Invisible - the notion of disability in the context of HIV, AIDS in Kwazulu-Natal, South Africa [Elektronische Ressource] / Jill Hanass-Hancock

Jill Hanass-Hancock

Sujets

• Gesundheit

Informations

• Publié par: humboldt-universitat_zu_berlin
• Publié le: 01 janvier 2008
• Nombre de lectures: 40
• Langue: English
• Poids de l'ouvrage: 5 Mo

Extrait

- INVISIBLE -
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

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










„For Tembelihle“ CONTENT



DECLARATION VI

ACKNOWLEDGEMNTS VI

ABSTRACT VIII

ABBREVIATIONS XI




PART I


INTRODUCTION TO THIS STUDY




PART II


CONCEPTS OF DISEASE AND DISABILITY
IN KWAZULU-NATAL




PART III


DISABILITY AND HIV/AIDS
IN KWAZULU-NATAL








IPART I
1 INTRODUCTION 1
1.1 FOREWORD 1
1.2 PURPOSE OF THIS STUDY 2
1.3 STRUCTURE OF THE THESIS 4
2 DISCUSSION OF PREVIOUS RESEARCH 6
2.1 DISEASE, DISABILITY AND CULTURE 7
2.1.1 DISABILITY STUDIES 7
2.1.2 MEDICAL ANTHROPOLOGY AND SOCIAL PSYCHOLOGY 17
2.1.3 ETHNOLOGICAL STUDIES ON DISEASE IN ZULU CULTURE 30
2.2 SEXUALITY, GENDER AND HIV/AIDS 33
2.2.1 STUDIES ON HIV/AIDS 33
2.2.2 SEXUAL CULTURE AND GENDER STUDIES 37
2.2.3 STUDIES THAT COMBINE DISABILITY AND HIV/AIDS 42
3 RESEARCH DESIGN AND METHODOLOGY 45
3.1 APPROACH TO THE STUDY 45
3.1.1 RESEARCH APPROACH 45
3.1.2 RESEACONTEXT 47
3.2 STUDY SAMPLE 49
3.2.1 STRUCTURE OF THE RESEARCH PROJECT 49
3.2.2 PROFILE OF THE PARTICIPANTS 52
3.3 METHODOLOGY 55
3.3.1 METHOD FOR DATA COLLECTION 55
3.3.2 DATA ANALYSIS 61


IIPART II

4 DISABILITY IN KWAZULU-NATAL 65
4.1 AN OVERVIEW OF KWAZULU-NATAL 65
4.1.1 AN INTRODUCTION TO SOUTH AFRICA AND KWAZULU-NATAL 65
4.1.2 CULTURAL HERITAGE - FINDING ONE’S IDENTITY 74
4.2 MARGINALISED GROUPS 80
4.2.1 GENDER RELATIONS - THE SECOND CLASS 80
4.2.2 DISABILITIES - PEOPLE IN THE PERIPHERY 85
4.3 CONCLUSIONS 95


5 CONCEPTUALISING DISEASE AND DISABILITY 97
5.1 A CONCEPT OF HEALTH, DISEASE AND DISABILITY 97
5.1.1 THE SOCIAL AND CULTURAL DIMENSION OF BEING DIFFERENT 97
5.1.2 SOCIAL REPRESENTATIONS AND SUBJECTIVE THEORIES 105
5.1.3 ´WESTERN´ VERSUS ´TRADITIONAL´ CONCEPTS 109
5.2 THE NOTION OF DISEASE AND DISABILITY IN KWAZULU-NATAL 114
5.2.1 THE NOTION OF NATURAL CAUSES 114
5.2.2 THE CONCEPT OF PROTECTION AND VULNERABILITY 121
5.2.3 THE NOTION OF SPIRITUAL CAUSES 127
5.2.4 THE SOCIAL CONCEPT OF DISABILITY 133
5.3 CONCLUSIONS 136

IIIPART III
6 THE CONTEXT OF HIV/AIDS 138
6.1 HIV/AIDS IN SOUTH AFRICA 138
6.1.1 FACTS AND NUMBERS 138
6.1.2 HIV/AIDS DETERMINANTS 146
6.1.3 A SHORT HISTORY OF HIV/AIDS POLICY MAKING 148
6.1.4 MISSED OPPORTUNITIES 150
6.2 THE CONCEPTUALISATION OF HIV/AIDS 152
6.2.1 GENDERING OF HIV/AIDS 153
6.2.2 PAST AND PRESENT MYTHS 155
6.3 A JOURNEY INTO SEXUAL CULTURE 157
6.3.1 THE NOTION OF WOMANHOOD AND SEXUALITY 157
6.3.2 THE “DIS-CULTURE” OF CONDOMS 161
6.3.3 SOUGHT AFTER VIRGINS 163
6.4 CONCLUSIONS 166
7 DISABILITY IN THE CONTEXT OF HIV/AIDS 168
7.1 INTERVENING CONDITION – DISABILITY 168
7.1.1 TEENAGERS IN KWAZULU-NATAL 168
7.1.2 COMMON MISCONCEPTIONS 171
7.1.3 ´LOVE´ AND PROTECTION 174
7.2 CONSEQUENCES AND PROTECTIVE STRATEGIES 176
7.2.1 WITHOUT A TRACE – DENIAL OF SEXUAL ACTIVITY 176
7.2.2 THE AWAKENING TALK – SEXUAL ENLIGHTENMENT 183
7.3 THE INVISIBLE 188
7.3.1 PEOPLE WITH DISABILITY AND HIV/AIDS 188
7.3.2 NEGOTIATING SEXUAL RELATIONSHIPS 191
7.4 CONCLUSIONS 193
IV8 SUMMARY - PROSPECTS FOR TRANSFORMATION 198

9 FOR THEMBELIHLE - A PERSONAL REFLECTION 209

10 LITERATURE 211

1 APENDICES 23




LIST OF APPENDICES

Appendix 1 Definitions and Zulu Vocabulary
Appendix 2 Map of South Africa
Appendix 3 Map of KwaZulu-Natal
Appendix 4 History of AIDS policy making in South Africa
Appendix 5 HIV prevalence rates of different studies conducted in South
Africa
Appendix 6 Data from the South African Department of Health Study 2006
Appendix 7 Mortality and causes of death in South Africa
Appendix 8a HIV/AIDS burden on hospitals as a portion of illness in health
facilities
Appendix 8b HIV/AIDS burden on hospitals in relation to HIV prevalence
Appendix 9 The HI-virus
Appendix 10a Stages of AIDS (table 1)
Appendix 10b Stages of AIDS (table 2)
Appendix 11 Neubert and Cloerkes model of reactions to abnormalities
Appendix 12 Analytical domains in the experience of health and illness
Appendix 13 Health seeking behaviour sorted in biomedical terms
Appendix 14 Newspaper article “Witch burning”
Appendix 15 Newspaper article “Severely disabled girl raped”
Appendix 16 Research results from ranking exercise


VDECLARATION

English:

In accordance with the regulations of the Humboldt University Berlin, I, Jill Hanass-
Hancock, declare that this PHD thesis entitled: ´-Invisible- The notion of disability in
the context of HIV/AIDS in KwaZulu-Natal, South Africa´ is my original research. It
has not been previously submitted for any degree, and is not being concurrently
presented in candidature at any other University. All sources of literature have been
duly acknowledged.


German:

Hiermit erkläre ich, dass meine Dissertation ´-Invisible- The notion of disability in the
context of HIV/AIDS in KwaZulu-Natal, South Africa´ meine persönliche Arbeit
darstellt und in Übereinstimmung mit den Regulationen zur Erlangung des
akademischen Grades ´Dr. phil.´ geschrieben wurden. Diese Dissertation wird
erstmalig eingereicht. Alle von mir benutzten Quellen sind gekennzeichnet.
Außerdem wurde die Dissertation in Englisch vorgelegt, damit auch die Menschen,
die mich während meiner Forschungen unterstützt haben, von meiner Arbeit Nutzen
ziehen können.





Date 31.01.2008 Jill Hanass-Hancock






VIACKNOWLEDGEMENTS

As my research has been supported by many people I would like to take this
opportunity to thank all those people who have contributed towards my research in
some way:

My supervisors, Prof. Erst von Kardorff und Dr. Bernd Overwien,
for their support and encouragement.

My volunteer mentor Tim Quinlan from the HEARD project at the University of
Natal, for his guidance and support.

DPSA and DICAG,
for facilitating my research and assisting me in finding suitable interview partners.
Here I would like to mention in particular: Dudu Makoena, Madaline Tsuputse and
Sibongile.

All my respondents across KwaZulu-Natal,
who never tired of sharing their experiences with me.

My mother Veronika Hanass and my mother in-law Cheryl Hancock,
for assisting me in my personal life particularly for looking after my two children.

Iris Barrett,
for patiently transcribing my interviews.

Ivan Boniaszczuk, Nichola Brouckaert, Alain Tschudin, Bradley Hancock and
Mirella Schwinge for their encouragement and support while editing my thesis.

My husband Bradley Hancock and my two children Tristan and Josh Hancock,
for their patience and support during the last three years.




VIIABSTRACT

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 Afr