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Adapting an education program for parents of children with autism from the United States to Colombia

MAGANA, Sandy
TEHERO HUGHES, Marie
SALKAS, Kristen
MORENO ANGARITA, Marisol
2019

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One of the lingering aspects of coloniality in the Americas is paternalism. In Latin America, this power structure plays out among people with autism spectrum disorder (ASD) through beliefs that people with disabilities need to be protected and guarded at home, and that they are unable to learn and function in society. We developed a program to empower parents of children with ASD through peer education to help their children realize their potential. This program was implemented in the United States (US) for Latino immigrant families and then adapted for use in Bogotá, Colombia. In this paper, we discuss some of the ways the manifestations of colonialism have influenced the adaptation of this program from North to South. For example, in Colombian society it is not common to use non-professionals or peers to deliver scientific information because within a paternalistic society there is ‘respeto’ (respect) for persons who are older, male and have credentials. Therefore, promoting the use of peer-mothers in this context was a challenge in the adaptation that warranted compromise. We explore and discuss similarities and differences in the adaptation and delivery between North and South and problematize the idea of Latinos in the US versus Colombia.

 

Disability and the Global South, 2019 Vol.6, No. 1

The capacity of community-based participatory research in relation to disability and the SDGs

GREENWOOD, Margo
2017

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The 2030 Agenda pledges to foster shared responsibility, recognizes all as crucial enablers of sustainable development, and calls for the mobilization of all available resources. It also commits to multi-stakeholder partnerships and pledges to be open, inclusive, participatory and transparent in its follow-up and review. Community-based participatory research (CBPR) equitably involves community members, organizational representatives and researchers, enabling them to share power and resources through drawing on the unique strengths that each partner brings. It aims to integrate any increased knowledge and understanding into action, policy and social change to improve the health and quality of life of community members. CBPR involves recruiting community or peer researchers, involving them in planning and offering them training to undertake interviews and observations in their context. They are also part of the analysis and dissemination process, and continue to work with local partners on advocacy plans and events after projects and research have finished. People with disabilities are actively part of the research process throughout. Drawing on relevant literature and current CBPR disability research in East and West Africa, this paper puts forward CBPR as a methodology that can enable community members to identify key barriers to achieving the SDGs, and inform how policy and programmes can be altered to best meet the needs of people with disabilities. It demonstrates CBPR in practice and discusses the successes and complexities of implementing this approach in relation to the SDGs. The paper also highlights findings such as the high level of support needed for community research teams as they collect data and formally disseminate it, the honest raw data from peer to peer interaction, a deep level of local ownership at advocacy level, emerging issues surrounding meaningfully involving community researchers in analysis, and power differentials. A key conclusion is that to join partners with diverse expertise requires much planning, diplomacy, and critical, reflexive thought, while emphasising the necessity of generating local ownership of findings and the translation of knowledge into a catalyst for disability-related policy change.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

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