With or without us? An audit of disability research in the southern African region

Abstract

BackgroundDisability research in the global South has not received significant critical consideration as to how it can be used to challenge the oppression and marginalisation of people with disabilities in low-income and middle-income countries. The Southern Africa Federation of the Disabled (SAFOD) embarked on a programme to use research to influence policy and practice relating to people with disabilities in Southern Africa, and commissioned an audit on research expertise in the region. In this article, a research audit is reported on and situated in a framework of emancipatory research.ObjectivesThis article sets out to describe a preliminary audit of disability research in the southern African region and to draw conclusions about the current state of disability research in the region and make recommendations.MethodThe research method entailed working with disability researchers in the ten SAFOD member countries and utilising African disability networks hosted on electronic media. Disability researchers working in the region completed 87 questionnaires, which were reviewed through a thematic analysis.ResultsThe discussion of results provides a consideration of definitions of disability; the understanding of disability rights, research topics and methodologies; the participation of people with disabilities in research; and the challenges and opportunities for using research to inform disability activism.ConclusionThe conclusion highlights critical issues for future research in the region, and considers how a disability researcher database can be used as a tool for disability organisations to prioritise research that serves a disability rights agenda.

Barriers to the Implementation of the Health and Rehabilitation Articles of the United Nations Convention on the Rights of Persons with Disabilities in South Africa

“…9 In South Africa, it has been argued that research on disability has not been conducted in a way that can contribute to the development of concrete solutions or effective advocacy. 10,11 Specifically, the lack of qualitative data from South Africa has frustrated efforts to identify where the difficulties lie in successfully implementing good disability policies. 5 Globally there is a need for research to be specially targeted on the CRPD implementation process.…”

Education versus screening: the use of capacity to consent tools in psychiatric genomics

“…Research models which are thought best to reflect this shift in orientation include qualitative studies that critically situate researchers and their positioning vis-à-vis participants and seek creative strategies to better capture and understand the subjective voice, perceptions and experiences of individuals living with mental disorder and intellectual disability. Moreover, meaningful participation is equated with not just participation, but the inclusion of such individuals in setting research agendas, the allocation of resources and participation in ethical review boards 11. Community engagement through mechanisms such as community advisory boards is one consideration39, although there is much debate about how to frame the goals and implementation of such mechanisms, and evaluate their effectiveness in meaningful ways 40…”

“…By implication, researchers may have an ethical obligation to promote as many possible voices of people with mental disorder and intellectual disability, with an emphasis on the need for research that is inclusive and participatory. Such individuals are to be treated as co-producers of knowledge which promotes their equal treatment and respect 10 11. The implication of this normative reorientation is that informed consent ought to function with a similar inclusive ethos towards potential research participants, using mechanisms that support improved understanding of the research process and promote meaningful engagement with consent materials.…”

“…This question of empowerment is addressed in the second shift in moral emphasis: away from ‘fixing’ individuals with disability to the requisite supports that need to be in place within their societal and environmental context. Embedded within this human rights framework is a commitment to the social model of disability which attributes disability to environmental and structural barriers that hinder equal participation with others 11 16. Impairments of the mind and body, on the other hand, are presumed to be value-neutral aspects of the person which require positive accommodation.…”

“…The point to emphasise is that one need not go so far as the Committee’s General Comment to recognise the important normative shift that universal legal capacity represents in its challenge to questionable assumptions within standard tests of mental competence (such as a preoccupation on internal cognitive processes and the putative justification of substituted decision-making regimes). That this human rights framework towards disability is gaining traction is apparent with the ratification of domestic legislation in line with the CRPD, with many countries using the framework to underpin research protocols 11 21. Nonetheless, how consent tools should be applied and used in light of the participatory ethos remains relatively unexplored thus far, aside from an emphasis on participatory technologies and methodologies (such as the use of photography and voice diaries) 21–26…”