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

Shaun R Cleaver, Lilian Magalhães, Virginia Bond, Stephanie A Nixon


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.


Disability self-advocacy; qualitative research; participatory research

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Central Statistics Office - CSO (2012). Zambia 2010 Census of population and housing, National analytical report. [Accessed on 24 January 2018]. Available from: http://catalog.ihsn.org/index.php/catalog/4124

Cleaver S (2016). Postcolonial encounters with disability: Exploring disability and ways forward together with persons with disabilities in Western Zambia. Doctoral dissertation. University of Toronto, Toronto, Canada.

Eide A, Loeb M (2006). Living conditions among people with activity limitations in Zambia: A national representative study. Oslo, Norway: SINTEF. [Accessed on 24 January 2018]. Available from: https://www.sintef.no/en/projects/studies-on-living-conditions/

Enns H (n.d.). The role of organisations of disabled people: A disabled peoples' international discussion paper. Independent Living Institute. [Accessed on 24 January 2018]. Available from: http://www.independentliving.org/docs5/RoleofOrgDisPeople.html

Kapata N, Chanda‐Kapata P, Grobusch MP, O’Grady J, Bates M, Mwaba P,

Zumla A (2012). Leprosy trends in Zambia 1991–2009. Tropical Medicine & International Health; 17(10): 1289-1293.

Lorenzo T, Joubert R (2011). Reciprocal capacity building for collaborative disability research between disabled people's organisations, communities and higher education institutions. Scandinavian Journal of Occupational Therapy; 18(4): 254-264.

Oliver M, Barnes C (2010). Disability studies, disabled people and the struggle for inclusion. British Journal of Sociology of Education; 31(5): 547-560.

Suarez-Balcazar Y, Hammel J, Helfrich C, Thomas J, Wilson T, Head-Ball D (2005). A model of university-community partnerships for occupational therapy scholarship and practice. Occupational Therapy in Health Care; 19(1-2): 47-70.

Young Y, Reeve M, Grills N (2016). The functions of Disabled People’s Organisations (DPOs) in low and middle-income countries: A literature review. Disability, CBR and Inclusive Development; 27(3): 45-71. http://doi.org/10.5463/DCID.v27i3.539

Zambia (2012) Persons with Disabilities Act. Lusaka: Parliament of Zambia; 2012. Law No. 6. [Accessed on 24 January 2018]. Available from: http://www.zambialii.org/zm/legislation/act/6-11

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

Copyright (c) 2018 Shaun R Cleaver, Lilian Magalhães, Virginia Bond, Stephanie A Nixon

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