SAN JOSE-CAÑAS (SERVICIO DIRECTO)

I will now outline some of the HIV/AIDS issues affecting both disabled and Deaf people in South Africa. South Africa has one of the largest HIV/AIDS epidemics in the world. In 2009 5.6 million people were estimated to be living with HIV/AIDS with 310 000 deaths occurring from HIV/AIDS related causes. In the adult and adolescent population (aged 15-49 years) the HIV/AIDS prevalence is 17.8% with women aged between 25 and 29 disproportionately affected. HIV prevalence in South Africa varies by province with the Western Cape and Northern Cape regions least affected and the Mpumalanga and Kwa-Zulu Natal regions worst

affected. In 2009 the HIV prevalence for the Mpumalanga and Kwa-Zulu Natal regions was 15.4% and 15.8 % respectively (Health Systems Trust, South Africa, 2011).

Historically, the South African government has not dealt optimally with the HIV/AIDS epidemic. The post-apartheid era was characterized by President Thabo Mbeki’s period of ‘AIDS denialism’ during which antiretroviral (ARV) treatment was not made available in the public sector. Mbeki and his government’s minister of health Dr Manto Tshabalala-Msimang implemented a confusing HIV/AIDS policy. Msimang described ARV treatment as toxic and instead supported untested, traditional remedies as adequate treatment for HIV/AIDS. Their stance on HIV/AIDS resulted in large numbers of preventable AIDS related deaths and a range of dire social consequences including an increase in child headed households (Nattrass, 2007).

The post-Mbeki era has seen some positive changes with regard to HIV/AIDS policy in South Africa including a widespread testing and counselling campaign. The National Strategic Plan for South Africa 2007-2011 now acknowledges that people with disabilities are vulnerable to HIV/AIDS (Simbayi & Davids, 2009).

A recent survey conducted by the Human Sciences Research Council (HSRC) in South Africa indicated that disabled people are at risk of HIV/AIDS. This study found that HIV prevalence in disabled people was relatively high (14.1% (Confidence Interval 9.9-19.6%), higher, but not significantly higher than the national average and that disabled people had engaged in risky sexual practices. The prevalence of HIV in the general population is 10.9% (Confidence Interval 10.0% - 11.9%). This survey also found that disabled people did test for HIV/AIDS as much as able bodied people (Simbayi & Davids, 2009). Although the confidence intervals overlap and there is a wide confidence interval for the disabled population, this is the first HIV prevalence

data for disabled people in South Africa (Rohleder, 2010a) and could precede future HIV prevalence studies for disabled populations in the country.

In South Africa it is encouraging to note that there has been an acknowledgement that Deaf and hard of hearing individuals face the same challenges as other disabled people with regard to HIV/AIDS particularly from Non-Governmental Organizations serving the Deaf Community. Non-governmental organizations (NGO’s) serving the Deaf community have responded to the threat of an emerging HIV/AIDS epidemic in South Africa and the vulnerability Deaf and hard of hearing people may face in this regard. These organizations, particularly Sign Language Education and Development (SLED) and the Gay and Lesbian Archives (GALA) have acknowledged the sexual development needs of Deaf and hard of hearing adolescents. The period of adolescence is a critical stage of psychological and sexual development. Adolescents with a disability could negotiate friendships easily but, as Shakespeare (1996) points out, may have difficulty ‘experiencing the intimacies that non-disabled people take for granted’ (as cited in Rogers, 2010, p. 64). For able bodied youth, the period of adolescence may be a period of awakening their sexuality. However for disabled adolescents, there may well be increased anxiety about their disability, resulting in diminished self-esteem (Rogers, 2010).

The SLED group whose history is described later in the thesis produced HIV education materials for Deaf school learners. These materials appear in the form of a booklet entitled ‘Lifeskills, HIV and Education for the Deaf learner’. Figure 1 on the next page is an image from the SLED booklet:

GALA, an organization which is also described in more detail later in the thesis, produced a comic book entitled ‘Are your Rights Respected’ focusing on reproductive rights and sexual diversity issues for Deaf youth. The comic book uses South African Sign Language (SASL) instead of speech bubbles and depicts the story of Deaf friends attending school and discovering their sexuality. Former director of GALA, Dr Ruth Morgan describes the comic book as ‘a ground-breaking attempt to depict real life stories of an often unheard community’ (Morgan, 2006, p. 2). The comic book was launched in Johannesburg, South Africa in 2006 (See Figure 2 below for an extract from the Gay and Lesbian Archives comic book).

Figure 2. Extract from the gay and lesbian archives comic book (p. 1)

Prominent HIV positive South Africa activist, Judge Edwin Cameron spoke at the launch:

‘Deaf people are dying without HIV testing or treatment, family or community support.’ (Cameron, 2006)

Deaf adults and adolescents may struggle with processing information about HIV/AIDS due to special communication needs and a paucity of information about HIV/AIDS available in South African Sign language (SASL) (personal communication with Prof Clare Penn, 2008).

Despite the efforts of these NGO’s, the attitudes of the staff at the schools for Deaf and hard of hearing learners to emerging sexuality and HIV/AIDS risk is unknown. There is also the issue of

the education system in South Africa and the ways in which it may contribute to enhancing or reducing the vulnerability of disabled children to HIV infection. The publication of Education White Paper 6 on special needs education outlined a policy with regard to disability. The document highlighted the lack of basic service provision to disabled people. For example, 17.39% of disabled people in South Africa live in the country’s Eastern Cape region but the province has only 41 schools for disabled learners. The report also identified the impact of racial disparities from the apartheid era on education of disabled children (Soudien & Baxen, 2006). Chapter 3 of the thesis, the methods section, provides a more detailed background of Deaf education in South Africa as a context for the research sites I chose for the study and methods employed in the PhD thesis.