Disability and HIV/AIDS: A Key Development Issue

  • Poul Rohleder
  • Leslie Swartz
  • John Philander


Despite the severity of the HIV epidemic globally, and particularly in southern Africa where the epidemic is concentrated (UNAIDS, 2007), persons with disabilities have until recently been generally overlooked with regards HIV prevention and HIV care (Groce, 2003a, 2004, 2005). This is a serious omission, as it is well established that vulnerable groups, such as young women in southern Africa, are most at risk for HIV. Persons with disabilities and particularly youth with disabilities are “among the poorest and most marginalized of all the world’s young people” (Groce, 2003b; p. 3). The majority of persons with disabilities live in the “developing world” (World Bank, 2004), countries which also have some of the largest HIV epidemics in the world.


Disable People Conviction Rate Sexual Abuse Case Disability Activist African Campaign 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



Afterword At the time this book was going to press, new data were released from the Human Sciences Research Council in South Africa from their third national HIV survey (Shisana et al., 2009), which, for the first time, invited survey participants to respond to questions about disabilities including sensory, physical, intellectual, and mental disabilities. Results of the survey mention that persons with disabilities have a higher prevalence rate of HIV (14.1%) compared to the prevalence rate among the general population (10.9%), though the confidence intervals overlapped, and the confidence interval for disabled people was very wide, which suggests a difficulty in accuracy of the estimate. This confirms suspicions that persons with disabilities may be considered at least as at risk as the general population and may even be more at risk for HIV infection than the general population. These data provides us with a suggestive evidence base for further work to be done.


  1. Aids-Free World (2008). Resource Guide: AIDS and Disability (compiled by Myroslava Tataryn), [accessed 14th January 2009]
  2. Bachman, SS, Drainoni, M-L, & Tobias, C (2004). ‘Medicaid managed care, substance abuse treatment, and people with disabilities: Review of the literature’, Health & Social Work, 29(3), 189–196CrossRefGoogle Scholar
  3. Bat-Chava, Y, Martin, D, & Kosciw, JG (2005). ‘Barriers to HIV/AIDS knowledge and prevention among deaf and hard of hearing people’, AIDS Care, 17(5), 623–634PubMedCrossRefGoogle Scholar
  4. Becker, H, Stuifbergen, A, & Tinkle, M (1997). ‘Reproductive health care experiences of women with physical disabilities: A Qualitative study’, Archive of Physical Medicine and Rehabilitation, 78(Suppl 5), S26–S33CrossRefGoogle Scholar
  5. Berman, H, Harris, D, Enright, R, Gilpin, M, Cathers, T, & Bukovy, G (1999). ‘Sexuality and the adolescent with a physical disability: Understandings and misunderstandings’, Issues in Comprehensive Pediatric Nursing, 22, 183–196PubMedCrossRefGoogle Scholar
  6. Birch, DA, Angermeier, LK, & Gentsch, DK (2002). ‘HIV Prevention education for students with mental retardation’, Rural Special Education Quarterly, 21(3), 15–20Google Scholar
  7. Blanchett, WJ (2000). ‘Sexual risk behaviors of young adults with LD and the need for HIV/AIDS education’, Remedial and Special Education, 21(6), 336–345CrossRefGoogle Scholar
  8. Blum, RW, Kelly, A, & Ireland, M (2001). ‘Health-risk behaviors and protective factors among adolescents with mobility impairments and learning and emotional disabilities’, Journal of Adolescent Health, 28(6), 481–490PubMedCrossRefGoogle Scholar
  9. Bratlinger, E (1992). ‘Sexuality education in the secondary special education curriculum: Teachers’ perceptions and concerns’, Teacher Education and Special Education, 15(1), 32–40CrossRefGoogle Scholar
  10. Brown, H, & Turk, V (1994). ‘Sexual abuse in adulthood: Ongoing risks for people with learning disabilities’, Child Abuse Review, 3, 26–35CrossRefGoogle Scholar
  11. Cheng, MM, & Udry, JR (2002). ‘Sexual behaviors of physically disabled adolescents in the United States’, Journal of Adolescent Health, 31(1), 48–58PubMedCrossRefGoogle Scholar
  12. Christian, L, Stinson, J, & Dotson, LA (2002). ‘Staff values regarding the sexual expression of women with developmental disabilities’, Sexuality and Disability, 19(4), 283–291CrossRefGoogle Scholar
  13. Collins, PY, Geller, PA, Miller, S, Toro, P, & Susser, ES (2001). ‘Ourselves, our bodies, our realities: An HIV prevention intervention for women with severe mental illness’, Journal of Urban Health, 78(1), 162–175PubMedCrossRefGoogle Scholar
  14. Cook, JA (2000). ‘Sexuality and people with psychiatric disabilities’, Sexuality and Disability, 18(3), 195–206CrossRefGoogle Scholar
  15. Craft, A (1987). ‘Mental handicap and sexuality: Issues for individuals with a mental handicap, their parents and professionals’, in Craft, A (ed.), Mental handicap and sexuality: Issues and perspectives, pp. 13–33. Kent: CostelloGoogle Scholar
  16. Crossmaker, M (1991). ‘Behind locked doors – Institutional sexual abuse’, Sexuality and Disability, 9(3), 201–219CrossRefGoogle Scholar
  17. Department of Health (2007). HIV and AIDS and STI strategic plan for South Africa, 2007–2011 (Draft 9), Pretoria: Department of Health, [accessed 8th September 2007]Google Scholar
  18. Dickman, BJ, & Roux, AJ (2005). ‘Complainants with learning disabilities in sexual abuse cases: A 10-year review of a psycho-legal project in Cape Town, South Africa’, British Journal of Learning Disabilities, 33, 138–144CrossRefGoogle Scholar
  19. Dickman, B, Roux, A, Manson, S, Douglas, G, & Shabalala, N (2006). ‘How could she possibly manage in court?’ An intervention programme assisting complainants with intellectual disability in sexual cases in the Western Cape, in Watermeyer, B, Swartz, L, Lorenzo, T, Schneider, M, & Priestley, M (eds.), Disability and social change: A South African agenda, pp. 116–133. Cape Town: HSRC PressGoogle Scholar
  20. Elwan, A (1999). Poverty and disability: A survey of the literature. Washington: World Bank, Social Protection Unit, [accessed 24th February 2006]Google Scholar
  21. Emmett, T (2006). ‘Disability, poverty, gender and race’, in Watermeyer, B, Swartz, L, Lorenzo, T, Schneider, M, & Priestley, M (eds.), Disability and social change: A South African agenda, pp. 207–233. Cape Town: HSRC PressGoogle Scholar
  22. Furey, EM, Niesen, JJ, & Strauch, JD (1994). ‘Abuse and neglect of adults with mental retardation in different residential settings’, Behavioral Interventions, 9(4), 199–211CrossRefGoogle Scholar
  23. Getch, YQ, Young, M, & Denny, G (1998). ‘Sexuality education for students who are deaf: Current practices and concerns’, Sexuality and Disability, 16(4), 269–281CrossRefGoogle Scholar
  24. Groce, NE (2003a). Adolescents and youth with disability: Issues and challenges, http// [accessed 14th March 2006]
  25. Groce, NE (2003b). ‘HIV/AIDS and people with disability’, The Lancet, 361, 1401–1402CrossRefGoogle Scholar
  26. Groce, NE (2004). HIV/AIDS and disability: Capturing hidden voices, Report of the World Bank Yale University Global Survey of HIV/AIDS and Disability, Washington: World Bank, [accessed 12th March 2005]Google Scholar
  27. Groce, NE (2005). ‘HIV/AIDS and individuals with disability’, Health and Human Rights, 8(2), 215–224PubMedCrossRefGoogle Scholar
  28. Hanna, WJ, & Rogovsky, B (1991). ‘Women with disabilities: Two handicaps plus’, Disability, Handicap & Society, 6(1), 49–63CrossRefGoogle Scholar
  29. Hassouneh-Phillips, D, & Curry, MA (2002). ‘Abuse of women with disabilities: State of the science’, Rehabilitation Counseling Bulletin, 45(2), 96–104CrossRefGoogle Scholar
  30. Heyman, B, & Huckle, S (1995). ‘Sexuality as a perceived hazard in the lives of adults with learning difficulties’, Disability & Society, 10(2), 139–155CrossRefGoogle Scholar
  31. Howard-Barr, EM, Rienzo, BA, Pigg, RM, Jr, & James, D (2005). ‘Teacher beliefs, professional preparation, and practices regarding exceptional students and sexuality education’, Journal of School Health, 75(3), 99–104PubMedGoogle Scholar
  32. Jackson, AB, & Wadley, V (1999). ‘A multicenter study of women’s self-reported reproductive health after spinal cord injury’, Archive of Physical Medicine and Rehabilitation, 80, 1420–1428CrossRefGoogle Scholar
  33. Joffe, H (1999). Risk and ‘the other’. Cambridge: Cambridge University PressCrossRefGoogle Scholar
  34. Joseph, LLW (2006). ‘The construction of visually impaired adolescent masculinity’, Unpublished masters thesis, University of KwaZulu Natal, Pietermaritzburg, South AfricaGoogle Scholar
  35. Kelly, JA, Murphy, DA, Bahr, GR, Brasfield, TL, Davis, DR, Hauth, MA, Morgan, MG, Stevenson, LY, & Eilers, MK (1992). ‘AIDS/HIV risk behaviour among the chronically mentally ill’, American Journal of Psychiatry, 149(7), 886–889PubMedGoogle Scholar
  36. Kelly, K, Ntlabati, P, Oyosi, S, van der Riet, M, & Parker, W (2002). Making HIV/AIDS our problem: Young people and the development challenge in South Africa. Centre for AIDS Development, Research and Evaluation (CADRE), AIDS our problem.pdf [accessed 12th March 2005]
  37. Li, L, & Ford, JA (1998). ‘Illicit drug use by women with disabilities’, American Journal of Drug and Alcohol Abuse, 24(3), 405–418PubMedCrossRefGoogle Scholar
  38. Marks, D (1999). Disability: Controversial debates and psychosocial issues. London: RoutledgeGoogle Scholar
  39. McCabe, MP (1999). ‘Sexual knowledge, experience and feelings among people with disability’, Sexuality and Disability, 17(2), 157–170CrossRefGoogle Scholar
  40. McCabe, MP, Cummins, RA, & Reid, SB (1994). ‘An empirical study of the sexual abuse of people with intellectual disability’, Sexuality and Disability, 12(4), 297–306CrossRefGoogle Scholar
  41. McCarthy, M (1993). ‘Sexual experiences of women with learning difficulties in long-stay hospitals’, Sexuality and Disability, 11(4), 277–286CrossRefGoogle Scholar
  42. Mgwili, VN, & Watermeyer, B (2006). ‘Physically disabled women and discrimination in reproductive health care: Psychoanalytic reflections’. In Watermeyer, B, Swartz, L, Lorenzo, T, Schneider, M, & Priestley, M (eds.), Disability and social change. A South African agenda, pp. 261–272. Cape Town: HSRC PressGoogle Scholar
  43. Milligan, MS, & Neufeldt, AH (2001). ‘The myth of asexuality: A survey of social and empirical evidence’, Sexuality and Disability, 19(2), 91–109CrossRefGoogle Scholar
  44. Mulindwa, IN (2002). ‘Study on reproductive health and HIV/AIDS among persons with disabilities in Kampala, Katakwi and Rakai districts (knowledge, attitudes and practices)’, Disabled Women’s Network and Resource Organization, [accessed 14th August 2007]
  45. Munthali, A, Mvula, P, & Ali, S (2004). Effective HIV/AIDS and reproductive health information to people with disabilities: A final report. Centre for Social Research: University of Malawi, [accessed 25th June 2005]
  46. Njoki, E, Frantz, J, & Mpofu, R (2007). ‘Health-promotion needs of youth with a spinal cord injury in South Africa’, Disability and Rehabilitation, 29(6), 465–472PubMedCrossRefGoogle Scholar
  47. Nosek, MA, Howland, C, Rintala, DH, Young, ME, & Chanpong, GF (2001). ‘National study of women with physical disabilities: Final report’, Sexuality and Disability, 19(1), 5–39CrossRefGoogle Scholar
  48. Parritt, S, & O’Callaghan, J (2000). ‘Splitting the difference: An exploratory study of therapists’ work with sexuality, relationships and disability’, Sexual and Relationship Therapy, 15(2), 151–169CrossRefGoogle Scholar
  49. Peinkofer, JR (1994). ‘HIV education for the deaf, a vulnerable minority’, Public Health Reports, 109(3), 390–396PubMedGoogle Scholar
  50. Philander, JH (2007). ‘The development and evaluation of a pilot school-based programme for prevention of HIV/AIDS among visually impaired and blind South African adolescents’, Unpublished doctoral dissertation, Stellenbosch University, Stellenbosch, South AfricaGoogle Scholar
  51. Philander, JH, & Swartz, L (2006). ‘Needs, barriers, and concerns regarding HIV prevention among South Africans with visual impairments: A key informant study’, Journal of Visual Impairment and Blindness, 100, 111–115Google Scholar
  52. Pillay, AL, & Sargent, C (2000). ‘Psycho-legal issues affecting rape survivors with mental retardation’, South African Journal of Psychology, 30(2), 9–13Google Scholar
  53. Potgieter, C, & Khan, G (2005). ‘Sexual self-esteem and body image of South African spinal cord injured adolescents’, Sexuality and Disability, 23(1), 1–20CrossRefGoogle Scholar
  54. Pueschel, SM, & Scola, PS (1988). ‘Parents’ perception of social and sexual functions in adolescents with Down’s syndrome’, Journal of Mental Deficiency Research, 32, 215–220PubMedGoogle Scholar
  55. Rohleder, P (2007). ‘HIV and the “other”’, Psychodynamic Practice, 13(4), 401–412CrossRefGoogle Scholar
  56. Rohleder, P (2008). ‘HIV/AIDS and Disability: An exploration of organizations’ responses to HIV/AIDS as it affects people with disabilities’, Unpublished doctoral dissertation, University of Stellenbosch, South AfricaGoogle Scholar
  57. Rohleder, P, & Swartz, L (2009). ‘Providing sex education to persons with learning disabilities in the era of HIV/AIDS: Tensions between discourses of human rights and restriction’, Journal of Health Psychology, 14(4), 601–610 Google Scholar
  58. Rohleder, P, Braathen, SH, Swartz, L, & Eide, AH (2009). ‘HIV/AIDS and disability in southern Africa: A review of relevant literature’, Disability & Rehabilitation, 31(1), 51–59CrossRefGoogle Scholar
  59. 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 & Development, 33(3), 230–235CrossRefGoogle Scholar
  60. Schneider, M, Claassens, M, Kimmie, Z, Morgan, R, Naiker, S, Roberts, A, & McLaren, P (1999). “We also count”: The extent of moderate and severe reported disability and the nature of the disability experience in South Africa. CASE Disability survey prepared for the Department of Health, Pretoria, [accessed 9th April 2005]
  61. Shakespeare, T (2000). ‘Disabled sexuality: Towards rights and recognition’, Sexuality and Disability, 18(3), 159–166CrossRefGoogle Scholar
  62. Shisana O, Rehle T, Simbayi LC, Zuma K, Jooste S, Pillay-van-Wyk V, Mbelle N, Van Zyl J, Parker W, Zungu NP, Pezi S & the SABSSM III Implementation Team (2009). South African national HIV prevalence, incidence, behaviour and communication survey 2008:A turning tide among teenagers? Cape Town: HSRC PressGoogle Scholar
  63. Sinason, V (1992). Mental handicap and the human condition: New approaches from the Tavistock. London: Free Association BooksGoogle Scholar
  64. Smith, E, Murray, SF, Yousafzai, AK, & Kasonkas, L (2004). ‘Barriers to accessing safe motherhood and reproductive health services: The situation of women with disabilities in Lusaka, Zambia’, Disability and Rehabilitation, 26(2), 121–127PubMedCrossRefGoogle Scholar
  65. Sobsey, D, & Doe, T (1991). ‘Patterns of sexual abuse and assault’, Sexuality and Disability, 9(3), 243–259CrossRefGoogle Scholar
  66. Sobsey, D, Randall, W, & Parrila, RK (1997). ‘Gender differences in abused children with and without disabilities’, Child Abuse & Neglect, 21(8), 707–720CrossRefGoogle Scholar
  67. Sontag, S (1991). Illness as metaphor and AIDS and its metaphors. London: PenguinGoogle Scholar
  68. Statistics South Africa (2005). Census 2001: Prevalence of disability in South Africa. Pretoria: Statistics South Africa, [accessed 9th April 2005]
  69. Sullivan, PM, & Knutson, JF (2000). ‘Maltreatment and disabilities: A population-based epidemiological study’, Child Abuse & Neglect, 24(10), 1257–1273CrossRefGoogle Scholar
  70. Taegtmeyer, M, Hightower, A, Opiyo, W, Mwachiro, L, Henderson, K, Angala, P, Ngare, C, & Marum, E. (2009). A peer-led HIV counselling and testing programme for the deaf in Kenya. Disability and Rehabilitation, 31(6), 508–514PubMedCrossRefGoogle Scholar
  71. Touko, A (2008). About a neglected group in the fight against HIV/AIDS: Sexual behaviour and HIV prevalence among the young deaf population in Cameroon. Paper presented at the XVII International AIDS Conference, Mexico City, August 2008. Available from: [accessed 10th June 2009]
  72. UNAIDS (2007). AIDS epidemic update: December 2007, Geneva: Joint United Nations Programme on HIV/AIDS and World Health Organization. Available from:
  73. Visser, MJ, Schoeman, JB, & Perold, JJ (2004). ‘Evaluation of HIV/AIDS prevention in South African schools’, Journal of Health Psychology, 9(2), 263–280PubMedCrossRefGoogle Scholar
  74. Watermeyer, B (2006). ‘Disability and psychoanalysis’, in Watermeyer, B, Swartz, L, Lorenzo, T, Schneider, M, & Priestley, M (eds.), Disability and social change: A South African agenda, pp. 31–44. Cape Town: HSRC PressGoogle Scholar
  75. Wazakili, M, Mpofu, R, & Devlieger, P (2006). ‘Experiences and perceptions of sexuality and HIV/AIDS among young people with physical disabilities in a South African township: A Case study’, Sexuality and Disability, 24, 77–88CrossRefGoogle Scholar
  76. White, MJ, Rintala, DH, Hart, KA, Young, ME, & Fuhrer, MJ (1992). ‘Sexual activities, concerns and interests of men with spinal cord injury’, American Journal of Physical Medicine & Rehabilitation, 71(4), 225–231CrossRefGoogle Scholar
  77. White, MJ, Rintala, DH, Hart, KA, & Fuhrer, MJ (1993). ‘Sexual activities, concerns and interests of men with spinal cord injury’, American Journal of Physical Medicine & Rehabilitation, 72(6), 372–378CrossRefGoogle Scholar
  78. Yousafzai, A, & Edwards, K (2004). Double burden: A situation analysis of HIV/AIDS and young people with disabilities in Rwanda and Uganda, London: Save the Children, [accessed 12th March 2005]Google Scholar
  79. Yousafzai, AK, Dlamini, PJ, Groce, N, & Wirz, S (2004). ‘Knowledge, personal risk and experiences of HIV/AIDS among people with disabilities in Swaziland’, International Journal of Rehabilitation Research, 27(3), 247–251PubMedCrossRefGoogle Scholar
  80. Yousafzai, AK, Edwards, K, D’Allesandro, C, & Lindström, L (2005). ‘HIV/AIDS information and services: The situation experienced by adolescents with disabilities in Rwanda and Uganda’, Disability and Rehabilitation, 27(22), 1357–1363PubMedCrossRefGoogle Scholar

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© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  1. 1.Department of PsychologyAnglia Ruskin UniversityCambridgeUK

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