Since the adoption of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2006, the world has grappled with the idea of disability-inclusive development. Indeed, much progress has been made in the replacement of the charity and medical models of disability with the social model. According to the social model, persons with disabilities are equal participants in the development process and in determining the pursuits of life they perceive as valuable (such as education, healthcare, entertainment, and employment). For example, in East Asia and Pacific Region, UNICEF’s Rights, Education and Protection (REAP) I and II programmes have engaged CRPD member states to advance the participation of children with disabilities in education, healthcare delivery, and social protection, among others. Likewise, Their world’s Global Business Coalition for Education (GBC) is working to advance inclusion of persons with disability in the labor force and in the development of various technologies by businesses. At the heart of the social model of disability is the belief that the society needs to learn to adapt to people with disabilities. There is much hope that, using the various tools of the CRPD, nations will continue to make important progress in disability inclusion.
We’ve Made Improvements, So What’s the Problem?
While no single programme or intervention can be expected to resolve the long-standing problem of a lack of disability inclusion, certain lessons have been learned about interventions that work best and those that do not work as well. At Includovate, a significant challenge we have observed is that, while the goal for all member states of the CRPD is the same — that is, to attain total disability inclusion at all levels of societal life — these member states have contextual variations that make it hard to attain this goal in the same manner. In particular, we have observed that the tendency by academics, researchers, and policy decision-makers at the international level to universalise ways of knowledge can inhibit alternative pathways for attaining desirable disability inclusion in variant societies. For this reason, we have devised a participatory research approach to disability that does not only comprehensively involve persons with disabilities, but also carefully studies the unique social and policy context these persons inhabit and so formulate interventions that address the core of existing social norms, practices, assumptions, and governance structures.
What’s Wrong with Universalising Knowledge?
We believe that knowledge paradigms are at the same time power paradigms. Often, knowledge generated in one part of the world carries with it ideological and experiential undertones to the extent that directly applying it unfiltered in another setting supplants the receiving society’s unique way of acquiring knowledge and effecting normative change. Therefore, we believe that, while learning of best practices around the world is crucial, especially through the lens of the CRPD, researchers and policy practitioners must also take into account context and not just content when designing programmes to advance change in harmful social norms and policies on disability.
One common argument against the universalisation of disability knowledge is that researchers, Western researchers in particular, use a domineering approach that does not account for the unique realities of the Global South[4]. Furthermore, despite accounting for over 80% of the global population of persons with disabilities, the Global South remains at the periphery of development policy, research, and programming, and is virtually excluded from the Western-centric disability studies that drive the discourse in these fields. We believe that the knowledge that Includovate generates must pragmatically influence policy and social change processes. As such, participatory research practices in the Global South must help inform policy processes, cross-pollinating with and contributing to the global disability policy discourse on an equal footing.
Is a Participatory Research Paradigm Justifiable?
Building on the concept that knowledge begets power and that epistemic dominance stifles agency and self-determination, we at Includovate seek to revolutionise disability research through participatory research based on constructivist knowledge paradigms. The basic approach for any constructivist framework is to start from the understanding of local context and how a people self-define.[5] Depending on context, social factors impacting people’s experiences vary. Although this approach appears obvious and easy, it is elusive for many researchers and policy decision-makers. Like Hang’andu argues, starting with the immediate socioeconomic and political factors that characterise the experience of persons with disabilities in a given society is important because the experiences of persons with disabilities (their opportunities, constraints, threats, and hopes) are largely contingent on these broader sociocultural, economic, and political environments. For example, negative attitudes towards persons with disabilities or the elderly may be born of more complex non-material factors, such as ancestry, religion, or social relations. All of these factors affect an individual’s self-understanding and experience of life and must be accounted for in disability research. Like Shaun Grech, argues, it is easy for Western policy and academic experts to transpose evaluation perspectives on non-western communities. For example, the use of industrialist and individualist views in explaining unemployment do not take into account the roles and influences of community and culture and other context-specific support systems and vulnerabilities.
What is the Promise? Participatory Approaches as an Alternative
Participatory research is empowering. At the core of the CRPD is the notion of ownership of development processes by persons with disabilities through their own agency. Economist and philosopher Amartya Sen argues in his celebrated book “Development as Freedom” that human development is premised on freedom. In other words, agency is integral to human development. Participatory research is antithetical to neocolonial approaches of knowledge accumulation that displace agency and assume epistemic superiority. In participatory research, we deconstruct knowledge and rebuild it bottom-up through participant agency and self-definition. Persons with disabilities themselves tell us what their cosmological understandings are, how they fit in, and what it is in their worldview that is inhibitive of meaningful agency. In her article entitled “Decolonizing disability: thinking and acting globally,” Helen Meekosha questions the neoliberal tendencies embedded in the transnational disability discourse. Meekosha, along with several others, like Soldatic and Grech, has questioned the ideological neutrality of Western-centric disability ideas. She argues that they are characterised by colonial supremacy and cultural destruction and dislocation. It is important, therefore, for institutions like Includovate to examine the efficacy of knowledge and policy paradigms in advancing the precepts of the CRPD and the needs of persons with disabilities. As Cleaver claims in his doctoral thesis based on research in western Zambia:
Far more common was the sentiment that my training, as a rehabilitation provider from Canada, did not fit the situations that I was facing in the global South. I felt that the incongruence of training and needs was often premised on the notion of culture, in that it seemed that my understandings of disability, society, health, and healing were discordant with the understandings of the clients… Even after having considered the more dispersed approaches of capacity building through the training of additional professionals and raising funds for their subsequent employment, my contributions remained woefully inadequate in comparison to the needs, and dangerously dependent upon an ongoing engagement that I was not planning to maintain. From the start of my engagement in the global South, it was clear that rehabilitation provided by practitioners from the global North was not an optimal strategy to improve the situation of persons with disabilities in the global South
This stresses the point that disability research should take seriously sociocultural and contextual heterogeneity and bend more towards exchange of ideas that epistemic conquest. We at Includovate are determined to execute an innovative approach to disability research and disability inclusion policy, one that places at the center of its endeavours persons with disabilities themselves as core influencers of the knowledge we generate and policies we help design. We are eager to revolutionise disability research and bring about an expansive theory of change.
About the authors
Dr. Priva Hang’andu is Includovate’s Governance Principal Researcher. He has taught Political Science in Canada and in Zambia. His research interest is in the role of transnational policy actors in driving disability and gender policy change in Africa. He also researches democratisation and its pathways. Priva has published on disability, institutions, democratization in Africa, and on social policy in internationally reputed academic journals. He has also worked in non-governmental organizations and consulted with international organizations such as the African Development Bank. Priva served for several years as the governance and political advisor at the United States Department of State.
Footnotes
[1] The charity model of disability is an approach based on kindness and not on rights. For example, attending school or receiving rehabilitative care was seen as kindness that others could bestow on an individual with a disability, not as something to which that individual has a right to call upon.
[2] In the medical model, access to resources or the ability to make decisions that would affect the life of a person with a disability — deciding where an individual with a disability would live or whether they could marry, was seen as decisions to be made by a medical expert or another person serving in an official capacity.
[3] The social model is based on human rights. In this new framework, persons with disabilities and their families have the right to make decisions on their own behalf to access all resources available to all people. This ‘rights based’ approach has evolved out of the social model and is now codified in both international and national laws as well as legal instruments to turn these laws into programme and policy.
[4] The World Bank defines the Global South as encompassing countries that are newly industrialised or are in the process of industrialization. In this blog, we use the term to denote countries in the geographic south as opposed to the Northern Hemisphere.
[5] Self-defining here means how a community of people collectively perceive and explain the word around them and code that experience into a shared culture, language, reasoning, and identity.
References
Grech, S. (2009). Disability, poverty and development: Critical reflections on the majority world debate. Disability & Society, 24(6), 771–784.
Grech, S. (2011). Recolonising debates or perpetuated coloniality? Decentring the spaces of disability, development and community in the global South. International Journal of Inclusive Education, 15(1), 87–100.
Haang’andu, P. (2019). 19 Towards an Afrocentric disability activism. Global Perspectives on Disability Activism and Advocacy: Our Way. Meekosha, H. (2011). Decolonizing disability: thinking and acting globally, Disability & Society, 26(6), 667–682.
Sen, A. K. (2001). Development as freedom. Oxford University Press. Soldatic, K. and Grech, S. (2014). Transnationalising disability studies: Rights, justice and impairment. Disability Studies Quarterly, 34(2).
