Don’t Forget Us, We Are Here Too! Listening to Disabled Children and Their Families Living in Poverty

  • Mary WickendenEmail author
  • Jean Elphick
Part of the International Perspectives on Social Policy, Administration, and Practice book series (IPSPAP)


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.


Children Disability Families South Asia Uganda South Africa Family support systems Childhood development Disability intervention Participatory research and practice 


  1. African Child Policy Forum. (2010). Breaking the Silence: Violence Against Children with Disabilities in Africa. Addis Ababa: The African Child Policy Forum. Retrieved from
  2. Albrecht, G., & Devleiger, P. (1999). The disability paradox: High quality of life against all odds. Social Science & Medicine, 48, 977–988.CrossRefGoogle Scholar
  3. 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
  4. Boyden, J., & Ennew, J. (1997). Children in focus—A manual for participatory research with children. Stockholm: Radda Barnen.Google Scholar
  5. Cavet, J. (1998). Leisure and friendship. In C. Robinson & K. Stalker (Eds.), Growing up with disability (pp. 97–110). London: Jessica Kingsley.Google Scholar
  6. 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.CrossRefGoogle Scholar
  7. Christensen, P., & James, A. (Eds.). (2000). Research with children: Perspectives and practices. London: Routledge Falmer.Google Scholar
  8. 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.CrossRefGoogle Scholar
  9. Curran, T., & Runswick-Cole, K. (Eds.). (2013). Disabled children’s childhood studies: Critical approaches in a global context. Basingstoke: Palgrave-Macmillan.Google Scholar
  10. 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
  11. 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.CrossRefGoogle Scholar
  12. Deal, M. (2007). Aversive disablism: Subtle prejudice toward disabled people. Disability & Society, 22(1), 93–107.CrossRefGoogle Scholar
  13. 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.CrossRefGoogle Scholar
  14. Farmer, P. (1996). On suffering and structural violence: A view from below. Daedalus, 125(1), 261–283.Google Scholar
  15. 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.CrossRefGoogle Scholar
  16. 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
  17. Fujiura, G. T., & Yamaki, K. (2000). Trends in demography of childhood poverty and disability. Exceptional Children, 66(2), 112–130.Google Scholar
  18. Goodley, D., & Runswick-Cole, K. (2011). The violence of disablism. Sociology of Health & Illness, 33(4), 602–617.CrossRefGoogle Scholar
  19. 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.CrossRefGoogle Scholar
  20. 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.CrossRefGoogle Scholar
  21. 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
  22. Hart, J. (2008). Children’s participation and international development: Attending to the political. The International Journal of Children’s Rights, 16, 407–418.CrossRefGoogle Scholar
  23. Human Rights Watch. (2010). Barriers to full realization of humans rights for women and children with disabilities. New York: Human Rights Watch.Google Scholar
  24. 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
  25. James, A., Jenks, C., & Prout, A. (1998). Theorizing childhood. Cambridge: Polity Press.Google Scholar
  26. Jans, M. (2004). Children as citizens. Towards a contemporary notion of participation. Childhood, 11(1), 27–44.CrossRefGoogle Scholar
  27. Kembhavi, G., & Wirz, S. (2009). Engaging adolescents with disabilities in research. ALTER. European Journal of Disability Research., 3, 286–296.CrossRefGoogle Scholar
  28. 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
  29. 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
  30. 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
  31. 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
  32. Mackenzie, C., & Leach Scully, J. (2007). Moral imagination, disability and embodiment. Journal of Applied Philosophy, 24(4), 335–351.CrossRefGoogle Scholar
  33. Mahon, A., Glendinning, C., Clarke, K., & Craig, G. (1996). Researching children: Methods and ethics. Children & Society, 10, 145–154.CrossRefGoogle Scholar
  34. 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.CrossRefGoogle Scholar
  35. Meekosha, H., & Soldatic, K. (2011). Human rights and the Global South: The case of disability. Third World Quarterly, 32(8), 1383–1398.CrossRefGoogle Scholar
  36. Mont, D. (2014). Childhood disability and poverty. LCD Working Paper 25. Leonard Cheshire Disability. Retrieved from
  37. 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.CrossRefGoogle Scholar
  38. Paterson, K., & Hughes, B. (1999). Disability studies and phenomenology: The carnal politics of everyday life. Disability & Society, 14(5), 597–610.CrossRefGoogle Scholar
  39. Richard, B. (2014). Families well-being and inclusion: Rethinking priorities for children with cognitive disabilities in Ladakh. Childhood, 21(3), 308–323.CrossRefGoogle Scholar
  40. 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
  41. Save the Children & Handicap International. (2011). Out from the shadows. Sexual violence against children with disabilities. London: Save the Children UK. Retrieved from
  42. 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
  43. Singh, V., & Ghai, A. (2009). Notions of self: Lived realities of children with disabilities. Disability & Society, 24(2), 129–145.CrossRefGoogle Scholar
  44. 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
  45. Stoecklin, D. (2013). Theories of action in the field of child participation: In search of explicit frameworks. Childhood, 20, 443.CrossRefGoogle Scholar
  46. 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
  47. 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.CrossRefGoogle Scholar
  48. 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
  49. UN. (1989). Convention on the Rights of the Child. Retrieved from
  50. UN. (2006). Convention on the Rights of Persons with Disabilities. Retrieved from
  51. UNA-UK. (2013). Global development goals: Leaving no one behind. London: UNA-UK.Google Scholar
  52. UNICEF. (2008). Monitoring child disability in developing countries: Results from the multiple indicator cluster surveys. New York: UN.Google Scholar
  53. UNICEF. (2013). State of the world’s children: Children with disabilities. New York: UNICEF.Google Scholar
  54. 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.CrossRefGoogle Scholar
  55. 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.CrossRefGoogle Scholar
  56. 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
  57. Wickenden, M., & Kembhavi-Tam, G. (2014). Ask us too! Doing participatory research with disabled children in the global south. Childhood, 21(3), 400–417.CrossRefGoogle Scholar
  58. 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.CrossRefGoogle Scholar
  59. World Health Organization. (2010). Community-based rehabilitation guidelines. Geneva: WHO. Retrieved from
  60. World Health Organization and UNICEF. (2012). Early childhood development and disability: A discussion paper. Geneva: WHO. Retrieved from
  61. World Health Organization and World Bank. (2011). World report on disability. Geneva: WHO and World Bank. Retrieved from

Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  1. 1.University College LondonLondonUK
  2. 2.Afrika TikkunDurbanSouth Africa

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