From a young age I was surrounded by questions of development and underdevelopment, of capabilities and disabilities. Growing up and visiting family in places such as Caracas, Belgrade, Geneva, and Kuwait, it became clear to me that my experience of living with a disability was radically different as I moved with or visited family from place to place. In these new lands I recall wondering, “Are there other persons with disabilities here like me? What are their experiences, hopes, and dreams? What do they do and what can they become?” By the time I started my undergraduate degree at the University of California Berkeley, I had a powerful realization; my environment shaped what I could do to a far greater extent than my particular impairment. As an adult, I began asking questions about laws, governance, and accountability. Why did some countries excel at providing quality services, while others struggled?
These are fundamentally questions of spatial and social justice and development, and this chapter critically explores these core concepts as well as theories surrounding equity, access, and urban development. I do so by first exploring the ways that the dominant approaches to social justice and development are understood in planning theory and how unjust approaches to planning have negatively impacted the lived experience of persons with disabilities. Second, I explore and expand on the participatory institutions of Peter Evans, the Capability Approach (CA) of Amartya Sen, and the Human Rights Model of Kozue Kay Nagata to illuminate how their work contributes to a disability-inclusive development framework. This framework is then explored in more detail in Chap. 3. With this background, we begin to see the most common pitfalls in conceptualizing, formulating, and effectively implementing disability-responsive development policies. Again, these are policies that are aimed not just for some but for everyone.
Spatial and Social Justice Theories
Progressive ideas of justice have emerged over the past 40 years to challenge new forms of exclusion,Footnote 1 to provide metrics for assessing fairness, and to empower marginalized groups in asymmetric power relationships. Research by Crocker and Robeyns (2010), Fleurbaey and Maniquet (1999), Harvey (1978), Lefebvre (1991, 1974), Mitra (2018a, b), and Vizard (2006), among others, inform my understanding of human development, economics, geography, and applied disability studies. The term “spatial justice” is used to link together social justice and the organization and utilization of physical space, most notably in the works of geographers David Harvey and Edward W. Soja. The organization of space is a crucial dimension of human society, reflecting social facts and influencing social relations (Henri Lefebvre 1968, 1972). Theorists like Rawls, Young, Sen, Soja, Harvey, Dikec, and others challenge dominant notions of justice, expanding our understanding into new realms. Their findings are of vital importance to persons with disabilities, an omnipresent but invisible sub-segment of every society or social group. However, few researchers have extended theories of justice to explore the conditions and experiences of persons with disabilities.Footnote 2 The following section highlights these theoretical gaps, noting that in the struggle to assert and redefine identity and social control, we must also assess the justice of contemporary systems toward developing an inclusive approach to effective disability rights policies.
The capacity and capability of the so-called weak to exercise their rights, agency, and personhood still stands as a key litmus test in the definition of and struggle for justice. New structures of governance promoted by contemporary development theorists also include the role of justice in balancing communal decision-making processes and debates. According to Sen (1999) and Evans (2002), such deliberations can calibrate new socially just values and usher in new approaches to public policy. In exploring the merits of what Robeyns (2008) calls a “capability approach to justice,” contemporary development and planning scholars may find innovative approaches to tackling long-lasting problems. The Capability Approach to justice explores the distribution of justice as a fundamental, participatory, and deliberative process wherein social values are developed and implemented by the people most affected. It is inclusive in both process and outcome and as such offers a path toward a theory of social justice that includes persons with disabilities.
Contemporary Social and Moral Values
In Social Justice and the City, David Harvey’s (1973) questions of social justice are initially approached as if social and/or moral philosophy are distinct fields from which absolute principles can be derived.Footnote 3 These ethical principles, once established, can then be used to evaluate events and activities in our contemporary world. Contemporary cities exist in a nexus where economic, technological, and social transformations simultaneously strengthen and erode equality and liberty. Cities are increasingly polarized; larger amounts of wealth, power, and privilege are increasingly being concentrated into the hands of a few, and the gap between the rich and poor keeps widening. Within this contemporary context, it becomes vital to reassess our priorities. What are the dominant contemporary social and moral values? What is the context from which planners and policymakers can make decisions effectively? How can such theories of social justice find practical approaches in policy design, planning, and implementation?
Theories of justice evolve and contemporary approaches incorporate the reality of the theorist’s time and place. Over the course of the past two decades, social justice theorists have proposed responses to the economic processes and transformations that were stimulated by competing and complementary forces of neoliberalism and globalization. For many theorists, these two forces are responsible for altering social relations and, in many instances, further marginalizing vulnerable groups. In virtually all parts of the world, persons with disabilities have a long history of neglect and oppression. They have been targets of some of history’s most gross human rights violations. A new global movement culminating in the development of a comprehensive international human rights treaty articulates a set of principles that would protect, promote, and ensure the basic dignities and freedoms of persons with disabilities. In what contemporary development and planning theorists have called a post-industrial globalized era, a new set of economic metrics and values trump tribal, communitarian, and/or other traditional social norms. Persons with disabilities are but one minority group that has been impacted by contemporary economic, social, and political transformations.
Social identities, inequalities, and exclusions are themes that have defined the early part of the twenty-first century. Progressive theorists of justice have sought to illuminate how the phenomenon of exclusion on the basis of gender, race, ethnicity, sexual orientation, or disability leads to injustice. These same theorists, however, have not clearly defined how the phenomenon of inclusion functions or can be sustained.
Contemporary Approaches to Social Justice
There exists no generally accepted concept or definition of justice, and descriptions of justice are often contradictory. The subject of justice is one of conflict and contest. Miller (1999) states that when talking about justice, we are talking about “how the good and bad things in life should be distributed among the members of a human society.” Capability theorists Pierik and Robeyns (2007) suggest Miller’s description of social justice is a viable definition on account of its simplicity and that such a simple definition could attract broader support. For example, a policy is described as unjust, Miller argues, when we claim that a person “enjoys fewer advantages than that person or group of persons ought to enjoy (or bears more of the burdens than they ought to bear), given how other members of the society in question are faring” (Miller 1999). Robeyns (2008) argues that theorists of justice primarily focus on the justice of social arrangements and institutions and that justice is often regarded as a matter of ethics rather than of political philosophy. However, Iris Young and other political philosophers disagree (Robeyns 2008), and instead suggest that the very definition of oppression centers on injustices that a group of people suffer from as a means to further empower their oppressor(s).
It is important to note that two dominant traditions exist in social justice literature. The terms “social justice” and “distributive justice” are generally used interchangeably. Harvey and others often use the term “justice” to cover both, but as Robeyns (2008) notes, this can be misleading, since there are debates related to justice that fall outside the scope of social justice. Retributive justice, spatial justice, and other work on procedural justice developed by Iris Marion Young (1990) fall outside this scope and hold promise for new and innovative (non-Marxist) notions of justice to address the challenges of inequality and social oppression.
Rawls’ Versus Young’s Theory of Justice
Rawls’ theory of justice stems from the egalitarian and social contract tradition. It investigates the basic structure of a just society. Rawls (1971) defines justice as “providing in the first instance a standard whereby the distributive aspects of the basic structure of society are to be assessed.” According to Rawls (1971, 1999), each person is to have an equal right to the most extensive system of equal basic liberties compatible with a similar system of liberty for all. Robeyns (2008) suggests that for Rawls, the basic structure of society is a combination of political and social institutions, a cooperative system that allows assignment of basic rights and duties that in turn regulate advantages from this same system. Within this framework, an examination of the basic societal structure allows us to accommodate issues of equality and freedom. Social structures, including laws, may constrain our choices and categorize our functions within a limited framework of mutual advantage.
Rawls believes that social and economic inequalities are to be arranged in a way that benefits the least advantaged members of society. Termed the “difference principle,” this arrangement is supposed to apply to a set of basic liberties and social primary goods. Rawls (1999) outlines a set of social primary goods that are necessary to enjoy these liberties, which include (1) basic rights and liberties, (2) freedom of movement and choice of occupation, (3) powers and prerogatives of offices and positions of authority and responsibility, (4) income and wealth, and (5) the social bases of self-respect (ibid. 386). Ultimately, the distribution of these basic liberties and social primary goods has been unfair to persons with disabilities. Rawls relies on social primary goods as the main metric for interpersonal comparisons for the purpose of justice.
However, theorists like Young (1990) challenge the reliance on social primary goods as a metric. Young argues that structural oppression is the fundamental source of injustice, and she is one of the few theorists who mention people with disabilities as a class who frequently endure both injustice and oppression. She suggests that we can learn much about social justice by exploring structural inequality, normalization, and stigmatization. She argues that the historical and contemporary experience of disability is paradigmatic of structural injustice. According to Young, agents, whether individual or collective, have the right to sole authority over their actions only if the actions and their consequences (1) do not harm others, (2) do not inhibit the ability of individuals to develop and exercise their capacities within the limits of mutual respect and cooperation, and (3) do not determine the conditions under which other agents are compelled to act. These three points help us assess the physical and social burdens that limit the choice, voice, and agency of persons with disabilities.
Young expands the meaning of social justice from the morally proper distribution of benefits and burdens in society to the means of living, being, and doing. This helps to couch the forms of social oppression into relative forms of social organizations or social processes. Justice becomes procedural as well as redistributive. Young suggests that institutional oppression, often the result of procedures and practices that perpetuate inequality, can bring about injustice. An examination of the means and outcomes of oppressive or unjust practices is thus necessary to create a framework for internal and external analysis, as such procedures create processes that perpetuate norms and marginalize difference. Understanding the nature of these institutional processes is key to addressing disability and the many forms of social exclusion.
Sen, Rawls, and Young on Justice
One problem with contemporary theories of justice is that they are often based on “strong assumptions” that may introduce bias or exclude certain groups of people from the theory. For example, it has been argued that Rawls’ theory is unable to account for our duties of justice toward the severely disabled (Sen 1980; Kittay 1999; Nussbaum 2006; Kittay and Carlson 2010). Critics have challenged the notion of constituting personhood and the inability to extend justice and rights to those who cannot care for themselves or whose cognitive capacities limit their ability to make conscious decisions and be in active control of their life. Amartya Sen, in his 1979 Tanner Lecture, formulated the first critique against Rawls in this area. Sen claimed that neither justice as fairness nor the difference principle would give any redistribution to a disabled person on the grounds of one’s disability.
Rawls turned to the social contract tradition, where justice is understood as the outcome of mutual advantage—that rules of justice are more beneficial for everyone than if each individual were to pursue her own advantage on her own. However, this presents several problematic areas for people living with disabilities and highlights the importance of the interaction between the individual and their environment. A functional limitation for Rawls is a fundamental property of the individual, a failure that was not addressed by his theory of justice. Egalitarian theories of justice are similarly unable to account for socio-cultural oppression or discrimination. They fail to offer possible improvements or actions that take us to a less oppressive and more just society (Sen 2006; Pierik and Robeyns 2007).
In direct contrast, Young positions functional limitations as a procedural failure of justice, one that inadequately incorporates bodily differences. Young then offers a framework from which to operationalize resistance against five faces of oppression: exploitation, marginalization, powerlessness, cultural imperialism, and violence (Young 1990). These five faces of oppression help set the framework for political actions and policy-based research.
Capabilities, Human Rights, and the Lived Experience of Disability
Applying contemporary theories of justice to dynamic and interdependent urban systems poses a myriad of complications. Urban infrastructure and mobility concerns are brought to the forefront as the privatization of public space and the creation of closed networks reorganize value creation and benefit distribution to those whose connections matter. Reforming or regulating the volatility of competitive free markets does not solve the inherent dimension of perpetuating inequality that is built into the market system.Footnote 4 Such inequalities and forms of exclusion and oppression can be conceived under the framework of Amartya Sen as “capability deprivation.” What types of approaches could mitigate capability deprivation? What types of arrangements could increase the capacity of local communities and governments to identify and redress capability deprivations? How are capability deprivations linked to human rights and how are these linked to the lived experience of persons with disabilities? In relationship to Sen’s groundbreaking work, development scholars such as Evans, Mitra, and Nagata offer some answers.
The Capability Approach to Justice and Freedom
Sen’s (2000) basic proposition is that we should evaluate development in terms of “the expansion of the capabilities of people to lead the kind of lives they value—and have reason to value.” The expansion of people’s capabilities depends upon both the elimination of oppression and the distribution of some of the basic tenets of development: the provision of basic education, healthcare, and social safety nets.Footnote 5 The Capability Approach as described by Sen offers no concrete steps or list of capabilities that could guide policymakers to assess if progress can be made. It was meant to help inform a new theory of justice that can go beyond debates of resource distribution and approach functional capability (Fleurbaey 2002, 2006). Fleurbaey (2006) suggests expanding and redefining capabilities into refined functioning, which could allow for more measurable indicators to be developed in order to gauge effective social inclusion, active participation, and sustainable change.
Functioning is considered to be the actual achievement of the individual (being and doing). Sen’s Capability Approach reveals the limitations of an overemphasis on income and wealth when people’s capabilities (i.e., opportunities) and functionings (i.e., activities) are unattended. Sen’s Capability Approach places an emphasis on sets and bundles of functionings from which a person is able to freely choose between various alternatives at their disposal. Mitra (2006) expands Sen’s Capability Approach to touch on the various ways in which disability can be defined conceptually. The CA highlights two nuances related to issues in disability: deprivation of capabilities and deprivation of functionings. These two concepts run parallel to our basic freedoms and basic functionings that, respectively, seek to address these types of deprivations.
Mitra (2006) additionally underscores the importance of the evaluative dimensions of disability. She notes Sen’s reluctance to propose a list of capabilities and functionings to assess poverty and disability-related issues. This open-ended question of assessment is thus left to stakeholders to define. So, although people with impairments and disability ought to be involved in selection of criterion of assessment in a participatory fashion, their role remains unclear. She also questions the role of policy in addressing issues in capabilities or functionings, though concludes that needs and points of focus are value-based and vary according to those who are able to define these needs and focuses. These questions and concerns are addressed by the Capability Model of Disability (CMD) (see Chap. 3).
Mitra (2018a) elaborates on the CA as a framework for evaluation of disability and civil rights. She argues for a CA-based conceptualization and operationalization for data collection to advance analysis and insight on issues facing people with disabilities. Her two-layered disability data collection system involves data on deprivations with respect to differential outcomes and opportunities relative to able-bodied people, as well as a stepwise measure of disability (motivated by the CA). The first data layer is used to create comparative assessments of the lives of people with disabilities as a baseline for policy. The second consists of data collection specific to disability (such as emphasis on potential disability and deprivations). However, Mitra does not expand on these indicators of deprivation. Instead they are to be defined and informed by the lived experiences of people with disabilities to identify issues and increase their participatory capacities. This allows for more effective disability-related policy.
Trani et al. (2011) analyze how the CA informs gaps in disability-related research, especially with respect to data collection, policy implementation, and assessment. The authors propose a new measure of both functionings and capabilities by analyzing the gap between the two. They consider the CA’s insight on conversion factors such as the ability to internally and externally convert endowments, income, and other social resources into tangible functionings and personal aspirations. Given these new insights elucidated by the CA, data collection and analysis of policy must accommodate nuances with respect to disability. The authors claim that “data collection has to be based on the CA framework from the outset and needs to include values and requirements expressed by community members.” In addition, the operationalization of the CA “requires other information, along with identification of resources and constraints, the measurement of the level of availability of commodities, as well as of achieved functionings: measurement of valued capabilities, agency and choice of individuals and communities.” Notably, the authors hint at the improvement of measurement of disability and its relevance for policy, but whose stakeholders’ agency (i.e., people with disabilities) has yet to be acknowledged by those in power. This phenomenon is called negation, in which people with disabilities have little to no choice with respect to outcomes that they choose to desire in social life. Thus, these sources provide excellent insight into how a disability-responsive development framework would look. The analysis of these scholars is thus limited by a lack of discussion on the barriers to political participation and effective implementation.
Laws codify human rights principles and thus expand the processes by which capabilities are distributed. This legal aspect is important because human rights inform processes of ethical recognition that shape public policy. These processes further impact expectations and choices toward public action (Vizard et al. 2011; 10). Vizard et al. (2011) draw on Sengupta’s Right to Development model to address application to the expansion of substantive freedoms via internationally recognized human rights standards, but nonetheless fail to address the specific method for evaluation. The lack of specificity on how these standards will be reached and who will pay for them is endemic in the global discussion on human rights.
Díaz Ruiz et al. (2015) propose an integration of the CA to assessment of public policies and individual choice. Their study investigates a specific Chilean disability-related policy and its failure to address important constructs identified by Sen that concern people with disabilities. They find that the failure lies in a misalignment with domestic and international laws as well as a lack of connection with concepts such as agency and freedom. The authors also provide an excellent basis for the definitions contained within the CA and its importance for disability policy. The authors maintain that the Capability Approach
takes into account the choices available to an individual. It emphasizes not only what a person is or does, their “functionings,” but also the range of capabilities which they can choose from, that is the “set of capabilities” that a person can freely act upon. This perspective captures a person’s relationship with their surrounding environment, as well as the available societal opportunities. Due to its comprehensiveness, the CA is believed to complement and exceed other disability models (Trani et al. 2009), which made it crucial to this analysis. (5)
In addition, they draw on Sen’s conceptual apparatus of “advantage,” which consists of the following: achievement of well-being, achievement of agency (being and doing), freedom of well-being (achievement), and agency of freedom (real opportunities). The authors conclude that in order to address issues and barriers to the agency of people with disabilities, “the policy requires redesign, scheduled implementation, and furthermore, the political will to position this issue on the policy agenda and advance it in the realm of social protection” (17). One of the telling questions that remain is—how are these rights to be evaluated?
In the following sections I address these shortcomings and develop a nuanced view toward the division of individual, social, and collective responsibility. These approaches require new theoretical and governance frameworks. The right reforms foster new debates and establish procedures that ensure no one is left behind.
Development Through Participation
Public participation unlocks new capabilities in individuals and in groups, and helps otherwise marginalized individuals address their respective deprivations by influencing the processes of governance and resource distribution. As such, corrective measures that increase social opportunities of education and healthcare can complement individual opportunities of economic and political participation (Sen 1999). Sen states, “If the point of departure of the approach lies in the identification of freedom as the main object of development, the reach of the policy analysis lies in establishing the empirical linkages that make the viewpoint of freedom coherent and cogent as the guiding perspective of the process of development” (Sen 2000, xii). As such, a woman with disability’s social position is not inherently influenced by her impairment, but rather by her economic opportunities, political liberties, social powers, and the enabling conditions of good health, basic education, and the encouragement and cultivation of her initiatives.
Evans argues that local knowledge and local deliberations are the core of development and the engine of institutional change. He stresses that the wholesale importing of public policy produces dependency by diminishing the capacity of that society to exercise social choice and “build better institutions” (Evans 2004, 36).Footnote 6 Evans posits that a state’s cycle of dependency can be broken by investing in the participatory capabilities of marginalized groups. Thus, instead of fully relying on foreign experts to solve domestic problems, a state could invest in developing culturally responsive participatory institutions. Such institutions would elicit and aggregate local knowledge and, in doing so, build the basic capabilities necessary to innovate and realize sustainable solutions (Rodrik 2000; Evans 2004, 36; Pineda 2010).
In this book, urban development is understood as being inclusive if it includes a diverse set of stakeholders in an open process of decision-making. Open decision-making is a fundamental aspect of access, equity, and inclusion. Public sector institutions in Dubai and in most of the world develop plans for public deliberation and exchange of ideas. Amartya Sen sees participation in public deliberations as offering the only way to adequately define desirable developmental goals. As he explains, “Processes of participation have to be understood as constitutive parts of the ends of development in themselves…An open and public search for agreement or a consensus can be extremely messy and many technocrats are sufficiently disgusted by its messiness to pine for some wonderful formula that would simply give us ready-made weights that are just right” (1999, 291). However, Sen remains firm in his belief that technocratic shortcuts must be rejected because consensus draws from valuation and judgment, which cannot be fully automated by technology.
In his paper Development as Institutional Change: The Pitfalls of Monocropping and the Potentials of Deliberation, Evans (2004) builds upon Sen’s and Rodrik’s work, moving the conversation toward exploring the ways participatory political institutions can be implemented in practice and what the impact of a more deliberative process of implementation can be. This approach raises a host of interesting theoretical issues. Evans notes that the developmental consequences of participatory institutions are not well understood, especially at bigger levels, beyond that of a specific community or a project. In fact, he suggests that the most interesting contemporary development efforts are those that attempt to build public discussion and exchange directly into processes of governance. Evans suggests that embedding participation into institutional structures could be called “deliberative democracy,” which he defines as a process of “joint planning, problem-solving and strategizing” involving ordinary citizens, in which “strategies and solutions will be articulated and forged through deliberation and planning with other participants.” This way, “participants will often form or transform their preferences in the light of that undertaking,” allowing solutions that would have been obscured or undesirable given initial preferences (Fung 2003, 2004; Evans 2004, 37). If a robust deliberative process could be effective in large enough political units, it would impact developmental trajectories—say, the provincial, municipal, or regional levels—it could be called “deliberative development” (Evans 2004, p. 37). Evans suggests that institutional analysis must consider the manner in which marginalized groups can make claims and contributions to “deliberative development” but does not elaborate on how this should occur.
Sen’s idea of deliberative democracy and Evan’s ideas of deliberative development provide useful conceptual tools for revisiting innovations in urban governance and challenging existing theoretical arguments about social exclusion, arguments that have influenced how democratic decision-making affects developmental strategies and performance.Footnote 7 Crocker (2008) sees Sen’s ideas about deliberative democracy as a starting point for designing participatory institutions and ensuring that democratic processes are central to development challenges. Could there be a downside to deliberative practices? Could such processes fail to satisfy people’s needs, make them less productive, and limit them in any way? According to Evans, no. Responsive participatory institutions improve citizens’ ability to make their own choices and foster new growth (Evans 2004, 31). However, he fails to address the real limits of local or regional institutions. His analysis ignores the costs of participation and the limits of institutional capacity to administer and coordinate these deliberative processes. He also fails to account for the ideas, people, and positions that were discarded or deemed unimportant by the broader group.
The Challenge and Opportunity of Inclusive Development
Development practitioners view the process of figuring out how to take advantage of participatory practices as a unique challenge and opportunity. The consensus is that participation by the intended beneficiaries improves project performance (Young 2002; Fung 2004; Poortman 2005; Edwards 2008). However, such ideal conditions are not always reached, as embedded power dynamics need to be overcome and the resulting participation must prove valuable and sustainable and show a contribution to the state’s growth.Footnote 8 Sen (1999, 33) counters by stating that more participatory regimes produce greater equality without dampening economic growth, leading to greater stability and resilience.
As has been outlined, integrating channels for open discussion and public interchange is a central part of open and democratic decision-making. However, this idea falls short in practice. Deliberative institutions are difficult to administer and may impact the costs of implementing policy. Whether the costs or efficiency rises or falls as a result of embedding public deliberation in technocratic regimes, the bureaucratic process nonetheless is altered. Evans (2004) argues that embedding the deliberative process into existing institutions impacts the supply of public resources. For example, without deliberative processes informing public managers, public investment decisions would be skewed toward the wealthy and connected. Public managers would have a limited understanding of citizens’ true preferences. Deliberative processes would be more efficient in uncovering and fulfilling felt needs.
Evans lays out a “local-choice hypothesis” and introduces a broad array of theoretical arguments and related evidence on the developmental effects of distribution, participation, and investment in citizens’ capabilities. He suggests that the deliberative development hypothesis does indeed have potential. As I will show later, this becomes even more the case for people with disabilities who are often caught in a web of social stigma, physical access, and institutional neglect by failing to provide alternative text or captioning on website content or sign language at a conference.
Models of Disability from the Perspective of Justice
For persons with disabilities, justice is always contextualized within a framework of laws, landscapes, and social beliefs. Although these factors play out differently in different parts of the world, a steady stream of theorists working at the intersection of disability studies, critical theory, sociology, geography, economics, and philosophy have made major contributions to our understanding of disability as a social phenomenon, not simply a medical diagnosis. A few dominant models include the social model, the medical model, the Nagi model, the International Classification of Functioning, and the human rights model. All these models have been developed to answer, define, and shape our conception of disability. However, this variety of available models can also be problematic. Trani et al. (2011) note that “it is well acknowledged in the literature that three relevant models—the individual or medical, the social model, and the biopsychosocial model based on the ICF—lead to different and sometimes contradictory policy implications” (Trani et al. 2011). Thus, the challenge now is how to best reconcile each and understand the process and outcomes inherent with each model. As will be further discussed, each model carries assumptions, costs, and benefits for individuals with disabilities and the broader environment within which they live.
Understanding the Dominant Models of Disability
In simple and general terms, the social model sees disability as a social construct—disability is not the attribute of the individual; instead it is created by the social environment and requires social change. It is additionally the only model that fully addresses the economic dimension of disability (Mitra 2006).
The medical model (or biomedical model) considers disability as a problem of the individual that is directly caused by a disease, an injury, or other health conditions, and requires medical care in the form of treatment and rehabilitation (Mitra 2018a). The medical model attributes the problem to the individual, who has a condition that is unwanted and that places him or her in the “sick” role with the aim to “cure” or “treat” (Mitra 2006). Such a model is based on “divergence from a capacity of conducting current activities considered as a norm” and thus views disability as an inherently limiting characteristic of the individual (Trani et al. 2011).
The Nagi model identifies functional limitations as the restriction that impairments impose on the individual’s ability to perform the tasks of his or her roles and normal daily activities. These roles include family roles (looking after a child), work roles (having a job), community roles, and other interactional roles, as well as self-care activities. Nagi (1991) defines functional limitation as “an inability or limitation in performing socially defined roles and tasks expected of an individual within a socio-cultural and physical environment.”
The International Classification of Functioning, commonly known as the ICF framework, categorizes disability as a health condition where a particular restriction in activity or participation is the result of a particular body function—within a given environment and context.Footnote 9 Under this model, an activity is the execution of a task or action and participation is the “lived experience” of people in the actual context in which they live (Mitra 2006). The ICF framework is controversial as an evaluation of capacity, as it is restricted to a “standard environment,” as opposed to considering what an individual is capable of in a range of environments, a range that may facilitate or restrict an activity or functioning. As such, the ICF fails to acknowledge that ability is relative to the environment in which one functions (Wasserman et al. 2011). The unique opportunity with respect to finding policy solutions to improving the social position of disability is not in discovering a standard for normal functioning, or a standard for the way an environment is structured, but rather in understanding the multiple ways that society defines the standards by which functions or freedoms will be realized.
Rights-Based Models of Disability
NagataFootnote 10 developed a unique set of studies based on what she calls the “rights model” of disability. She provides a framework from which to integrate rights-based approaches to disability-inclusive development. Her work is sensitive to the social and political realities of disability and incorporates development debates. According to Nagata (2008), a rights model of disability should integrate three key perspectives and create a space to operationalize local solutions. Her model recognizes:
the mutual and dynamic interaction between a disabled individual and their social environments (e.g., social barriers, attitudes, and accessibility);
the diversity existing among different types and categories of disabled persons and the difference in their needs and priorities; and
the relevance of the human-rights-based approach to individual disability experiences in diverse local cultures and customs.
What is innovative about Nagata’s rights model is the central role that social barriers and attitudes play, as well as the cultural context of diverse individual disability experiences. Nagata’s model places critical importance on initially establishing a baseline of the current level of social attitudes. She notes that appropriate national policy and legislation on disability and development must first measure and assess prevalent social attitudes, including discrimination, prejudice, misconception, acceptance, and recognition, in a given society. These baselines “must be established as a prerequisite prior to assessing the effectiveness of any kind of rights-based interventions (for changing society and removing social barriers) in the future, with the ultimate goal of institutionalizing the equal opportunity concept and inclusion among people in those countries” (Nagata 2008: emphasis supplied).
Nagata’s research lays out a set of factors that influence personal empowerment for disabled individuals. She also recognizes that universal factors can influence personal outcomes. Her rights-based model lays out the process in which personal versus environmental or individual versus social dynamics of disability and discrimination can be understood, and incorporates human rights perspectives into the local process of development. Nagata’s findings show that in Jordan and Lebanon, persons with disabilities are highly stigmatized and marginalized. These individuals want to be part of the development process, and in fact exercising their rights through public and political participation has indeed ushered in changes across society. Nagata revealed that rural areas showed significantly lower results (negative attitudes) relative to respondents who resided in urbanized areas (who in turn showed relatively positive attitudes). Such results also hint at the effect that development can have in increasing the general public attitude toward persons with disabilities.Footnote 11
Nagata’s inquiry into attitudes toward persons with disabilities was one of the few on the topic to be conducted in the Middle East and brought to light a set of dynamics that inform my own inquiry. In many ways, Nagata’s (2008) study allowed me to reflect on findings that I had confronted in my own research. The rights-based model was predominantly focused on the role that social barriers and attitudes can play in capability deprivation. What types of theoretical concepts could further support this line of inquiry? If we understand disability as a capability deprivation, then how could we measure a given society’s propensity to deprive persons with disabilities a set of capabilities? More importantly, how could we address such deprivations in the first place.