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THE NOTION OF DISABILITY IN THE CONTEXT OF HIV/AIDS IN KWAZULU-NATAL, SOUTH AFRICA

Thesis

submitted in fulfilment with the requirements
for the award of PhD degree and the title Dr. phil.

submitted to the Institute of Rehabilitation at the Faculty of
Philosophy IV, Humboldt University of Berlin, Germany

submitted on 31.01.2008

defended on 18.07.2008 (summa cum laude)

Jill Hanass-Hancock
born in Berlin on 18.07.1972

President of the HU Berlin:Prof. Dr. Dr. hc. Christoph Markschies

Dekan of the Faculty IV:Prof. Dr. Elk Franke 

Gutachter:
1. Prof. Ernst von Kardorff, Humboldt-Universität zu Berlin
2. Prof. Dr. Bernd Overwien, Universität Kassel

„For Tembelihle“

ABSTRACT

This thesis is an attempt to understand the cultural roots of non-medical representations of disability and HIV/AIDS in KwaZulu-Natal. It argues that the way in which people are prone to think about and respond to disability and HIV/AIDS, exposes people with disability to a particularly high risk of infection while simultaneously decreasing access to treatment and care. While unfolding hidden meanings and notions about disability and HIV/AIDS, this thesis analyses both phenomena on a macrocultural, microcultural and individual level.

From a macrocultural perspective it is positioned in a historical context that tries to picture KwaZulu-Natal in its present stage and shows how the phenomena of disability and HIV/AIDS are contextualised in society at large. It reflects on the need for the modern state of South Africa to find an African identity without losing the connection to the modern era in which the HIV/AIDS pandemic has evolved. In this context it tries to show how the phenomenon of disability is just one of many issues that the new South Africa faces and that at the present moment, a tremendous need to overcome access barriers still persists.

From a microcultural perspective notions about womanhood as well as disability and HIV/AIDS affect the way people think about and interact with each other. The effects of gender inequality have been clearly analysed by many previous writers and scientists agree that in KwaZulu-Natal women are still marginalized. While sexes are a matter of fact the identification of disability depends on threshold. This threshold for perceiving a condition as abnormal precedes the interpretation process of abnormalities, and with this disability. Once a condition is recognized as abnormal the personal interpretation or Subjective Theory about the condition determines attributions to it. These Subjective Theories are based on the Social Representations of abnormalities and with this also about disability and HIV/AIDS. These Subjective Theories and Social Representations will be unwrapped in this thesis and juxtaposed with each other. It will be shown that diseases and disabilities can be interpreted as being caused naturally or spiritually. In addition to this the concepts of protection (e.g. ancestors) and pollution (e.g. death) will be explained. The thesis will argue that some of these notions about disability positively affect the interaction with disabled people, while others have a negative effect. The African way of ritual ancestor worship or ´cleansing´ can help to raise the acceptance of a disabled family member. This however depends on the interpretation of the disability. Another interpretation of the condition can have the opposite effect and increase exclusion.

In the context of HIV/AIDS the conceptualisation of disability raises a number of misconceptions that expose people with disability to HIV. As this thesis looks into disability in the context of HIV/AIDS it also inquires into the historical and cultural setting of the epidemic as well as the notion about the disease. It shows that even after 15 years of AIDS education, the disease is still surrounded by myths and contradicting messages are still being sent out from the various sources. It will be shown that the “nationalist/ameliorative” paradigm has received a greater emphasis from the current government in an attempt to find an “African solution” to the pandemic. This has led to a one-sided approach, which focuses on poverty, palliative care, traditional medicine and appropriate nutrition. It will be argued, that while the conceptualisation of an African identity is historically a very important development, in the context of HIV/AIDS it seems to have been something of a “Trojan horse”. This has prevented African leaders from questioning the so-called “African traditions” that have proven to be rather detrimental in the ´fight´ against AIDS.

In this context misconceptions about HIV prevention, causes and treatments, the tabooing of sexuality and a lack of emancipation have, besides other HIV determinants, exposed women, in particular, to abusive situations and HIV. In addition to this, common notions about disability have further complicated the matter. It will be further demonstrated that these notions result in people with disability being very vulnerable to sexual exploitation. Women and girls with disabilities are especially used for sexual purification rituals, are sexually exploited and have less access to prevention and treatment.

In relation to this situation, this thesis discusses three coping strategies on a more individual level. Case studies will show that only the empowered and enlightened individual can develop into a person who can negotiate safer sexual practices.

The thesis concludes with key messages on three social levels emerging from the empirical research as well as from historical and policy analysis. Through this, it attempts to provide some guidance for transformation.

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