Don’t Forget Us, We Are Here Too! Listening to Disabled Children and Their Families Living in Poverty
Discourses in the disability movement and disability research are predominantly focussed on adults. This volume, ironically, is further evidence of this bias. In this chapter we set out to illustrate why the lives of disabled children and young people and their families, especially those living in low-income settings globally, warrant more attention. We argue that their perspectives can and should be more actively sought. We draw on theory from childhood studies and disability studies, both of which maintain a bias towards consideration of those in the global North. We also draw on participatory research and project work, first with disabled children themselves in South Asia and Uganda, and second with parents in South Africa, to show that there is much to be learned by listening to both groups, encouraging their direct participation in research as well as in programme planning, implementation and evaluation.
KeywordsChildren Disability Families South Asia Uganda South Africa Family support systems Childhood development Disability intervention Participatory research and practice
- African Child Policy Forum. (2010). Breaking the Silence: Violence Against Children with Disabilities in Africa. Addis Ababa: The African Child Policy Forum. Retrieved from https://app.box.com/s/6sx37rls7t0m5c90yps3/1/116120024/1019081819/1
- Bhabha, F. (2009). Disability equality rights in South Africa: Concepts, interpretation and the transformation imperative. South African Journal of Human Rights, 25(2), 217–223.Google Scholar
- Boyden, J., & Ennew, J. (1997). Children in focus—A manual for participatory research with children. Stockholm: Radda Barnen.Google Scholar
- Cavet, J. (1998). Leisure and friendship. In C. Robinson & K. Stalker (Eds.), Growing up with disability (pp. 97–110). London: Jessica Kingsley.Google Scholar
- Christensen, P., & James, A. (Eds.). (2000). Research with children: Perspectives and practices. London: Routledge Falmer.Google Scholar
- Curran, T., & Runswick-Cole, K. (Eds.). (2013). Disabled children’s childhood studies: Critical approaches in a global context. Basingstoke: Palgrave-Macmillan.Google Scholar
- Davis, J., Watson, N., & Cunningham-Burley, S. (2003). Learning the lives of disabled children: Developing a reflexive approach. In P. Christensen & A. James (Eds.), Research with children: Perspectives and practices (pp. 201–224). London: Routledge Falmer.Google Scholar
- Farmer, P. (1996). On suffering and structural violence: A view from below. Daedalus, 125(1), 261–283.Google Scholar
- Ford-Shubrook, A. (2007). Disability inequality within Orange Farm: Barriers to education for children with disabilities within a township community in Johannesburg, South Africa. London: University of London.Google Scholar
- Fujiura, G. T., & Yamaki, K. (2000). Trends in demography of childhood poverty and disability. Exceptional Children, 66(2), 112–130.Google Scholar
- Hanass-Hancock, J. (2012). The intersection of disability and HIV in eastern and southern Africa In Global HIV/AIDS politics, policy and activism: Persistent challenges and emerging issues. vol 2 Pager. Google Scholar
- Human Rights Watch. (2010). Barriers to full realization of humans rights for women and children with disabilities. New York: Human Rights Watch.Google Scholar
- James, A. (1999). ‘Learning to be friends’: Participant observation amongst English school-children (the Midlands, England). In C. W. Watson (Ed.), Being there: Fieldwork in anthropology (pp. 98–120). London: Pluto Press.Google Scholar
- James, A., Jenks, C., & Prout, A. (1998). Theorizing childhood. Cambridge: Polity Press.Google Scholar
- Lansdown, G. (2002). Disabled Children in South Africa: Progress in implementing the Convention on the Rights of the Child. Cape Town: Committee on the Rights for Disabled Children.Google Scholar
- Lansdown, G. (2012). Using the human right framework to promote the rights of children with disabilities: Working paper. An analysis of the synergies between CRC, CRPD, CEDAW. New York: UNICEF.Google Scholar
- Lansdown, G., Groce, N., Deluca, M., Cole, E., Berman-Bieler, R., Mitra, G., Farkas, A., Sabbe, L., & Burlyaeva-Norman, A. (2013). Children and young disabled people: Fact sheet. New York: UNICEF.Google Scholar
- Lorenzo, T. (2012). Advocating for equality in accessing livelihood assets for disabled youth in South African Human Rights Commission South African Human Rights Commission Equality Report—Commentaries on equality: Race, gender, disability and LGBTI Issues (pp. 42–45). Johannesburg: SAHRC.Google Scholar
- Mont, D. (2014). Childhood disability and poverty. LCD Working Paper 25. Leonard Cheshire Disability. Retrieved from http://www.ucl.ac.uk/silva/lc-ccr/centrepublications/workingpapers/WP25
- Saloojee, G., Phohole, M., Saloojee, H., & Ijsselmuiden, C. (2007). Unmet health, welfare and educational needs of disabled children in an impoverished South African peri‐urban township. Child: Care, Health and Development, 33(3), 230–235.Google Scholar
- Save the Children & Handicap International. (2011). Out from the shadows. Sexual violence against children with disabilities. London: Save the Children UK. Retrieved from http://www.savethechildren.org.uk/sites/default/files/docs/out_of_the_shadows_5.pdf.
- Sicking, L., Hanass Hancock, J., & van Brakel, W. (2013). The challenges of reporting, investigating, and prosecuting of sexual violence among disabled people in south Africa. Amsterdam: HEARD UKZN.Google Scholar
- Soudien, C., & Baxen, J. (2006). Disability and schooling in South Africa. In B. Watermeyer, L. Swartz, & T. Lorenzo (Eds.), Disability and social change: A South African agenda (pp. 149–163). Pretoria: HSRC Press.Google Scholar
- Thomas, C. (2004). Developing the social relational in the social model of disability; a theoretical agenda. In C. Barnes & G. Mercer (Eds.), Implementing the social model of disability; theory and research. Leeds: The Disability Press.Google Scholar
- Trani. J., Kett, M., Bakhshi, P., & Bailey, N. (2013). Disability, vulnerability and citizenship: To what extent is education a protective mechanism for children with disabilities in countries affected by conflict? Chapter 10 In Singal, N. (Ed.), Disability, poverty and education. Oxford: RoutledgeGoogle Scholar
- UN. (1989). Convention on the Rights of the Child. Retrieved from www.ohchr.org/english/law/pdf/crc.pdf.
- UN. (2006). Convention on the Rights of Persons with Disabilities. Retrieved from http://www.un.org/disabilities/default.asp.
- UNA-UK. (2013). Global development goals: Leaving no one behind. London: UNA-UK.Google Scholar
- UNICEF. (2008). Monitoring child disability in developing countries: Results from the multiple indicator cluster surveys. New York: UN.Google Scholar
- UNICEF. (2013). State of the world’s children: Children with disabilities. New York: UNICEF.Google Scholar
- Wickenden, M. (2011). ‘Talk to me as a teenager’: Experiences of friendship for disabled teenagers who have little or no speech. Childhoods Today, 5(1), 1–35.Google Scholar
- World Health Organization. (2010). Community-based rehabilitation guidelines. Geneva: WHO. Retrieved from http://www.who.int/disabilities/cbr/guidelines/en/.
- World Health Organization and UNICEF. (2012). Early childhood development and disability: A discussion paper. Geneva: WHO. Retrieved from http://apps.who.int/iris/bitstream/10665/75355/1/9789241504065_eng.pdf.
- World Health Organization and World Bank. (2011). World report on disability. Geneva: WHO and World Bank. Retrieved from http://www.who.int/disabilities/world_report/2011/en/.