Community Action Research in Disability (CARD): An inclusive research programme in Uganda
The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.
The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.
CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.
Barnes C, Mercer G (1997). Doing disability research. The Disability Press: 236.
Barnes C (2003). What a difference a decade makes: Reflections on doing 'Emancipatory' disability research. Disability & Society; 18(1): 3-7. https://doi.org/10.1080/713662197
Carter JA, Murira GM, Ross AJ, Mun' Ala-Odera V, Newton CRJC (2003). Speech and language sequelae of severe malaria in Kenyan Children. Brain Injury; 17: 217-224. https://doi.org/10.1080/0269905021000038447. PMid:12623498
Charlton JL (1998). Nothing about us without us: Disability, oppression and Empowerment. University of California Press: Berkeley and Los Angeles, California. https://doi.org/10.1525/california/9780520207950.001.0001
Finkenflügel H (2004). Empowered to differ: Stakeholders' influences in community-based rehabilitation. Vrije Universiteit: Netherlands
Gona JK, Hartley S, Newton C (2006). Using participatory rural appraisal (PRA) in the identification of children with disabilities. Rural and Remote Health; 6(3): 553. PMid:16956314
Greenwood CR, Abbot M (2001). The research to practice gap in special education. Teacher Education and Special Education; 24(4): 276-289. https://doi.org/10.1177/088840640102400402. https://doi.org/10.1177/088840640102400403
Hill Z, Kirkwood B, Kendall C, Adjei E, Arthur P, Agyemang C (2007). Factors that affect the adoption and maintenance of weekly vitamin A supplementation among women in Ghana. Public Health Nutrition; 10(9): 827-833. https://doi.org/10.1017/s1368980007382554
Madden RH, Lukersmith S, Millington MJ, Scarf C, Fortune N, Hartley S, Llewellyn G (2015). Participatory monitoring of community-based rehabilitation and other disability-inclusive development programmes: The development of a manual and menu. Disability, CBR and Inclusive Development; 26(4): 26-52 https://doi.org/10.5463/dcid.v26i4.472
Mmatli TO (2009). Translating disability–related research into evidence-based advocacy: The role of people with disabilities. Disability and Rehabilitation; 31(1): 14-22.
Oliver M (1992). Changing the social relations of research production? Disability, Handicap and Society; 7(2): 101-114. https://doi.org/10.1080/02674649266780141
United Nations (2006). UN Convention on the Rights of Persons with Disabilities Available from: http://www.un.org/disabilities/convention/conventionalfull.shtml [Accessed on 22 January 2016].
Werner D (1998). Nothing about us without us: Developing technologies for, by, and with disabled persons. Health Wrights Press: Palo Alto, California
World Health Organisation (2011). International classification of functioning, disability and health. Available from: www.who.int/classification/icf/en/ [Accessed on 21 January 2016]
World Health Organisation (2011). World report on disability. WHO: Geneva
Yousafzai AK, Lynch P, Gladstone M (2014). Moving beyond prevalence studies: Screening and interventions for children with disabilities in low- and middle-income countries. Archive of Disease in Childhood; 99: 840-848. https://doi.org/10.1136/archdischild-2012-302066. PMid:24647995
- There are currently no refbacks.
Copyright (c) 2017 Sally Hartley, Aisha Yousafzai, Maria Goretti Kaahwa, Harry Finkenflugel, Angie Wade, Janet Seeley, Maria de Lourdes Drachler, George Bazirake, Yasmine Alavi, Eric Mucurnguzi, Nyamutale Winifred Mataze
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
© Disability, CBR & Inclusive Development