Abstract
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.
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Notes
- 1.
We recognise that relationships between parents and children are complex, and the roles and experiences of parents of disabled children are particularly so. In addition, there is evidence that much of the very common abuse (of all types) of disabled children takes place within the home. There is little data to suggest that mothers are implicated in this, thus they are usually their children’s key protectors and advocates (African Child Policy Forum 2010; Save the Children and Handicap International 2011).
References
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
Albrecht, G., & Devleiger, P. (1999). The disability paradox: High quality of life against all odds. Social Science & Medicine, 48, 977–988.
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.
Boyden, J., & Ennew, J. (1997). Children in focus—A manual for participatory research with children. Stockholm: Radda Barnen.
Cavet, J. (1998). Leisure and friendship. In C. Robinson & K. Stalker (Eds.), Growing up with disability (pp. 97–110). London: Jessica Kingsley.
Chataika, T., & McKenzie, J. (2013). Considerations for an African childhood disability studies. In T. Curran & K. Runswick-Cole (Eds.), Disabled children’s childhood studies: Critical approaches in a global context (pp. 152–163). Basingstoke: Palgrave-Macmillan.
Christensen, P., & James, A. (Eds.). (2000). Research with children: Perspectives and practices. London: Routledge Falmer.
Croft, A. (2013). Promoting access to education for disabled children in low-income countries: Do we need to know how many disabled children there are? International Journal of Educational Development, 33, 233–243.
Curran, T., & Runswick-Cole, K. (Eds.). (2013). Disabled children’s childhood studies: Critical approaches in a global context. Basingstoke: Palgrave-Macmillan.
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.
De Sas, K. Z. O., Elphick, J., & Elphick, R. (2014). Standing by themselves: Caregivers’ strategies to ensure the right to education for children with disabilities in Orange Farm, South Africa. Childhood, 21(3), 354–368.
Deal, M. (2007). Aversive disablism: Subtle prejudice toward disabled people. Disability & Society, 22(1), 93–107.
Engelbrecht, P. (2006). The implementation of inclusive education in South Africa after Ten years of democracy. European Journal of Psychology of Education, 21(3), 253–264.
Farmer, P. (1996). On suffering and structural violence: A view from below. Daedalus, 125(1), 261–283.
Feldman, M. A., Battin, S. M., Shaw, O. A., & Luckasson, R. (2013). Inclusion of children with disabilities in mainstream child development research. Disability & Society, 28(7), 997–1011.
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.
Fujiura, G. T., & Yamaki, K. (2000). Trends in demography of childhood poverty and disability. Exceptional Children, 66(2), 112–130.
Goodley, D., & Runswick-Cole, K. (2011). The violence of disablism. Sociology of Health & Illness, 33(4), 602–617.
Grech, S. (2013). Disability, childhood and poverty: Critical perspectives on Guatemala. In T. Curran & K. Runswick-Cole (Eds.), Disabled children’s childhood studies: Critical approaches in a global context (pp. 89–104). Basingstoke: Palgrave-Macmillan.
Groce, N., Kett, M., Lang, R., & Trani, J. (2011). Disability and poverty: The need for a more nuanced understanding of implications for development policy and practice. Third World Quarterly, 32(8), 1493–1513.
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.
Hart, J. (2008). Children’s participation and international development: Attending to the political. The International Journal of Children’s Rights, 16, 407–418.
Human Rights Watch. (2010). Barriers to full realization of humans rights for women and children with disabilities. New York: Human Rights Watch.
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.
James, A., Jenks, C., & Prout, A. (1998). Theorizing childhood. Cambridge: Polity Press.
Jans, M. (2004). Children as citizens. Towards a contemporary notion of participation. Childhood, 11(1), 27–44.
Kembhavi, G., & Wirz, S. (2009). Engaging adolescents with disabilities in research. ALTER. European Journal of Disability Research., 3, 286–296.
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.
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.
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.
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.
Mackenzie, C., & Leach Scully, J. (2007). Moral imagination, disability and embodiment. Journal of Applied Philosophy, 24(4), 335–351.
Mahon, A., Glendinning, C., Clarke, K., & Craig, G. (1996). Researching children: Methods and ethics. Children & Society, 10, 145–154.
Maulik, P., & Darmstadt, G. (2007). Childhood disability in low and middle income countries: Overview of screening, prevention, services, legislation, and epidemiology. Pediatrics, 120, 1–55.
Meekosha, H., & Soldatic, K. (2011). Human rights and the Global South: The case of disability. Third World Quarterly, 32(8), 1383–1398.
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
Morris, J. (2003). Including all children: finding out about the experiences of children with communication and/or cognitive impairments. Children & Society, 17(5), 337–348.
Paterson, K., & Hughes, B. (1999). Disability studies and phenomenology: The carnal politics of everyday life. Disability & Society, 14(5), 597–610.
Richard, B. (2014). Families well-being and inclusion: Rethinking priorities for children with cognitive disabilities in Ladakh. Childhood, 21(3), 308–323.
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.
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.
Singh, V., & Ghai, A. (2009). Notions of self: Lived realities of children with disabilities. Disability & Society, 24(2), 129–145.
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.
Stoecklin, D. (2013). Theories of action in the field of child participation: In search of explicit frameworks. Childhood, 20, 443.
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.
Tisdall, E. (2013). The transformation of participation? Exploring the potential of ‘Transformative Participant’ for theory and practice around children and young People’s participation. Global Studies of Childhood, 3(2), 183–193.
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: Routledge
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.
UNICEF. (2008). Monitoring child disability in developing countries: Results from the multiple indicator cluster surveys. New York: UN.
UNICEF. (2013). State of the world’s children: Children with disabilities. New York: UNICEF.
Watson, N. (2002). Well I know this is going to sound very strange to You but I don’t see myself as a disabled person: Identity and disability. Disability & Society, 17(5), 509–527.
White, S., & Choudhury, S. (2007). The politics of child participation in international development: The dilemma of agency. The European Journal of Development Research, 19(4), 529–550.
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.
Wickenden, M., & Kembhavi-Tam, G. (2014). Ask us too! Doing participatory research with disabled children in the global south. Childhood, 21(3), 400–417.
Wolbring, G., Mackay, R., Rybchinski, T., & Noga, J. (2013). Disabled people and the post-2015 development goal agenda through a disability studies lens. Sustainability, 5, 4152–4182.
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/.
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Wickenden, M., Elphick, J. (2016). Don’t Forget Us, We Are Here Too! Listening to Disabled Children and Their Families Living in Poverty. In: Grech, S., Soldatic, K. (eds) Disability in the Global South. International Perspectives on Social Policy, Administration, and Practice. Springer, Cham. https://doi.org/10.1007/978-3-319-42488-0_11
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