A SELECTION OF LEGAL ISSUES RELATING TO PERSONS LIVING WITH ALBINISM by

372 Pages·2016·3.68 MB·English

A SELECTION OF LEGAL ISSUES RELATING TO PERSONS LIVING
WITH ALBINISM

by
MPHOENG MAUREEN MSWELA

submitted in accordance with the requirements for the degree

of

DOCTOR OF LAWS

at the

UNIVERSITY OF SOUTH AFRICA

PROMOTOR: PROF MN SLABBERT

28 February 2016
Declaration Student Number: 44630360

I, Mphoeng Maureen Mswela, declare that A selection of legal issues relating to
persons living with albinism is my own work and that all the sources that I have used
or cited have been indicated and acknowledged by means of complete references.

th
………………………….......... 28 of February 2016

Mphoeng Maureen Mswela DATE

i
DEDICATION
This thesis is dedicated to my sister, Ntombizodwa Mswela, who has been so
supportive of my work and who has shared the many uncertainties, challenges and
sacrifices in completing this thesis. I am indebted to her for her tireless assistance in
taking care of my daughter and son throughout the period that I worked on the
thesis. She never complained, even when my work continued deep into the night on
a number of occasions. Words cannot express my gratitude for her help, support and
concern. I was able to complete the thesis without worrying about my children
because of her. I will always value her presence and love. My daughter,
Tanyaradzwa Victoria Mzenda, has grown into an amazing five-year old and my son
Atipatose Mzenda has also grown startlingly into a one year and four month old
toddler, despite the many hours that their mum spent away from them because of
this thesis.

ii
ACKNOWLEDGEMENTS
The completion of this doctoral thesis was possible with the support of a number of
people. I would like to thank all the people who contributed in some way to this
thesis.
 Firstly I would like to thank God, for guiding me on this satisfying academic
journey.
 It is with immense gratitude that I acknowledge the support and guidance of my
promoter, Professor Melodie Slabbert, during the completion of this thesis, and
also for providing the type of interaction that has made the development of my
personal and professional skills possible. She was at all times available to clarify
any uncertainties, despite her busy schedule. She gave me the confidence to
freely express my thoughts and supported my attendance at various conferences
related to my research, while also engaging me with novel ideas and constantly
requiring the highest standards. Thank you, Melodie, for all your assistance and
support. It was a privilege being your student and to learn from your research
expertise.
 I am very thankful and truly indebted to Ms Nomasonto Mazibuko, Director of the
Albinism Society of South Africa and People with Albinism and their families, who
supported my work in various respects during the research and writing phase of
this thesis. I honour you all for the knowledge that I gained from you and your
experience with regard to living with albinism, which you so gladly shared with
me.
 Library resources were central to this study. It would have been impossible to
complete this thesis without the UNISA library. I would like to thank all the library
staff for their support during these years, particularly in assisting me to keep
abreast with the most recent publications on albinism studies. I would like to
specifically thank the former law librarian, Mr Bopape, for his assistance in finding
relevant legal and other sources relevant to my topic.
 I am very grateful to Mariette Postma for her expertise and assistance in the
editing of the thesis.
iii
 I am also grateful to Jennifer Snyman for her elegant and professional service in
the editing of this thesis. Your phenomenal attention to detail and your
tremendous feedback surely improved the quality of my thesis.
 It would be remiss of me not to acknowledge the valuable support of all my
colleagues in the Department of Jurisprudence. Your encouragement has
nurtured my confidence. I would like to thank Professor Irma Kroeze, the former
Chair of the Department of Jurisprudence, for granting me study leave to
complete my thesis. Many thanks also to Ms Gugu Nkosi for holding the fort while
I was on academic leave. A special thanks to Freddy Mnyongani and Professor
Abioye for their invaluable comments with regard to my ideas. Pastor Frans
Mahlobogwane and Mama Patricia, your prayers meant a lot and provided so
much inspiration. To Professor Rena Van den Bergh and her husband, Gerry,
thank you for supporting me throughout this journey.
 To my friends dispersed all over the world: many thanks for your prayers,
thoughts and good wishes.
 My parents, who raised and supported me, are very important to me. I am
grateful to them for emphasising the importance of giving priority to education. My
mother, who has been my role model since childhood, has taught me the
importance of hard work, perseverance and personal sacrifice. The memory of
my late father will always stay with me. He taught me the value of honesty and
faith in God in achieving my dreams. Many thanks to my two sisters, Sipho and
Zodwa, for their laughter and for inspiring me to turn my dreams into reality.
 Finally, I would like to thank my husband, Venantio, who has always been there
for me, encouraging me and standing by me through the good times and the bad.

Mphoeng Maureen Mswela
February 2016

iv
SUMMARY
Despite the fact that albinism affects several South Africans, it is a condition that
remains deeply misunderstood. Albinism is steeped in myth and false notions, and is
perceived by many as a curse and contamination. For years, persons living with
albinism have been treated with doubt and suspicion. Also in schools and in the
wider community, children with albinism are subjected to violence and ridicule. In
certain areas on the African continent, including Southern Africa, persons living with
albinism are killed for the trade in body parts for use as sacramental medicines, or
sexually assaulted as a result of the belief that raping them may offer a cure for
HIV/AIDS. All of this highlights the extreme vulnerability of persons living with
albinism, not to mention the many violations of their fundamental rights that follow
from the manner in which they are treated. Within the social context that frames the
experience of persons living with albinism, the primary purpose of this study is to
highlight some of the pertinent challenges faced by persons living with albinism in
South Africa which compromise the full enjoyment of their fundamental rights as
enshrined in the South African Constitution. The thesis makes a number of practical
recommendations that will assist in promoting the legal position of this vulnerable
group, while also contributing to a better understanding of albinism in general which
will ultimately change negative perceptions and debunk the myths surrounding the
condition.

Key terms: Albinism, albino, disability, discrimination, colourism, muti murder,
myths, stereotypes, popular culture, the right to equality, the right to dignity, the right
to life, the right to health care services, the right to education, the right to social
assistance.
v
TABLE OF CONTENTS
Declaration……………………………………………………………………………..... i
Dedication............................................................................................................... ii
Acknowledgements................................................................................................ iii
Summary................................................................................................................ v
Key terms………………………………………………………………………………… v
CHAPTER 1: INTRODUCTION ………………………………………………………. 1
PART I
1.1 Contextual background and significance of the topic....................................... 1
PART II
1.2 Research problem and problem statement...................................................... 7
1.3 Research approach and methodology.............................................................. 10
1.4 Choice of legal systems................................................................................... 10
1.4.1 South Africa.............................................................................................. 10
1.4.2 Tanzania................................................................................................... 11
1.4.3 Kenya........................................................................................................ 11
1.4.4 United States of America.......................................................................... 11
1.5 Framework of the thesis.................................................................................. 12
1.6 Limitations....................................................................................................... 14
PART III
1.7 The socio-cultural and historical context of albinism…………………….…….. 15
1.7.1 Cultural beliefs, superstitions and myths associated with albinism........... 15
1.7.2 Stereotypes relating to albinism as portrayed in the media and
literature................................................................................................... 18
1.7.3 History of the “evil albino” stereotype....................................................... 19
1.7.3.1 Exceptions to the negative stereotyping of albinism………………... 21
1.8 Epidemiology and the prevalence rate of albinism.......................................... 22
1.9 Living with albinism during apartheid............................................................... 25
1.10 Albinism in the era of the new constitutional democracy............................... 25
1.10.1 The right to equality............................................................................... 28
1.10.2 The right to life........................................................................................ 29
vi
1.10.2.1 Albino murders………………………………………………………… 30
1.10.2.2 Witchcraft and muti murder in South Africa………………………… 35
1.10.3 Access to health care............................................................................. 36
1.10.3.1 The effect of climate change………………………………............. 38
1.10.4 The right to human dignity...................................................................... 39
1.10.5 The right to freedom and security of the person..................................... 39
1.10.6 The right to social security...................................................................... 40
1.10.7 Special education for persons living with albinism.................................. 40
1.10.8 The right to privacy................................................................................. 41
1.11 Definitions....................................................................................................... 41
1.12 Conclusion…………………………………………………………………………. 42
CHAPTER 2: CLINICAL OVERVIEW OF ALBINISM……………………………… 43
2.1 Contextual background and significance of the chapter................................ 43
2.2 Clinical definition of albinism............................................................................ 44
2.3 Gene mutation and albinism............................................................................ 45
2.4 Classification of albinism.................................................................................. 47
2.4.1 Oculocutaneous albinism.......................................................................... 47
2.4.1.1 Type 1……………………………………………………………............ 47
2.4.1.2 Type 2……………………………………………………………............ 48
2.4.1.3 Type 3……………………………………………………………............ 49
2.4.1.4 Type 4……………………………………………………………............ 49
2.4.2 X-linked ocular albinism............................................................................ 50
2.4.3 Hermansky-Pudlak syndrome................................................................... 50
2.4.4 Chediak-Higashi syndrome....................................................................... 52
2.5 Symptoms of albinism..................................................................................... 53
2.6 Diagnosis of albinism........................................................................................ 53
2.7 Treatment of albinism...................................................................................... 54
2.7.1 Albinism and skin cancer.......................................................................... 54
2.7.1.1 The skin………………………………………………………………….. 55
2.7.1.2 Skin cancer and albinism………………………………………………. 55
2.8 Lifespan of a person living with albinism......................................................... 56
vii
2.9 Conclusion........................................................................................................ 57
CHAPTER 3: THE CONSTITUTIONAL FRAMEWORK RELEVANT TO
PERSONS LIVING WITH ALBINISM……………………………….. 58
3.1 Introduction....................................................................................................... 58
3.2 The right to equality within the constitutional framework................................. 62
3.2.1 Theoretical observations........................................................................... 62
3.2.2 The right to equality in the context of albinism.......................................... 77
3.2.2.1 Colour as a ground for discrimination against persons living with
albinism………………………………………………………………….. 77
3.3 The right to life in the constitutional framework.............................................. 87
3.3.1 Theoretical observations........................................................................... 87
3.3.2 The right life in the context of albinism..................................................... 98
3.4 The right to health care services..................................................................... 103
3.4.1 Introduction............................................................................................... 103
3.4.2 Guidelines formulated by the Constitutional Court to determine whether
the State has realised its positive duties................................................. 107
3.4.2.1 Reasonable legislative and other measures………………………… 107
3.4.2.2 Progressive realisation……………………………………….............. 110
3.4.2.3 Within available resources…………………………………………….. 112
3.4.2.4 How the principle of freedom from discrimination relates
to health………………………………………………………………….. 114
3.4.3 The right to health care services in the context of albinism................. 114
3.5 The right to special education.......................................................................... 118
3.5.1 Theoretical observations........................................................................... 118
3.5.2 The right to education in the context of albinism...................................... 121
3.6 The right to privacy.......................................................................................... 122
3.6.1 Theoretical observations........................................................................... 122
3.6.2 The right to privacy in the context of albinism........................................... 128
3.7 Conclusion…………………………………………………………………………... 130
CHAPTER 4: THE LIMITATIONS ANALYSIS………………………………………. 132
4.1 Introduction....................................................................................................... 132
viii
4.2 The proportionality test..................................................................................... 135
4.3 Limitation of the right to life among persons with albinism under
constitutional scrutiny..................................................................................... 144
4.4 Unfair discrimination of persons with albinism under constitutional scrutiny.... 149
4.5 Conclusion........................................................................................................ 152
CHAPTER 5: ALBINISM AND DISABILITY: A COMPARATIVE ANALYSIS...... 153
PART I
5.1 Contextual background and the significance of the chapter............................. 153
5.2 The legislative framework regulating disability in South Africa........................ 156
5.3 Disability as an insufficiently inclusive concept under the Employment Equity
Act 55 of 1998................................................................................................. 159
5.3.1 Standard Bank of South Africa v Commission for Conciliation, Mediation
and Arbitration and Others....................................................................... 160
5.3.2 IMATU & Another v City of Cape Town.................................................... 161
5.4 The legal definition of disability under the Americans with Disabilities Act of
1990: A case study......................................................................................... 164
5.4.1 Sutton v United Airlines............................................................................ 164
5.4.2 Manz v Gaffney......................................................................................... 166
5.4.3 Barta v Sears............................................................................................ 171
5.4.4 Terri Bakker v Greyhound Bus Line Ray Robinson................................... 176
5.4.5 Victor Hernández, Janice Del Valle, individually and as representatives
of the minors Victor Hernández-Del Valle and Natalia Hernández-Del
Valle v William Turner and Carib Christian School………………………... 176
5.5 The Americans with Disabilities Amendment Act of 2008 and the overturn of
the decision in the Sutton case........................................................................ 177
5.6 Albinism and disability in the context of the South African Employment
Equity Act 55 of 1998...................................................................................... 181
5.7 Albinism as a perceived disability under the Americans with Disabilities
Amendment Act of 2008 and the Convention on the Rights of Persons with
Disabilities....................................................................................................... . 184
PART II
5.8 Albinism: Does it qualify as a disability under the Social Assistance Act 13 of
2004? ............................................................................................................... 196
5.8.1 Theoretical observations........................................................................... 196
ix