Triple disadvantage: disability and gender sensitive Prevention of HIV and aids through the eyes of young People with physical disabilities

  • Margaret Wazakili
  • Ratie Mpofu
  • Patrick Devlieger

Abstract

Introduction:
This paper explores the different ways in which disabled girls and young women are disadvantaged and marginalised in expressing sexuality and accessing HIV and AIDS prevention and care services. Disabled young men tend to have greater access to basic information on the subject because their families allow them to freely socialise with peers and learn from them. Yet for cultural and other reasons, disabled young women are prevented from doing the same. Consequently, this group lacks vital information on how to express sexuality and to protect themselves from acquiring HIV infection.

Methods:
A qualitative case study design was chosen as the appropriate means for achieving the aim of this study. Sixteen young people with varying types of physical disabilities, aged 15-24 years participated in individual semi-structured interviews and three focus group discussions of 5-8 participants each. Consent procedures were followed. Demographic data of each participant, in-depth interviews and focus group discussions were audio-taped and transcribed verbatim. A thematic content analysis was conducted using the Atlas.ti computer package for analysing qualitative data. Textual features of Atlas.ti were used to sort the data through coding for common meaning. Contextual features were used to group the codes into broad content categories, through which the
main themes were generated.

Results:
This study has shown that gender plays a crucial role in the way disabled young people experience sexuality and HIV and AIDS. While all disabled young people have limited access to sexuality education and HIV and AIDS prevention services, disabled young females are more disadvantaged, as they are confined to their parents' homes, are not allowed to express their sexuality freely and are forced to take contraceptives. Although disabled young men are allowed some freedom, they too remain misinformed about basic facts on sexuality and HIV and AIDS.

Discussion:
It is clear that all disabled young people are at risk of contracting HIV infection and have
limited access to treatment and care, yet gender related factors increase the risk for disabled females. This group is acutely aware of the ever present risk of rape and yet their mothers' response to such a threat is provision of contraceptives to prevent pregnancy, rather than steps to prevent rape. In the interest of cultural norms, disabled young females in this study were overprotected and prevented from socializing and obtaining sexuality information from peers. Meanwhile, it was shown that some disabled young men feel that the answer to any erection is to have sex, while female participants express the frustration and difficulty of negotiating safe sex. Obviously, it would be difficult to negotiate safe sex with men who believe there is no other way of dealing with an erection, but sex. It is conceivable then that men who uphold such beliefs would also be inclined to force or rape partners who resist or attempt to negotiate safe sex. Similarly, it was revealed that some disabled young men are allowed to have sex outside marriage, but not to father a child as culture prohibits sex and child bearing out of wedlock. Yet disabled females are not only told to abstain from sex until they get married, they are also started on contraceptives without their consent or proper education on the subject. This prohibition is not accompanied by appropriate education about responsible sexual behaviour and prevention of pregnancy. Consequently, disabled girls remain silent about their sexual encounters for fear of disapproval by parents. Parents also anticipate that their disabled children would be having sex anyway, hence their concern to prevent pregnancy with no matching concern for prevention of sexually transmitted infections,including HIV.


Conclusion:
This study has revealed that disabled young men and women have different challenges in their experience of sexuality and HIV and AIDS. Disabled young women are disadvantaged by being confined to their parent's homes, not allowed to express their sexuality freely, having forced contraceptives and would probably be shunned if they were to become HIV positive. It is clear that some parents expect their disabled daughters to be raped in spite of the prevailing belief that these young people are asexual. Parents feel helpless as they appear unable to protect disabled females from being raped or to report such rape, which increases the risk of contracting HIV infection. Although disabled young men are allowed some freedom to express their sexuality and to access  information on the subject, they remain misinformed about basic facts on the same.
Participants in this study were not aware of any formal or informal sexuality and HIV and AIDS programmes specifically targeting disabled young people in Nyanga. There is a need for government and other AIDS service organizations to target all members of society, but specifically disabled young women and their parents.

 

References

Academy for Educational Development (AED). (2004).

Focus group discussions. Available at: http://www2.edc.org/NTP/focusgroups.htm [Accessed 28.07.04].

Department for International Development (DFID). (2006). Disability, Poverty and Development. London. Digiulio, G.: Sexuality and people living with physical or developmental disabilities:a review of key issues.

Can. J. Hum. Sex. 12(1), 53-68 (2003) ElectronicCitation.file://EPublished%20article filesPubli shed%20article.

Groce, N.E. (2004b). HIV/AIDS and disability: Capturing hidden voices. The World Bank/Yale University. Available at http://cira.med.yale.edu/globalsurvey [Accessed 04.09.06].

Hanass-Hancock, J. (2009). Interweaving conceptualisation of gender and disability in the context of vulnerability to HIV/AIDS in Kwazulu-Natal, South Africa. Sexuality and Disability, 27: 35-47.

Howland, C.A., and Rintala, D.H. (2001). Dating behaviours of women with physical disabilities. Sexuality and Disability, 19: 41-70.

Kelly K, Ntlabati P, Oyosi S, van der Riet M, Parker W: Making HIV/AIDS our problem, young people and the development challenge in South Africa. London Save the children (2002) Available at http://www.cadre.org.za/ [Accessed 04.09.05].

Marshal, C., and Rossman, G.B. (1994). Designing qualitative research. International Educational and Professional Publisher, Thousand Oaks London: Sage Publications.

Miles, M.B., Huberman, A.M. (1991). Qualitative data analysis: A sourcebook of new methods. Sage Publications The International Professional Publishers, London

Nosek, M.A. Howland, B.A., Rintala, D.H., Young, M.E. and Chanpong, M.S. (2001a). National study of women with physical disabilities: Final Report. Sexuality and Disability. 19 (1): 5-39.

Nosek, M.A., Foley, C.C., Hughes, R.B., and Howland, C.A. (2001b). Vulnerabilities for abuse among women with disabilities. Sexuality and Disability, 19 (3): 177-189.

Nosek, M.A., Howland, C. and Hughes R. (2001c). The Investigation of abuse and Women with Disabilities. Sexuality and Disability, 7 (4): 477-499.

Rao, T.S.S. (2002). Sexual practice: The Indian context.

Andra Pradesh Journal of Psychology Medicine 6(1):45-47.

Siedman, I.E. (1998). Interviewing in qualitative research.

New York: Teachers College Press.

Singh, Sansar, and Sharma, 2005 Singh, R., and

Sharma, S.C. (2005). Sexuality and women with spinal cord injury. Sexuality and Disability, 23(1): 21-33.

Smith, D.L. (2008). Disability, gender and intimate partner violence: relationships from the behavioural risk factor surveillance system. Sexuality and Disability 29(1), 15-28.

Statistics South Africa, 2001). Statistics South Africa: Census. Pretoria, South Africa. Available at http://www.statssa.gov.za/ [Accessed 12.03.2005] (2001)

Wazakili, M. (2007). Paradox of risk: sexuality and HIV and AIDS among young people with physical disabilities in Nyanga, South Africa: Department of Physiotherapy, the University of the Western Cape; Dissertation: 2007. p 220.

Wazakili, Mpofu, Devlieger, Wazakili M, Mpofu R,

Devlieger P. (2006). Experiences and perceptions of sexuality and HIV and AIDS among young people with physical disabilities in a South African township: a case study. Sexuality and Disability. 24(2), 77-88.

Section
Articles