Exclusion through Attempted Inclusion:  Research Experiences with Disabled Persons’ Organisations (DPOs) in Western Zambia

Shaun R Cleaver; Lilian Magalhaes; Virginia Bond; Stephanie A Nixon

doi:10.5463/dcid.v28i4.670

Shaun R Cleaver ⁽¹⁾, Lilian Magalhaes ⁽²⁾, Virginia Bond ⁽³⁾, Stephanie A Nixon ⁽⁴⁾

(1) School of Physical & Occupational Therapy, McGill University, Canada,

(2) Occupational Therapy Department, Federal University of Sao Carlos, Brazil,

(3) Department of Global Health & Development, London School of Hygiene & Tropical Medicine, United Kingdom,

(4) Department of Physical Therapy, University of Toronto, Canada

https://doi.org/10.5463/dcid.v28i4.670

Issue
Vol. 28 No. 4 (2017): Winter 2017

Submitted
September 14, 2020

Published
March 16, 2018

Keywords:

Disability self-advocacy, qualitative research, participatory research, Zambia

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Abstract

Partnership with disabled persons’ organisations (DPOs) is often presented as one mechanism to ensure the inclusion of persons with disabilities in research that concerns them. In working with two DPOs in Western Zambia, we learned that one of these groups was organised in a way that differed from our own presumptions and the descriptions of DPOs in literature: the group was fluid in membership and willing to re-formulate itself according to the priorities of visitors. From this we understand that limiting research partnerships to DPOs, as typically described, could lead to the inadvertent exclusion of people involved in many different forms of organising by persons with disabilities.

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Authors

Shaun R Cleaver

School of Physical & Occupational Therapy, McGill University

shaun.cleaver@mail.mcgill.ca (Primary Contact)

Lilian Magalhaes

Occupational Therapy Department, Federal University of Sao Carlos

Virginia Bond

Department of Global Health & Development, London School of Hygiene & Tropical Medicine

Stephanie A Nixon

Department of Physical Therapy, University of Toronto

Author Biographies

Shaun R Cleaver, School of Physical & Occupational Therapy, McGill University

Dr. Shaun Cleaver is a Postdoctoral Fellow in the School of Physical and Occupational Therapy of McGill University. He completed his PhD in Rehabilitation Sciences and Global Health at the University of Toronto. His research is currently focused on disability policy, meanings of disability, and "North-South collaboration" in Zambia.

Lilian Magalhaes, Occupational Therapy Department, Federal University of Sao Carlos

Dr. Lilian Magalhães is an Adjunct Professor in the Occupational Therapy Department at the Federal University of São Carlos. She uses qualitative research and visual methodologies with antioppressive strategies to overcome social and health inequities for/with vulnerable and invisible populations. She has specific foci on diversity, immigration, occupational justice, and culture; asking how world views and belief systems are intertwined to shape the way we see ourselves and others.

Virginia Bond, Department of Global Health & Development, London School of Hygiene & Tropical Medicine

Dr. Virginia Bond is an Associate Professor in the Department of Global Health and Development and the London School of Hygiene & Tropical Medicine. She is a social anthropologist, pursuing mixed methods and interdisciplinary approaches to both urgent public health and social issues. Her areas of expertise are the ethnographies of the TB and HIV epidemics in Zambia and South Africa since the early 1990s (including the role of children and the convergence of the dual epidemics with food insecurity), health related stigma and the influence of local contexts on the uptake of public health interventions.

Stephanie A Nixon, Department of Physical Therapy, University of Toronto

Dr. Stephanie Nixon is an Associate Professor in the Department of Physical Therapy at the University of Toronto. She has been an HIV activist and researcher for 20 years. She now leads a programme of research in Lusaka, Zambia using a critical social science approach to explore links between HIV, disability and rehabilitation. Dr. Nixon also investigates the role of privilege in shaping health education, research and activism.

1.

Cleaver SR, Magalhaes L, Bond V, Nixon SA. Exclusion through Attempted Inclusion: Research Experiences with Disabled Persons’ Organisations (DPOs) in Western Zambia. DCIDJ [Internet]. 2018 Mar. 16 [cited 2025 Mar. 12];28(4):110-7. Available from: https://dcidj.uog.edu.et/index.php/up-j-dcbrid/article/view/281

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