guaranteeing the rights of its disabled citizens. This article explores the efforts of the nation’s disability nongovernmental organizations (NGOs) and points to potential limitations of their initiatives to promote disability rights and democratic politics. I do so by examining the online materials of disability NGOs and through interviews with seven leaders of such organizations, conducted in 2011 in São Paulo, Brazil. The analysis draws on interview data and compares the disability rights literature with the claims of these organizations to consider how their advocacy strategies might be recast to help the nation’s heterogeneous disabled population attain both a common sense of identity and their rights as they seek full citizenship.

Keywords

disability rights UN Convention on the Rights of Persons with Disabilities advocacy democracy nongovernmental organizations Brazil

Until recently, binding instruments of human rights law did not explicitly recognize disabled individuals. Several international and regional human rights norms and agreements specifically addressed the disabled population, but none imposed requirements on signatory nations.¹ Acknowledgment of disability as a fundamental human rights issue has developed slowly around the world during the past three decades. The 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) represented the culmination of long-time efforts by many nongovernmental organizations (NGOs) to secure a specific agreement on disability rights.

Human rights in general (and disability rights in particular) represent relatively new values and concepts in Brazilian politics (Oliveira, 2001). Brazil first elaborated a human rights policy in 1996. That statute is currently in a third revised and expanded version enacted in 2009. The nation’s human rights policy has included disabled citizens since its inception, but it was only with 2008 ratification of the CRPD that the Brazilian state assumed formal responsibility for promoting and guaranteeing the rights of such individuals.

Disability advocacy NGOs have played fundamental roles both in negotiating the content of the CRPD at the sessions of an Ad Hoc Committee of the UN General Assembly and in efforts to advance the rights of disabled people in Brazil. Many of these organizations have sought to equip disabled people with knowledge and strategies aimed at advancing their rights claims with the government. Under pressure from these entities, the Brazilian government has devised several policies to implement the CRPD since the nation formally ratified it. This article argues that to effectively implement the disability rights agenda set out in the CRPD and to promote a stronger democracy, the nation’s advocacy NGOs need to encourage and sustain a broader dialogue in Brazilian society concerning rights of disabled citizens. Moreover, these organizations may need to recast their strategies to mobilize other societal actors by framing disability rights as a broadly relevant issue rather than a special interest.

The article’s argument is organized into three parts. First, I briefly discuss the CRPD’s significance for the disability rights movement in Brazil. As the nation’s first legally binding international instrument, the 2006 Convention potentially can act as a transformative force in the lives of all of the nation’s disabled citizens. Second, I use social movements scholarship to frame disability rights advocacy initiatives in Brazil in recent years and to assess their potential to promote democracy. Third, I analyze the advocacy strategies of the nation’s disability NGOs and point to potential limitations of their efforts to promote disability rights as well as participatory and deliberative democracy. I conclude by arguing that disability NGOs’ advocacy strategies need to be recast to promote broader participation and dialogue between civil society organizations and the government, which will not only advance Brazil’s human rights agenda but also promote a stronger democracy in that nation.

Method and Terminology

This article draws on individual semi-structured interviews with seven Brazilian disability NGO leaders that I undertook in the summer of 2011, when I explored the justice claims their organizations are advancing to promote disability rights.² I supplemented this effort with field notes and analytical memos. Later, when transcribing the interviews, field notes helped me bring to mind some important contextual details regarding each interaction. I also collected and analyzed governmental and NGOs’ materials concerning human rights and disability rights strategies as another key source of data.³

The interviews helped me gain insight into the perceived local importance of the CRPD for disabled people, the challenges faced by the government and NGOs in conceiving and carrying out policies within the new UN regime, and advocacy strategies that Brazilian NGOs have used in their attempts to secure the Convention’s full implementation. In addition, I explored and critically analyzed relevant governmental and nongovernmental organizational reports and websites to better understand the development of disability rights in Brazil in recent years.

It is important to clarify the terminology used here to describe individuals’ experiences of impairment and disability. I acknowledge and respect the choices that disabled people make in choosing how best to describe their identity and experiences. Some individuals prefer to use the term person with disability, while others use “disabled people” to describe themselves. Both disability advocates and NGO leaders I interviewed preferred “persons with disability,” or “pessoas com deficiência” in Portuguese, to place the individual first, before their disability, and to focus more on his or her potential rather than limitations. However, this descriptor can also be seen as problematic for efforts to construct inclusive citizenship by reducing “the difference-of-disability in favor of the sameness-of-personhood” (Michalko, 2002, p. 148). I also avoid using the term person(s), because in the liberal view, this expression implies powers of reason and free will, and such may be problematic for efforts to include intellectually impaired citizens in human rights claims in line with conventional liberal morality (Reinders, 2000, p. 16), because intellectually impaired individuals lack autonomy to varying degrees (Dimopoulos, 2010).⁴

I use the phrase “disabled people/citizens” throughout this article to point to those with various impairments who are frequent objects of oppression and discrimination, or “disabled,” based on society’s understanding of their identity and experiences. Those who ascribe to the social model of disability view the attitudinal and environmental factors in a society as “disabling” for people with impairments, preventing them from living a full life. This perspective implies there is a population with impairments that is not oppressed and is not subjected to discrimination, and thus, there would be no immediate need to include them in disability rights policies and actions. I contend, however, that laws and public policies should be extended equally to all people with impairments to address existing inequalities and to prevent further disparity within the population, with priority actions targeted to the most disadvantaged.

The Significance of the CRPD for the Disability Rights Movement in Brazil

The UN CRPD was the first binding human rights instrument in the long struggle of individuals with impairments worldwide to secure protection and promotion of their rights. Previous UN disability-related human rights regimes were not obligatory and failed to recognize impairment as a dimension of human diversity (Kayess & French, 2008). The UN and civil society organizations undertook several attempts in the 1980s to garner international community acceptance of a human rights convention specifically aimed at disabled people. The UN General Assembly’s decision to declare 1981 the “International Year of People With Disabilities” helped bring visibility to the issue. Subsequent UN adoption of the World Program of Action concerning Disabled Persons in 1982 and declaration of the UN Decade of Disabled Persons 1983-1992 also aimed to sensitize the world’s population to the rights of these citizens.

The CRPD, the first international UN human rights treaty adopted in the 21st century, was negotiated by states from 2002 to 2006, with the participation of NGOs, national human rights institutions, and inter-governmental organizations. The General Assembly adopted it on December 13, 2006, during its 61st session and subsequently opened the effort for signature by all states and by regional integration organizations at UN Headquarters in New York on March 30, 2007. Eighty-one states and the European Union became treaty signatories at the opening ceremony. That total was and remains the highest number of initial acceptances of a UN Convention of any sort on its first day in history.⁵ Since its entry into force in May of 2008 for signatory states, CRPD has become a universal standard for human rights of disabled individuals. The Convention replaced previous disability-related instruments for its 158 signatory states.⁶ The CRPD identified the rights of disabled individuals as well as the obligations of state parties to promote, protect, and ensure those entitlements. Through its Optional Protocol, the Convention also allowed for inquiry by the Committee on the Rights of Persons With Disabilities into grave or systematic violations of its provisions in specific states.⁷ The CRPD reaffirmed rights previously scattered across other human rights treaties with the primary aim of ensuring that disabled individuals enjoy the “right to have rights” (Megret, 2008, p. 500).

Brazil signed the CRPD and its Protocol in March of 2007, affirming its intention to ratify both. Formal adoption occurred in July 2008 when the nation accorded the Convention the status of a Constitutional norm. Legislative support for ratification was unanimous. This was so for many reasons, among them active advocacy among civil society organizations aimed at raising legislators’ awareness of the issue and its importance.⁸ For the disability NGOs, ratification of the Convention and its Optional Protocol meant a national commitment to the UN and other states. That stance spurred a nation-wide mobilization aimed at ensuring the rights guaranteed in the Convention, as one young disability rights activist commented to me.⁹ Two long-time disability rights activists whom I interviewed saw the CRPD as a “victory of the movement”¹⁰ and as the

hallmark of a long process of discussions, agreements, advances, and intense reflections that happened during 4 years . . . [that] was possible thanks to the experience accumulated in 23 years (1979-2002) by the national movement of struggle of people with disability.¹¹

In a similar vein, another disability organization leader commented in an interview that the Convention represented

a new form of observing the issue of social inclusion of people with disability, since historically there was an assistencialist approach to this population . . . [which] strengthened the disability movement, equipping it with legal arguments in demanding rights and participation.¹²

The assistencialist approach entailed tutelage of disabled and poor people, depriving them of developing their freedom to make decisions and to take responsibility. It created strong resistance among disabled and nondisabled activists alike. The CRPD also encouraged dialogue between public sector representatives and activist groups in assessing and replacing existing assistencialist logic in laws and other public pronouncements and searching for new possibilities.¹³ The Convention also encouraged a more comprehensive framing of disability rights as part of a push to define national human rights policies in Brazil, which the government has actively been developing and continually revising since 1996.

Brazil’s recent human rights policies acknowledge population diversity in an effort to promote equality. The third version of the country’s Human Rights National Plan contains guidelines that address multiple dimensions of diversity in Brazilian society (age, race, gender, impairment, sexual orientation, ethnicity, etc.), urging their recognition in constructing a more egalitarian society. Recognizing the diversity within the nation by promoting and protecting universal human rights constituted a significant first step. However, without changes to representative institutions necessary to represent women, poor, and minorities more effectively, their political roles have remained limited. These changes lie outside the scope of specific human rights policies, but they need to be addressed for successful implementation of such initiatives. It is worth recalling in establishing appropriate expectations that the human rights agenda “is not a comprehensive political program. It does not supply answers to many important political questions; rather, it leaves them to the democratic political process” (Goodhart, 2005, p. 165).

Scholars have also directed attention to several major challenges to CRPD implementation. The lack of meaningful enforcement mechanisms in the pact has left execution up to each country. Therefore realization of Convention aims is subject to the vagaries of each participating nation’s politics (Mercer & MacDonald, 2007). Beyond issues of political commitment, governments require appropriate and sufficient internal capacity to devise and implement human rights policies. Typically too, nations need a strong disability rights movement to prod political leaders persistently to take action. Stein (2007) has argued that effective monitoring of human rights treaties depends on a number of factors including moral persuasion, political pressure, and NGOs’ ability to increase the general public’s awareness of pertinent issues. One long-time disability activist acknowledged the need for organized and well-articulated political pressure in an interview with me: “I think we are starting to form ourselves as a pressure group. We are not yet a pressure group able to put sufficient pressure to attain public policy change.”¹⁴

As Lang (2009) has also observed, many developing countries (including Brazil) lack reliable and robust statistics concerning their disabled populations, which shapes the governments’ ability to plan and implement relevant services effectively. In the long term, Lang has suggested this situation could potentially result in “an inherent democratic deficit in upholding disability rights,” because accessing basic services is indispensable for exercising other rights, and reliable data and indicators to measure progress are lacking. In Lang’s (2009) view, the complexities of social policies suggest the need for policy-makers to create effective inter-sectoral networks, which include policy-makers and civil society organizations, to work together on policy formulation and implementation, recognizing that the public sector alone cannot tackle such challenges successfully.

Having discussed the significance of the Convention for Brazil’s disabled population and major challenges to its implementation, I turn next to an examination of Brazil’s disability rights movement. In particular, I examine key strategies that NGOs have adopted to advocate for the rights of the nation’s disabled citizens, highlighting potential limitations of their efforts to advance claims on behalf of that population.

The Disability Rights Movement and Organizations In Brazil

Brazil has been slow in addressing the issue of disability rights, when compared with many European countries (Araújo, 2001). The first organizations created and administered by disabled citizens began to emerge in Brazil in the mid-20th century (Lanna, 2010). Initially, their motivation was securing solidarity among those with various impairments for mutual support and survival. These NGOs did not have political aspirations, headquarters, by-laws, or other formal structural elements, but the convivial experiences they helped create nonetheless framed many important debates about common issues and challenges confronting the populations they served (Lanna, 2010).

A broad political mobilization of disabled Brazilians first occurred in 1979, and by 1984 the nation’s disabled population had developed its own organized movement (Lanna, 2010). The fact that the UN declared 1981 the “International Year of People with Disabilities” helped to bring national visibility to the issue. The First National Assembly of the Entities of Persons With Disabilities took place in Brasilia in 1980 with the purpose of creating a single federation among existing groups. As matters evolved, the conference organizers were vitally concerned with ensuring the participation of disabled activists, resulting in the exclusion of nondisabled individuals from decision-making processes and from the planned federation (Lanna, 2010). This step urged the movement to distinguish organizations of persons with disabilities from those for persons with disabilities, a dichotomy in disability NGOs that persists in Brazil today.

When efforts to create a single federation to represent disabled citizens did not succeed, various elements of the disability rights movement instead organized around forms of impairments (physical, intellectual, and sensorial), an organizing disposition still evident today.¹⁵ Moreover, as mentioned above, the disability rights movement has actively discouraged participation by individuals without impairments, preventing them from voting or otherwise engaging in campaign decision-making (Lanna, 2010). This institutional siloing and fragmentation have limited the collective power of disabled Brazilians in their political struggle (Lanna, 2010). The NGO leaders I interviewed believed the CRPD is a helpful tool in overcoming these historical divisions within the movement.

Social Movement Theory and the Disability Rights Movement

Although scholars from a number of academic disciplines have offered varied definitions of social movements, Richard Scotch (1989) has contended, “the disability rights movement [in the United States] meets most of their criteria of movements advocating social change” (p. 381). In Brazil, scholars of social movements have expressed little interest in the nation’s disability rights movement (Lanna, 2010). This section uses the social movements literature to frame the central elements and particularities of Brazil’s disability rights movement.

Della Porta and Diani (2006) have conceptualized social movements as “a distinct social process, consisting of mechanisms through which actors engaged in collective action” (p. 20). The authors argue that conflictual relations, informal networks, and collective identity comprise three key elements of the social movements processes. In this formulation, social movement actors are engaged in conflictual collective action with a goal of promoting or opposing social change (Della Porta & Diani, 2006). Collective action concerning disability rights is inherently conflict-laden to the extent that the great majority of Brazil’s 45 million citizens with impairments are socially marginalized and dominated by the nondisabled majority, who routinely obstruct their ability to develop and exercise their capacities.

Informal networks play a crucial role in social movement processes, in which no single organized actor may claim legitimately to represent the entire movement (Della Porta & Diani, 2006). Throughout its history, Brazil’s disability rights movement has gradually moved from a more spontaneous to a more institutionalized and articulated structure. Dozens of local, regional, and national groups and organizations in Brazil seek to speak on behalf of at least some disabled people. These range from essentially social service organizations whose leaders are primarily nondisabled, to advocacy organizations led by disabled individuals. These groups have come together for specific campaigns and events, as for example, Movimento SuperAção annual marches or the Assino Inclusão campaign.¹⁶

Finally, the process of developing collective identity is the third constitutive element of social movements. As a result of identity building, organizational and individual actors involved in collective action regard themselves as elements of much larger processes of change (Della Porta & Diani, 2006). Advocates and theorists have struggled with conceptualizing disabled people as a group with a common identity (Shakespeare, 2006; Siebers, 2001).¹⁷ As Shakespeare (2006) has pointed out, just because an individual has an impairment, it does not mean he or she can offer insight into the lives and experiences of other disabled people, because impairments and experiences are so diverse. Even the efforts written into the CRPD to identify the attributes of this social assemblage excluded some people with impairments who should have been included (Kayess & French, 2008).

It is perhaps most useful simply to conceptualize disabled people as a collective without contending that they share a common identity. Drawing on Sartre, Young (1994) has used the concept of seriality to describe the relationship of individuals to race, class, gender, and other collective structures. Seriality is a passive, background unity, while groups are self-conscious social collectives (Young, 1994). In this view, impairments would serve as a series and imply the sort of passive unity to which Young pointed. Although their impairments certainly shape every disabled individual’s life, each such person’s identity is unique in Young’s view (1994). Groups have specific purposes around which individuals are united, which suggests that they will always be partial in relation to the series, because they can never encompass the totality of the conditions of even their participating individuals (Young, 1994). Thus, different disability rights groups may arise out of the impairment series, each with their particular purposes, but as Young suggests, they cannot encompass the totality of the condition of individuals with impairments. Young’s conceptual distinction between seriality and groups helps the analyst understand that common action cannot be expected from all disabled people just because they have impairments, and that to advance to the level of self-conscious organization in groups, individuals need to be reflective and mutually acknowledge one another as having shared purposes and experiences. Nonetheless, this argument suggests that it is important to conceptualize disabled people as a collective to maintain an alternative to liberal individualism (Young, 1994). Pressing for individual rights does not by itself address oppression as a structural institutional process, as Young has argued. It is also crucial for advancing disability rights to remember that disabled Brazilians are clearly not a homogeneous social collective: Multiple activist groups with various purposes and reflecting diverse individuals’ struggle to change the power relations in the society between disabled and nondisabled communities.

Social Movements and Democracy

As Della Porta (2013) has observed, social movements vary in their capacity and willingness to support and promote democracy, and specific conceptions of democracy are relevant to the success of democratization efforts, as they shape the role of civil society within such initiatives. Drawing on Baker, Della Porta has argued that a liberal conception of democracy has prevailed in Latin America during its recent democratic flowering and that orientation has reduced citizen participation. She explained that democratic consolidation focused on the elected elites and political parties that mediated the process of construction of democratic politics and thus excluded civil society. Brazil’s 1988 Constitution has at its foundation a formal conception of citizenship as fixed in individuals as autonomous holders of universal political and social rights. Similarly, at its heart, the CRPD embodies a liberal framework of rights too. This basic orientation has played a critical role in shaping the claims and actions pressed by disability NGOs in Brazil.

My examination of a sample of Brazilian disability NGO claims and discourses revealed broad adoption of liberal conceptions of citizenship. Building on the liberal values of the Brazilian Constitution and the CRPD, including freedom, equality, and autonomy, the nation’s disability NGOs have embraced liberal democratic discourses and practices that define full citizenship as strengthening the individual rights of disabled population to access education, employment, leisure, and many other social domains. These organizations appear to operate on the assumption that if disabled individuals’ rights are guaranteed and their responsibilities appropriately allocated, their full citizenship will be secured and equality and justice achieved across the broader population. This poses challenges for efforts to attain legal, political, and social equality and justice for those with severe or profound cognitive impairments, because the notion of liberal citizenship is predicated on the autonomy of the individual. As Dimopoulos (2010) has pointed out, intellectual disability is a complex social phenomenon, and social policies need to recognize this complexity beyond a simple affirmation that individuals with intellectual disability should enjoy the same human rights on an equal basis as everyone else. He argues for the adoption of the normative content of human dignity in the liberal legal frameworks, taking into account individual’s needs, wishes, potential, and limitations, to offer ways in which the person can be enabled to exercise her human rights to achieve greater freedom, which must be legally protected.

Favoring participatory and deliberative visions of democracy, Della Porta (2013) has argued that the citizen participation beyond voting is useful for both socialization to democratic values and a fundamental requirement for a just decisional process. Progressive social movements support an expansion not only of the channels of political participation but also of its diverse forms (Della Porta, 2013). Although all of the NGO leaders I interviewed agreed that active citizen participation is indispensable to promote social justice, the disability rights movement will continue to need to find modes of engagement that promise benefits to all citizens with impairments. As Scotch (1989) and Stroman (2003) have pointed out, only a small number of the millions of disabled Americans actively participate in the disability rights movement, which is also true for Brazil. However, these activists have exerted claims on behalf of all people with disabilities (Scotch, 1989). Advocacy is not only the domain of disability NGOs or individuals with impairments. Instead, effective activism implies social change and that complex set of processes can only be secured with time and successful framing of disability rights not as a special interest, but as an appropriate concern of all of Brazil’s citizens. The next section briefly describes Brazilian disability NGO advocacy strategies and suggests ways to reframe them to strengthen their participatory and deliberative characteristics.

Recasting Brazil’s Disability NGO Advocacy Strategies

Dimopoulos (2010) has pointed out that advocacy and self-advocacy are two essential ways in which people with impairments (and those with intellectual impairments in particular) advance their claim for support in liberal societies. Stroman (2003) has defined advocacy as “the process of doing something for or speaking in behalf of some person or cause” and self-advocacy as “speaking for oneself, making one’s needs known, and asserting one’s rights” (p. 46). Self-advocacy is generally viewed as a subset of advocacy and emerged later as a core tactic often compared favorably with advocacy on one’s behalf by others. Nonetheless, its relative use and utility vary by type of disability and the stigma attached to it, whether of intellectual or social impairment or both (Stroman, 2003). Advocacy as a central goal has accompanied the growth of the Brazilian disability rights movement, dating back to 1979 when the effort first emerged. In many cases, the movement began with self-advocacy, but it also has been carried out by others advocating on behalf of disabled people. As several interviewed leaders of disability NGOs noted in interviews with me, it is costly to get involved in advocacy and maintain a full-time staff dedicated to the activity. This difficulty encourages disability NGOs to form networks and alliances to monitor public policies and legislation to ease the burden of any single organization bearing significant monitoring and evaluation costs.

Besides the challenging task of monitoring policies and legislation, no single organization is likely alone to be able to change the public’s perceptions of disabled citizens. As Schneider and Ingram (1993) have argued, the social construction of target populations is an important factor to consider because those frames influence the policy agenda and the selection of policy tools used to address an issue, as well as how political choices are legitimated. They observed that, “Policy is likely to serve democratic roles [for those who] are the powerful, [and] positively constructed. Until all groups are so situated, policy will continue to fail in its democratic mission” (p. 345). This challenge underscores how complex the concept of advocacy is and suggests how many societal actors are involved in influencing it.

Stroman (2003) has distinguished among five dimensions of advocacy, and these involve more than formally engaged disability NGOs. First, there are informal-natural advocates—family members and friends, speaking out for their loved ones. This is how many of the Associations of Parents and Friends began, such as the Brazilian Association of Parents and Friends of the Deaf and Blind and People with Multiple Sensorial Disabilities, Association of Friends of the Autistic, Association of Parents, Friends, and People with Disabilities of Employees of Banco do Brasil, Association of Parents and Friends of the Exceptional, and many others. The mobilization of like-minded advocates facing similar challenges has often resulted in the formation of formal organizations and is discussed below.

Self-advocacy, a second kind of activism, results when people speak out for themselves (Stroman, 2003). The Brazilian Association of the Deaf and Blind, formed by deaf and blind adult citizens, is a good example of a self-advocating organization. Also, the network of Centers for Independent Living represents an example of disabled individuals advocating for themselves.

Third, nonprofit, government or for-profit organizations do use professional advocates who press for the rights and needs of the disabled people they serve. This happens in practice often when a government agency hires an NGO to provide expertise concerning specific initiatives the public organization must carry out. An example of this is a program of inclusive education for which NGOs have been hired to advise the Municipal Secretariats of Education on key considerations in continuing teaher education and training of school administrators as a part of a larger strategy to make public schools more accessible to children with disabilities.

Fourth, some civil and human rights organizations’ primary mission is to advocate on behalf of disabled people. The central focus of these organizations is to transform social problems into public issues and to campaign around those concerns to influence public policy or private behavior at the local, national, or transnational levels (Lavalle, Acharya, & Houtzager, 2005). Organizations such as Conectas Direitos Humanos and Brazil Human Rights Fund, among others, are examples of this organizational type.

Finally, the government has created a fifth form of advocacy, which Stroman (2003) has defined as paid public employees, “who have responsibility of framing legislation and regulations on behalf of persons with disabilities as well as looking at the integrity of implementation of legislation” (p. 49). This group includes not only legislators but also public employees of municipal, state, and federal agencies and councils that promote the rights of disabled people, such as the Municipal and State Councils of Persons with Disabilities (Conselho Municipal/Estadual de Pessoa com Deficiência), the National Secretariat of Human Rights (Secretaria Nacional de Direitos Humanos), and the National Secretariat for the Promotion of Rights of People with Disabilities (Secretaria Nacional de Promoção dos Direitos da Pessoa com Deficiência).

It appears to make strong analytic sense to broaden this paid professional advocacy category to include private as well as public organizations and associations, publishing and media, such as Conselho Nacional dos Direitos da Pessoa com Deficiência (CONADE), AMPID, Ordem dos Advogados do Brasil (OAB), Revista Sentidos, and Rede Saci. CONADE—National Council on the Rights of People with Disabilities—is composed of governmental and nongovernmental organs, associations, and federations seeking to promote the rights of people with disabilities. AMPID—National Association of Public Ministry on the Defense of Rights of People with Disabilities and the Elderly—is a nonprofit organization, with a national scope, bringing together independent public prosecutors.¹⁸ OAB——a professional national entity of attorneys—promotes the rights of disabled people as well as changes in social constructions of citizenship and justice so as to allow improved integration of disabled individuals into community life (Lôbo, 2002). Revista Sentidos is a printed and electronic magazine and a portal with information concerning social inclusion of people with disabilities. The magazine has been published for many years and routinely provides information on the legal and human rights of disabled people. These are often communicated by means of memorable stories involving disabled individuals. Rede Saci—Saci Network—disseminates information on disabilities to stimulate social and digital inclusion of the population and thereby improve the quality of life and allow the fuller realization of citizenship for people with disabilities. Media organizations, whether they publish electronic or print products, can be powerful advocates by means of how they frame issues of justice and the rights of people with disabilities.

Stroman’s description of advocacy types helps identify and explore additional strategies that the Brazilian disability rights movement might use to educate and sensitize society in general, in addition to leaders of public- and private-sector organizations, of the population’s needs and possibilities. As an identity-based movement, disability rights advocacy seeks human emancipation. That is, these organizations and entities seek to free the social identity of disabled people from its current status as stigmatized and oppressed (Drake, 2010). Put differently, as the disability rights movement has grown, its political objectives have shifted from social redistribution to social recognition (Drake, 2010), an important paradigm change. However, Charles Taylor (1992) has argued that notions of empowerment and social recognition should be conceived in terms that go beyond mere self-fulfillment. Indeed, if the culture of self-fulfillment were to become widely established among Brazil’s disabled citizens, particularly the youth, it might weaken the disability rights movement and especially self-advocacy in Brazil because it would limit democratic dialogue. Taylor (1992) has warned that robust development of a culture of self-fulfillment provides individuals an incentive not to concern themselves with anything that transcends them (p. 15). Should such become the mantra guiding Brazilian disability rights advocacy, disabled citizens might become primarily concerned with enhancing their own well-being and therefore not engage in political life except as such involvement resulted in personally specific benefits. Taylor has argued that such a narrow participatory political life would prevent people from developing a shared horizon of significance, which will ultimately limit dialogue in society and by extension, degrade democratic politics and its possibility. To this argument, Michael Sandel (1996) has added that for the meaningful exercise of citizenship, citizens should seek appropriate political forms and social conditions, which in this context must build on broader dialogue and deliberation.

If disability NGOs succeed in recasting their advocacy strategies from their current more limited (siloed) and divisive efforts to more inclusive and comprehensive ones, which many of them are actively seeking to do, the implications for democratic politics and policy-making in Brazil would be beneficial in at least two ways. First, by mobilizing and collaborating with a wider set of actors in society, NGOs would increase avenues for dialogue and deliberation across presently existing divides. David Held’s (1996) notion of “interdependent transformation of both state and civil society,” which he calls “double democratization,” is helpful in understanding the possibilities for democratic change (p. 318). Held has argued that democracy should be conceived as a double-sided phenomenon, concerned with the reformation of state power and restructuring of civil society, which will require rethinking both the limits of state action and the forms and reach of civil society: how state policy can be made more accountable, and how nonstate activities can be democratically reordered. This idea applies to Brazil’s disability NGOs as they engage in broader dialogue on human rights and democracy as it implies changes within civil society organizations and the strategies they embrace and government policies alike.

Second, widening dialogue and deliberation will help those whose causes are advocated to reflect on how political equality and democratic life link to greater economic and social equality, a concern that Held (1996) raised many years ago. Examining young democracies, Arat (1991) has observed that civil and political rights could not be guaranteed when socioeconomic rights were undermined. To buttress her claim, she has argued that the stability of liberal democracy depends on the extent of balance between the two groups of human rights and has warned that when this balance is violated and socioeconomic rights are ignored, young democracies risk sliding into authoritarianism. Arat’s argument augments understanding of the environment in which disability rights advocates operate while attempting to articulate rights claims.

With these two positive outcomes of broadened advocacy strategies in mind, disability NGOs should be careful not to frame policy as a technical issue; otherwise, decision-making could come to be dominated by perceived subject-matter experts. In Held’s (1996) conception of democracy, engagement of the least powerful is crucial. Policy-makers and disability rights advocates can help to bring Held’s vision to fruition by taking steps to eliminate structural inequality in a more transparent and participatory way.

In sum, advocacy is not only the domain of disability NGOs or disabled individuals themselves. Instead, effective advocacy implies social change and that process, or complex set of processes can only be secured with time and framing disability rights not as a special interest, but as an appropriate concern of all of Brazil’s citizens. Stroman’s account of advocacy highlights both the interdependence of many actors in society whose cooperation is indispensible to achieve social change, and the needed scope of advocacy efforts, from changing negative perceptions and attitudes toward impairment(s) to helping to empower disabled citizens to participate more meaningfully in most life activities. So conceived and implemented, disability rights advocacy efforts could indeed promote a stronger democracy in Brazil.

Conclusion

The CRPD represented a historic landmark in the long struggle for disability rights internationally. As the first legally binding international instrument concerning disabled individuals, the Convention helped an already growing social movement formalize and legitimate its aims, and it put disability rights and justice on many national agendas for the first time. However, supporters have also identified a series of ongoing challenges to CRPD implementation, and thus, its potential to secure the human rights of disabled people in the future should not be overestimated. As Lang (2009) has warned, “[It] should not be seen as a panacea that will end discriminatory policies and practices” (p. 267).

Brazil’s disability NGOs continue to pursue diverse strategies as they promote social inclusion and the rights of the nation’s disabled population. Although all of their efforts and projects are well-intended and focused on securing equal rights, dignity, and respect for the disabled population they serve, in practice, the efficacy of these organizations is limited by the operating liberal values and frameworks present in Brazilian society. Disability NGOs consider active citizen participation of people with impairments crucial for advancing disability rights and justice, but it should be noted that the participation of these groups in politics is not their responsibility alone. Society at large has long posed attitudinal, communication-related, and other barriers that have prevented their participation in political, social, and cultural life. Therefore, addressing the long-standing exclusion of people with impairments in society and the prevailing public attitudes that underpin their exclusion is too challenging a task to be left to the individuals or groups with impairments or the disability NGOs alone.

To improve the effectiveness of promoting disability rights, Brazilian disability NGOs need to engage in a broader dialogue and deliberation by collaborating with a wider set of actors in society. This implies that social change can only be secured with time and with a social framing of disability rights not as a special interest but as a broader interest of the entire society. Stroman’s helpful analysis of advocacy underscores the interdependence and cooperation between many actors in society necessary to achieve sustained social change. Disability rights advocacy efforts can indeed help promote a stronger democracy in Brazil when their efforts are conceived and implemented in such terms.

Footnotes

Acknowledgements

I am grateful to Dr. Max Stephenson Jr., Virginia Tech Institute for Policy and Governance, for the encouragement and comments he provided on several drafts of this effort.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Notes

Author Biography

Lyusyena Kirakosyan currently serves as an affiliated research faculty with the Virginia Tech Institute for Policy and Governance (VTIPG). In 2013, she earned her PhD from Virginia Tech and received an Outstanding Dissertation Award for her dissertation titled Democratic Justice for Brazilians with Impairments.

References

Arat

Z. F.

(1991). Democracy and human rights in developing countries. Boulder, CO: Lynne Rienner.

Araújo

L. A.

(2001). A proteção constitucional das pessoas portadoras de deficiência [The constitutional protection of persons with disability] (3rd ed.). Brasilia, Brazil: CORDE - Coordenadoria Nacional para a Integração da Pessoa Portadora de Deficiência [National Coordination for the Integration of Persons with Disabilities]. Retrieved from www.mp.rs.gov.br/dirhum/doutrina/id248.htm

Della Porta

(2013). Can democracy be saved: Participation, deliberation and social movements. Available from http://www.eblib.com

Della Porta

Diani

(2006). Social movements: An introduction (2nd ed.). Oxford, UK: Blackwell.

Dimopoulos

(2010). Issues in human rights protection of intellectually disabled persons. Surrey, UK: Ashgate.

Drake

M. S.

(2010). Political sociology for a globalizing world. Cambridge, UK: Polity.

Goodhart

(2005). Democracy as human rights: Freedom and equality in the age of globalization. New York, NY: Routledge.

Held

(1996). Models of democracy (2nd ed.). Stanford, CA: Stanford University Press.

Kayess

French

(2008). Out of darkness into light? Introducing the Convention on the Rights of Persons With Disabilities. Human Rights Law Review, 8, 1-34. doi:10.1093/hrlr/ngm044

10.

Lang

(2009). The United Nations Convention on the right and dignities for persons with disability: A panacea for ending disability discrimination? European Journal of Disability Research, 3, 266-285.

11.

Lanna

M. C. M.

Jr. (2010). História do movimento político das pessoas com deficiência no Brasil [The history of the political movement of persons with disabilities in Brazil]. Brasília, Brazil: Secretaria de Direitos Humanos, Secretaria Nacional de Promoção dos Direitos da Pessoa com Deficiência [Secretariat of Human Rights, National Secretariat for Promotion of the Rights of Persons with Disabilities].

12.

Lavalle

A. G.

Acharya

Houtzager

P. P.

(2005). Beyond comparative anecdotalism: Lessons on civil society and participation from Sao Paulo, Brazil. World Development, 33, 951-964. doi:10.1016/j.worlddev.2004.09.022

13.

Lôbo

P. L. N.

(2002). Comentários ao Estatuto da Advocacia e da OAB [Commentary to the Statute of Attorneys and of the Brazilian Bar Association] (3rd Rev. ed.). São Paulo, Brazil: Saraiva.

14.

Megret

(2008). The Disabilities Convention: Human rights of persons with disabilities or disability rights? Human Rights Quarterly, 30, 494-516.

15.

Mercer

MacDonald

(2007). Disability and human rights. The Lancet, 370, 548-549. doi:10.1016/S0140-6736(07)61272-0

16.

Michalko

(2002). The difference that disability makes. Philadelphia, PA: Temple University Press.

17.

Oliveira

I. R.

(2001). Citizenship and human rights in Brazil. In Hillman

R. S.

Peeler

J. A.

Silva

E. S.

(Eds.), Democracy and human rights in Latin America (pp. 55-73). Westport, CT: Praeger.

18.

Reinders

H. S.

(2000). The future of the disabled in liberal society: An ethical analysis. Notre Dame, IN: University of Notre Dame Press.

19.

Sandel

M. J.

(1996). Democracy’s discontent. Cambridge, MA: Belknap Press of Harvard University Press.

20.

Schneider

Ingram

(1993). Social construction of target populations: Implications for politics and policy. American Political Science Review, 87, 334-347.

21.

Scotch

R. K.

(1989). Politics and policy in the history of the disability rights movement. The Milbank Quarterly, 67(Suppl. 2, Pt. 2), 380-400.

22.

Shakespeare

(2006). Disability rights and wrongs. London, England: Routledge.

23.

Siebers

(2001). Disability in theory: From social constructionism to the new realism of the body. American Literary History, 13, 737-754. Retrieved from https://www-jstor-org.web.bisu.edu.cn/stable/3054594

24.

Stein

(2007). Disability human rights. California Law Review, 95, 75-121.

25.

Stroman

D. F.

(2003). The disability rights movement: From de-institutionalization to self-determination. Lanham, MD: University Press of America.

26.

Taylor

(1992). The ethics of authenticity. Cambridge, MA: Harvard University Press.

27.

Young

I. M.

(1994). Gender as seriality: Thinking about women as a social collective. Signs, 19, 713-738. Retrieved from https://www-jstor-org.web.bisu.edu.cn/stable/3174775