By Beryne Odeny (Washington University in St. Louis, Department of Surgery) and Julia Robinson (PLOS Global Public Health) The first in-person CUGH…
By guest contributors Xanthe Hunt, Zara Trafford, Prince Changole, Ruth Useh & Tom Shakespeare
The dominant perception of disability as individual pathology has resulted in the systemic oppression and exclusion of disabled people. By actively challenging these perspectives over the last five decades, social movements led by disabled people have produced an approach that is focused on identifying how the sociocultural, economic and political barriers to equity experienced by disabled people result in stigma and marginalisation. Indeed, although around one billion people live with some form of disability, people with disabilities still experience poorer access to and lower outcomes in education, health services, employment and community participation worldwide.
Disability-inclusive policies, legislation, services and interventions continue to be neglected in planning and programming, and there is a lack of contextually-relevant evidence available to inform such policy-making. This is especially the case in low-resource settings and in low- and middle-income countries (LMICs), where an estimated 80% of the world’s disabled population resides, partly because of the proven cyclical relationship between multidimensional poverty and disability.
In addition to generating strong, relevant evidence to support the design and implementation of disability-inclusive policies and strategies, we must also find more innovative approaches to ensuring that this evidence reaches those who have the power to make such changes. However, there are few avenues for translating and communicating the knowledge generated in academic contexts to important decision-makers outside of academia. The cost of access to journals, the widespread use of exclusionary language (jargon), and the lack of regular communication between communities within and outside of academia often render important data and knowledge inaccessible to government and nongovernmental decision-makers, and sometimes even to academic researchers based at low-resourced institutions.
The Disability Evidence Portal (DEP) was developed in 2019 with a view to addressing some of these challenges as they affect the communication of disability-related evidence. The DEP is an online platform that seeks to enable and empower decision-makers with evidence-based knowledge on how best to improve access, health, education, livelihood and social outcomes for people with disabilities, worldwide. Founded by Professor Tom Shakespeare and colleagues at the International Centre for Evidence in Disability (ICED) in the London School of Hygiene and Tropical Medicine (LSHTM), the DEP has recently moved to its new home at the Institute for Life Course Health Research (ILCHR) at Stellenbosch University in South Africa, under the leadership of founding member, Dr Xanthe Hunt.
In response to the evidence-to-action gap described above, the DEP aims to take advantage of the efficiency and reach of digital knowledge management solutions, and to identify and highlight important gaps in knowledge around disability-inclusive development. The portal has a specific focus on LMICs, most of which are in the global south, both because of the scale of the disabled population and because of the dearth of reliable and contextually-relevant evidence to support inclusive policy in low-resource settings. There is also an emphasis on reaching the intended audience: governmental and non-governmental decision-makers. As such, DEP briefs synthesise existing review evidence and present plain language recommendations, key challenges and urgent policy priorities in areas including health, education, social protection, livelihoods and wellbeing. Ultimately, the DEP aims to serve as a repository of evidence on ‘what works’ to improve the lives of people with disabilities in LMICs.
But the mandate of DEP extends beyond strengthening the pipeline from evidence to practice. We also have an interest in the contextualisation of evidence. As is the case for global public health research in general, most knowledge about disability is still produced in and based on evidence from high-income countries (HICs). Historical patterns of structural violence and insufficient investment in research infrastructure and institutions in LMICs continue to limit the production and critically, the leadership of disability and other global health research in and from the global south. These historical patterns are echoed and deepened by the fact that the majority of existing global health, development and humanitarian funding is disbursed to researchers based at global north institutions, or to non-governmental organisations situated in HICs. In Africa, archetypes of anti-blackness have further concretised these patterns, with research often being conducted by or with the support of black researchers but without the appropriate redirection of primary funding and key authorship positions.
More recently, this “neo-colonialism of global health”, enacted through the domination of institutions and ideas from the global north, has “muted the local voice” by silencing local perspectives. Important health-related issues in LMICs are thus often deprioritised by HIC partners or funders, who may have different interests. These patterns have also perpetuated “parachute [and] helicopter research”, resulting in agendas that tend to elide the influence of legislation, norms, and global power dynamics – such as, for example, racism, trade agreements or immigration policies – on health risks and outcomes. For researchers and decision-makers living within LMIC contexts, these structural factors are abundantly clear and impossible to ignore.
By moving, after an initial incubation period, from a northern institution to an institution in the south, the DEP is demonstrating the feasibility of sustainable north-south partnerships, a key step toward addressing inequities in north-south power dynamics. This phase of our partnership also models the possibility and importance of a shift in the centre of gravity in global research practice from the north to the south as a means for altering entrenched power dynamics.
Genuine changes in ownership of resources and leadership embody the idea that “global health research is not just about technical skills in science, [but] also about scaling evidence, fighting systems that perpetuate inequities and injustice, [and] social trust”, issues which are profoundly enhanced by local experience and contextually-specific knowledge and understanding. The move of the DEP from an institution in the UK to one in South Africa, then, marks a premeditated step on the portal’s pathway to being a truly southern resource for action, and toward improved global networking, local and regional capacity-building and disability-inclusive research and advocacy, from the south.
About the authors:
Dr Xanthe Hunt (PhD) is a global public health researcher and evidence synthesis expert, with close to 10 years of experience in disability studies. She is a Senior Researcher at the Institute for Life Course Health Research in the Department of Global Health at Stellenbosch University in South Africa, and also works as a consultant to the World Health Organization in Geneva, and London School of Hygiene and Tropical Medicine in the UK. Her areas of expertise include child development, autism, sexual and reproductive health, and violence, with a focus on intersections between disability and other indices of marginalisation. She is the Co-Director of the Stellenbosch Disability Research Hub, and Team Lead for the Disability Evidence Portal.
Zara Trafford is a public health and disability researcher with a background in medical anthropology and eight years of experience in interdisciplinary health research. She is a Researcher at the Institute for Life Course Health Research in the Department of Global Health at Stellenbosch University in South Africa and Project Lead for the Disability Evidence Portal. Zara’s areas of interest include disabled children’s childhood studies, the day-to-day implementation of policy in a complex postcolonial bureaucracy, and lived experiences of health and social inequities, all of which were explored in her recent doctoral thesis.
Prince Changole (PhD) is an economist and researcher with six years of experience in development economics research and research synthesis. He is a Researcher at the Institute for Life Course Health Research in the Department of Global Health at Stellenbosch University in South Africa. Prince works in evidence synthesis for and provides technical support of the Disability Evidence Portal. His research interests include health, education, poverty and gender inclusion.
Ruth Useh is a public health and social sciences researcher with an academic background in Social and Behavioural Sciences and Psychology, with three years’ experience in research consultancy and qualitative research and writing. She is a Junior Researcher at the Institute for Life Course Health Research in the Department of Global Health at Stellenbosch University in South Africa, and Project Manager of the day-to-day running of the Disability Evidence Portal. Ruth is also a PhD candidate in disability inclusive development. Her interests include mental health, human rights, social theories and behaviour, disability studies, and knowledge translation.
Dr Tom Shakespeare is Professor of disability research at the London School of Hygiene and Tropical Medicine, and was one of the team that produced the WHO/World Bank World Report on Disability (2011). His books include The Sexual Politics of Disability (1996) and Disability Rights and Wrongs (2006).
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