Ask us too! Doing participatory research with disabled children in the global south. (August 2014)

• Record Type: Journal Article
• Authors: Wickenden, Mary; Kembhavi-Tam, Gayatri
• Other Names: Singal Nidhi guest-editor.; Muthukrishna Nithi guest-editor.
• Is Part Of: Childhood. Volume 21:Number 3(2014:Aug.)
• Page Start: 400
• Page End: 417
• Publication Date: 2014-08
• Subjects: Disabled children -- inclusion -- participatory research -- qualitative methods -- South Asia; Children -- Periodicals; Child development -- Periodicals; Children -- Research -- Periodicals; 305.23
• DOI: 10.1177/0907568214525426
• Languages: English
• ISSNs: 0907-5682

Abstract

This article considers how disabled children and young people living in the global south can be included actively in research that explores their lives. While acknowledging the complex, theoretical dilemmas in the overlapping arenas of childhood, disability and international development, the focus here is on methodology. Many researchers argue that children in diverse contexts can be active participants in research and this is increasingly occurring globally. However, this trend towards consulting children themselves is rarely extended to those with disabilities. Arguably, they are accidentally forgotten, assumed to have nothing to say or perceived to be methodologically difficult to include. Thus, disabled children and young people's perspectives are overlooked, particularly in the global south. We describe two participatory research projects with disabled children and young people in India and Sri Lanka, and focus particularly on practical issues that arose including recruitment, information and consent processes and data collection methods. We argue that considering these issues and making the necessary adaptations to enable children with a variety of impairments to participate meaningfully contributes to enacting both the relevant United Nations conventions, the 1989 United Nations Convention on the Rights of the Child and the 2006 United Nations Convention on the Rights of Persons with Disabilities. Advocating their participation without making appropriate provisions is potentially tokenistic and unethical. It is necessary and possible to include them both in 'mainstream' child-focussed research, and specific disability-orientated projects. Involving disabled children in research has dual purposes: inclusion of their perspectives alongside those of other children and highlighting their disability-specific views where relevant. What they say may be surprising to some and challenge assumptions about them. Importantly, this will contribute to reducing their marginalisation from mainstream society.