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Nalini Asha Biggs
Disability, Healthcare and Accessibility
Getting the Message Out of the Closet
Nalini Asha Biggs tells us what a Gay, HIV+ and Deaf man from South Africa can teach us about attitude as a resource for change.
CNN recently published a story focusing on a gay, HIV+ and deaf South African man by the name of John Meletse. Human Rights Watch has been training him as an advocate for the various populations his complex identity reflects, and he shared a few stories in this video clip providing a window into his life. “People think disabled people don’t have sex,” he says at the start of the piece. While most watchers might have been intrigued by his status as a deaf man who is openly gay and HIV+ in South Africa, I was more interested, delighted even, that this was the ‘tag-line.’ This is a message - long-time coming - and one that needs to be highlighted.
Deaf activist John Meletse discusses his personal experiences and struggles, and his desire to help others
It’s been almost 10 years since Dr. Nora Groce and Yale University published “Capturing Hidden Voices”, a report on HIV/AIDS and people with disabilities, probably the first internet-disseminated piece of its nature and one that caught the attention of new scholars and advocates, planting the seeds of my own academic path. This report gathered stories and reflections from people all over the world who work in disability-related services and advocacy, finding that this “hidden” population was being hit on multiple levels by this epidemic. This was largely due to societal prejudices and inequalities, making people with disabilities frequently the poorest, least educated and most abused people in their communities worldwide.
A decade later, this latest publication by CNN mirrors the same issues, and is also internet-based, easily accessible and free: people with disabilities are at equal or greater risk of acquiring HIV/AIDS but far less likely to access appropriate information and prevention or treatment. This finding reflects one of the most astounding discrepancies in AIDS prevention and treatment considering that there are over 1 billion people in the world with disabilities and they largely live in the Global South where HIV/AIDS is less of a chronic illness and more of a devastating epidemic.
In the past decade between the online publication of Hidden Voices and CNN’s short segment on John Meleste, there has been a growing interest in what is now a sub-topic HIV/AIDS and Disability (see Hanass-Hancock and Nixon’s 2009 Literature Review noted below). Largely emanating out of South Africa, where there is a combination of higher resources and high prevalence of HIV/AIDS, these publications have similar conclusions. They repeatedly point to attitudes held by communities, healthcare workers and educators that create barriers apart from the communication and physical barriers some people with disabilities experience as a result of their physical, mental or behavioral differences. These studies argue for “accessible” and “appropriate” education and treatment which requires these attitudes to be different, better or disability friendly.
There is also a consistent conclusion that most education/prevention and treatment services are inaccessible for more tangible reasons, such as being too far for the mostly-rural populations (that most people with disabilities live amongst), or lack of Braille-based literature for the Blind, sign language-based instructions on condoms for the Deaf, etc. It is deceptively easy to say build a ramp or teach all the doctors sign language as anyone who has spent time in these contexts knows. These healthcare workers and educators are already working with extremely sparse resources, often with little training or support. While I cringe when people say we don’t even have enough medicine for the non-disabled people! I can understand that dire situations force people to make inhumane choices. But we always have a choice in attitude.
What John Meletse, Dr. Nora Groce and so many others have repeatedly pointed out is that changing “attitudes” costs no money, requires no supplies, and is far more sustainable. It’s a change in attitude about people with disabilities in general, not just in relation to HIV/AIDS and so it is applicable to all contexts. Disabled people have sex, is something that needs to be said, unfortunately, because the prevailing attitude is that they don’t, won’t and can’t.
There is a sizeable amount of research to show that people with disabilities are generally considered to have a different kind of sexuality than normal people (for a fantastic read on this see Rohleder and Swartz, 2009). Somehow the difference of body, brain or behavior that society labels as disability is often perceived to penetrate to one of the deepest definitions of what it means to be human: sexuality; The singular difference of disability must make everything else about that person different, right?
People with disabilities are frequently asked pseudo-rhetorical questions like, "does it still work?” “can you have babies?” or the more insidious ones such as, “how could anyone find her attractive?”
This perceived difference comes in two forms: belief in the individual being hyper- and hypo- sexual. As John Meletse points out, most people have assumed that his sensory difference somehow makes him hyposexual, or as others might call it asexual or even virginal. Researchers have repeatedly documented this belief and the horrific consequence in cultures where having sex with a virgin is believed to cleanse you of STDs, including HIV.Part of changing attitudes, the relatively free and sustainable solution to this discrepancy in HIV/AIDS prevention and treatment is simply stating, people with disabilities have sex. And this is what this CNN piece aims to do, by both highlighting the issue and specifically attacking this fact through the interviews. While academic, peer-reviewed studies seek to create useable data to fuel those in the public health sphere where statistics and “hard data” carry more credibility, this study reveals the subtle underbelly of this issue that is less simple to quantify. I hope to see other insightful pieces on this topic in the future, giving a face and voice (well, hands in this case) to an otherwise invisible problem.
Nalini Asha Biggs is an educational researcher at the University of Oxford and an independent consultant on education for children with disabilities, inclusive HIV/AIDS programming and the sociology of disability in developing countries.
For more resources on this topic see:
Academic articles on this topic:
Bat-Chava, Y., Martin, D., and Kosciw, J. (2005). Barriers to HIV/AIDS knowledge and prevention among deaf and hard of hearing people. AIDS Care, 17(5), 623–634.
Bisol, C. A., Sperb, T. M., and Moreno-Black, G. (2008). Focus Groups With Deaf and Hearing Youths in Brazil: Improving a Questionnaire on Sexual Behavior and HIV/AIDS. Qualitative Health Research, 18, 565.
Brewer, T., Sperb, T., and Bisol, C. (2008). HIV/AIDS knowledge and health-related attitudes and behaviors among deaf and hearing adolescents in southern Brazil. American Annals of the Deaf, 153(4), 349–356.
Collins, P. (2006). Challenges to HIV prevention in psychiatric settings: Perceptions of South African mental health care providers. Social Science and Medicine, 63(4), 979–990.
Crowe, T. (2003). Using focus groups to create culturally appropriate HIV prevention material for the Deaf Community. Qualitative Social Work, 2(3), 289–308.
Enwereji, E., and Enwereji, K. (2008). Disabled persons and HIV/AIDS prevention: A case study of deaf and leprosy persons in Nigeria. East African Journal of Public Heath, 5(2), 55–61.
Gaskins, S. (1999). Special population: HIV/AIDS among the deaf and hard of hearing. J Assoc Nurses AIDS Care, 10(2), 75–8.
Groce, N. (2004) HIV/AIDS & Disability: Capturing Hidden Voices — The World Bank/Yale Global Survey on HIV/AIDS. Washington, DC: The World Bank.
Hanass-Hancock, J, and Nixon, S. (2009). The fields of HIV and disability: past, present and future. Journal of the International AIDS Society, 2(3), 2–38.
Hanass-Hancock, J, and Satande, L. (2010). Deafness and HIV/AIDS: a systematic review of the literature. African Journal of AIDS Research, 9(2), 187–192.
Hanass-Hancock, J. (2009). Interweaving Conceptualizations of Gender and Disability in the Context of Vulnerability to HIV/AIDS in KwaZulu-Natal, South Africa. Sexuality and Disability, 27, 35–47.
Morrow, M., Arunkumar, M., Pearce, E., and Dawson, H. (2007). Fostering disability-inclusive HIV/AIDS programs in northeast India: A participatory study. BMC Public Health, 7(1), 125.
Osowole, O., and Oladepo, O. (2004). Effect of peer education on deaf secondary school students' HIV/AIDS knowledge, attitudes and sexual behaviour. African Journal of Reproductive Health, 4(2), 93.
Peake, S. (2009). Meeting report of the International Policy Dialogue on HIV/AIDS and Disability. Journal of the International AIDS Society, 2(2), 1–10.
Peinkofer, J. (1994). HIV education for the deaf, a vulnerable minority. Public health reports, 109(3), 390.
Rohleder, P., and 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.
Rohleder, P., Braathen, S., Swartz, L., and Eide, A. (2009). HIV/AIDS and disability in Southern Africa: A review of relevant literature. Disability and Rehabilitation, 31(1), 51–59.
Rohleder, P., Swartz, L., and Philander, J. (2009). “Disability and HIV/AIDS: A Key Development Issue” In: M. MacLachlan and L. Swartz, [Eds.], Disability & International Development: Towards Inclusive Global Health, Springer: New York, 137–147.
Taegtmeyer, M., et al. (2009). A peer-led HIV counselling and testing programme for the deaf in Kenya. Disability and Rehabilitation, 31(6), 508–514.
Touko, A., Mboua, C., Tohmuntain, P., and Perrot, A. (2010). Sexual vulnerability and HIV seroprevalence among the deaf and hearing impaired in Cameroon. Journal of the International AIDS Society,13(5).
Woodroffe, T., Gorenflo, D., Meador, H., and Zazove, P. (1998). Knowledge and attitudes about AIDS among deaf and hard of hearing persons. AIDS Care, 10(3), 377–386.***********************************************************************************************************************************************************************
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