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Sexuality and Citizenship for People with Intellectual Disabilities in Lifelong Family Care: Reflections from a South African Setting

  • Callista Kahonde
  • Judith McKenzie
Chapter

Abstract

This chapter is concerned with how family caregivers respond to the sexuality of their adult children with intellectual disability (ID) in the context of the provision of lifelong care. We note that families receive little support in their caring task and that their responses, arising from the responsibility that they feel to protect their seemingly vulnerable disabled family member, are to contain sexuality and to limit or forbid sexual expression. This curtails the sexual rights and full citizenship of adults with ID and raises questions as to how these rights could be addressed with due consideration for the family’s needs. We suggest that the relationship between caregiver and the disabled family member should be the central focus of this discussion within a feminist ethics of care.

References

  1. Aldersey, H. M., Turnbull, A. P., & Turnbull, H. R. (2016). Family support in Kinshasa, Democratic Republic of the Congo. Journal of Policy and Practice in Intellectual Disabilities, 13(1), 23–32.  https://doi.org/10.1111/jppi.12143.CrossRefGoogle Scholar
  2. Anderson, P., & Kitchin, R. (2000). Disability, space and sexuality: Access to family planning services. Social Science and Medicine, 51(8), 1163–1173.CrossRefGoogle Scholar
  3. Aunos, M., & Feldman, M. A. (2002). Attitudes towards sexuality, sterilization and parenting rights of persons with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15, 285–296.  https://doi.org/10.1046/j.1468-3148.2002.00135.x.CrossRefGoogle Scholar
  4. Bleazard, A. V. (2010). Sexuality and intellectual disability: Perspectives of young women with intellectual disability. Unpublished PhD dissertation, Department of Educational Psychology, University of Stellenbosch, Cape Town.Google Scholar
  5. Braddock, D., Emerson, E., Felce, D., & Stancliffe, R. J. (2001). Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia. Mental Retardation & Developmental Disabilities Research Reviews, 7(2), 115–121.  https://doi.org/10.1002/mrdd.1016.CrossRefGoogle Scholar
  6. Brown, R. D., & Pirtle, T. (2008). Beliefs of professional and family caregivers about the sexuality of individuals with intellectual disabilities: Examining beliefs using a Q? Methodology approach. Sex Education, 8(1), 59–75.  https://doi.org/10.1080/14681810701811829.CrossRefGoogle Scholar
  7. Dickman, B. J., Roux, A., Manson, S., Douglas, G., & Shabalala, N. (2006). ‘How could she possibly manage in court?’: An intervention programme assisting complainants with intellectual disabilities in sexual assault cases in the Western Cape. In B. Watermeyer, L. Swartz, M. Schneider, T. Lorenzo, & M. Priestley (Eds.), Disability and social change: A South African agenda (pp. 116–133). Pretoria: HSRC Press.Google Scholar
  8. Dupras, A., & Dionne, H. (2014). The concern of parents regarding the sexuality of their child with a mild intellectual disability. Sexologies, 23(4), e79–e83.  https://doi.org/10.1016/j.sexol.2013.09.002.CrossRefGoogle Scholar
  9. Emmet, T. (2006). Disability, poverty, gender and race. In B. Watermeyer, L. Swartz, M. Schneider, T. Lorenzo, & M. Priestley (Eds.), Disability and social change: A South African agenda (pp. 207–233). Pretoria: HSRC Press.Google Scholar
  10. Enslin, P., & Horsthemke, K. (2004). Can Ubuntu provide a model for citizenship education in African democracies? Comparative Education, 40(4), 545–558.  https://doi.org/10.1080/0305006042000284538.CrossRefGoogle Scholar
  11. Evans, D. S., McGuire, B. E., Healy, E., & Carley, S. N. (2009). Sexuality and personal relationships for people with an intellectual disability. Part II: Staff and family carer perspectives. Journal of Intellectual Disability Research, 53(11), 913–921.  https://doi.org/10.1111/j.1365-2788.2009.01202.x.CrossRefGoogle Scholar
  12. Fitzgerald, C., & Withers, P. (2013). ‘I don’t know what a proper woman means’: What women with intellectual disabilities think about sex, sexuality and themselves. British Journal of Learning Disabilities, 41(1), 5–12.  https://doi.org/10.1111/j.1468-3156.2011.00715.x.CrossRefGoogle Scholar
  13. Foley, S. (2012). The UN convention on the rights of persons with disabilities: A paradigm shift in the sexual empowerment of adults with down syndrome or more sound and fury signifying nothing? Sexuality & Disability, 30, 381–393.  https://doi.org/10.1007/s11195-012-9279-z.CrossRefGoogle Scholar
  14. Foley, S. (2013). Reluctant ‘jailors’ speak out: Parents of adults with down syndrome living in the parental home on how they negotiate the tension between empowering and protecting their intellectually disabled sons and daughters. British Journal of Learning Disabilities, 41(4), 304–311.  https://doi.org/10.1111/j.1468-3156.2012.00758.x.CrossRefGoogle Scholar
  15. Gade, C. B. N. (2012). What is Ubuntu? Different interpretations among South Africans of African descent. South African Journal of Philosophy, 31(3), 484–503.  https://doi.org/10.1080/02580136.2012.10751789.CrossRefGoogle Scholar
  16. Gürol, A., Polat, S., & Oran, T. (2014). Views of mothers having children with intellectual disability regarding sexual education: A qualitative study. Sexuality and Disability, 32(2), 123–133.  https://doi.org/10.1007/s11195-014-9338-8.CrossRefGoogle Scholar
  17. Healy, E., McGuire, B. E., Evans, D. S., & Carley, S. N. (2009). Sexuality and personal relationships for people with an intellectual disability. Part I: Service-user perspectives. Journal of Intellectual Disability Research, 53(11), 905–912.  https://doi.org/10.1111/j.1365-2788.2009.01203.x.CrossRefGoogle Scholar
  18. Held, V. (1993). Feminist morality: Transforming culture, society and politics. Chicago: University of Chicago Press.Google Scholar
  19. Heyman, B., & Huckle, S. (1995). Sexuality as a perceived hazard in the lives of adults with learning difficulties. Disability & Society, 10(2), 139–155.  https://doi.org/10.1080/09687599550023615.CrossRefGoogle Scholar
  20. Kelly, G., Crowley, H., & Hamilton, C. (2009). Rights, sexuality and relationships in Ireland: ‘It’d be nice to be kind of trusted. British Journal of Learning Disabilities, 37(4), 308–315.  https://doi.org/10.1111/j.1468-3156.2009.00587.x.CrossRefGoogle Scholar
  21. Khoza, R. (2006). Let Africa lead: African transformational leadership for 21st century business. Johannesburg: Vezubuntu Publishing.Google Scholar
  22. Kittay, E. F. (2002). When caring is just and justice is caring. In E. F. Kittay & E. K. Feder (Eds.), The subject of care: Feminist perspectives on dependency (pp. 257–277). Oxford: Rowman & Littlefield Publishers.Google Scholar
  23. Kohn, N. A., Blumenthal, J. A., & Campbell, A. T. (2013). Supported decision-making: A viable alternative to guardianship? Penn State Law Review, 117(4). Retrieved from  https://doi.org/10.2139/ssrn.2161115. Accessed 2 June 2016.
  24. Kyzar, K., Turnbull, A., & Summers, J. A. (2012). The relationship of family support to family outcomes: A synthesis of key findings from research on severe disability. Research & Practice for Persons with Severe Disabilities, 37(1), 31–44.CrossRefGoogle Scholar
  25. Lafferty, A., McConkey, R., & Simpson, A. (2012). Reducing the barriers to relationships and sexuality education for persons with intellectual disabilities. Journal of Intellectual Disability, 16(1), 29–43.  https://doi.org/10.1177/1744629512438034.CrossRefGoogle Scholar
  26. Löfgren-Mårtenson, L. (2004). “May I?” About sexuality and love in the new generation with intellectual disabilities. Sexuality & Disability, 22(3), 197–207. Retrieved from https://link.springer.com/article/10.1023/B:SEDI.0000039062.73691.cb. Accessed 7 Dec 2017.
  27. Mahon, R., & Robinson, F. (2011). Feminist ethics and social policy: Towards a new global political economy of care. Vancouver: University of British Columbia Press.Google Scholar
  28. McCarthy, M. (1999). Sexuality and women with learning disabilities. London: Jessica Kingsley Publishers.Google Scholar
  29. McConkey, R. (2005). Fair shares? Supporting families caring for adult persons with intellectual disabilities. Journal of Intellectual Disability Research, 49(8), 600–612.  https://doi.org/10.1111/j.1365-2788.2005.00697.x.CrossRefGoogle Scholar
  30. McKenzie, J. A. (2016). An exploration of an ethics of care in relation to people with intellectual disability and their family caregivers in the Cape Town metropole in South Africa. ALTER – European Journal of Disability Research/Revue EuropÈenne de Recherche sur le Handicap, 10(1), 67–78.  https://doi.org/10.1016/j.alter.2015.12.001.CrossRefGoogle Scholar
  31. McKenzie, J., & McConkey, R. (2015). Caring for adults with intellectual disability: The perspectives of family carers in South Africa. Journal of Applied Research in Intellectual Disabilities, 29(6), 531–541.  https://doi.org/10.1111/jar.12209.CrossRefGoogle Scholar
  32. Mckenzie, J. A., McConkey, R., & Adnams, C. (2013). Intellectual disability in Africa: Implications for research and service development. Disability & Rehabilitation, 35(20), 1750–1755.  https://doi.org/10.3109/09638288.2012.751461.CrossRefGoogle Scholar
  33. Milligan, M. S., & Neufeldt, A. H. (2001). The myth of asexuality: A survey of social and empirical evidence. Sexuality and Disability, 19(2), 91–109.  https://doi.org/10.1023/A:1010621705591.CrossRefGoogle Scholar
  34. Oliver, M., & Barnes, C. (2012). The new politics of disablement. Basingstoke: Palgrave Macmillan.CrossRefGoogle Scholar
  35. Parmenter, T. R. (2001). Intellectual disabilities – Quo Vadis? In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 267–296). Thousand Oaks: Sage.CrossRefGoogle Scholar
  36. Pathare, S., & Shields, L. S. (2012). Supported decision-making for persons with mental illness: A review. Public Health Reviews, 34(2). Retrieved from http://supporteddecisionmaking.com/sites/default/files/pathare_2012.pdf. Accessed 8 Dec 2017.
  37. Pownall, J. D., Jahoda, A., Hastings, R., & Kerr, L. (2011). Sexual understanding and development of young people with intellectual disabilities: Mothers’ perspectives of within-family context. American Journal on Intellectual and Developmental Disabilities, 116(3), 205–219.CrossRefGoogle Scholar
  38. Pownall, J. D., Jahoda, A., & Hastings, R. (2012). Sexuality and sex education of adolescents with intellectual disability: Mothers’ attitudes, experiences, and support needs. Intellectual and Developmental Disabilities, 50(2), 140–154.  https://doi.org/10.1352/1934-9556-50.2.140.CrossRefGoogle Scholar
  39. Robinson, F. (2011). Care ethics and the transnationalization of care: Reflections on autonomy, hegemonic masculinities, and globalisation. In R. Mahon & F. Robinson (Eds.), Feminist ethics and social policy: Towards a new global political economy of care (pp. 127–144). Vancouver: University of British Columbia Press.Google Scholar
  40. Rogers, C. (2010). But it’s not all about the sex: Mothering, normalisation and young learning disabled people. Disability & Society, 25(1), 63–74.  https://doi.org/10.1080/0968759090336336.CrossRefGoogle Scholar
  41. Rojas, S., Haya, I., & Lázaro-Visa, S. (2016). ‘My great hope in life is to have a house, a family and a daughter’: Relationships and sexuality in intellectually disabled people. British Journal of Learning Disabilities, 44(1), 56–62.  https://doi.org/10.1111/bld.12110.CrossRefGoogle Scholar
  42. Shakespeare, T. (2013). Disability rights and wrongs revisited (2nd ed.). New York: Routledge, Taylor & Francis Group.Google Scholar
  43. Shakespeare, T., & Watson, N. (2001). Making the difference: Disability, politics and recognition. In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 546–564). Thousand Oaks: Sage.CrossRefGoogle Scholar
  44. Sullivan, P. M., & Knutson, J. F. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24(10), 1257–1273.  https://doi.org/10.1016/S0145-2134(00)00190-3.CrossRefGoogle Scholar
  45. Tilley, E., Walmsley, J., Earle, S., & Atkinson, D. (2012). ‘The silence is roaring’: Sterilization, reproductive rights and women with intellectual disabilities. Disability & Society, 27(3), 413–426.  https://doi.org/10.1080/09687599.2012.654991.CrossRefGoogle Scholar
  46. Tronto, J. (1993). Moral boundaries: A political argument for an ethic of care. New York: Routledge.Google Scholar
  47. Tronto, J. (2011). A feminist democratic Ethics of care and global care workers: Citizenship and responsibility. In R. Mahon & F. Robinson (Eds.), Feminist ethics and social policy: Towards a new global political economy of care (pp. 162–183). Vancouver: University of British Columbia Press.Google Scholar
  48. United Nations. (2006). Convention on the rights of persons with disabilities. Retrieved from https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. Accessed 7 Dec 2017.
  49. Wang, M., & Brown, R. (2009). Family quality of life: A framework for policy and social service provisions to support families of children with disabilities. Journal of Family Social Work, 12(2), 144–167.  https://doi.org/10.1080/10522150902874842.CrossRefGoogle Scholar
  50. Weeks, J. (1986). Sexuality. London/New York: Routledge.CrossRefGoogle Scholar
  51. World Health Organization. (2006). Defining sexual health: Report of a technical consultation on sexual health, 28–31 January 2002. Geneva: WHO. Retrieved from http://www.who.int/reproductivehealth/publications/sexual_health/defining_sexual_health.pdf. Accessed 7 Dec 2017.

Copyright information

© The Author(s) 2019

Authors and Affiliations

  • Callista Kahonde
    • 1
  • Judith McKenzie
    • 2
  1. 1.Centre for Rehabilitation StudiesStellenbosch UniversityStellenboschSouth Africa
  2. 2.Division of Disability StudiesDepartment of Health and Rehabilitation Sciences, University of Cape TownCape TownSouth Africa

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