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How to cite this thesis

Surname, Initial(s). (2012). Title of the thesis or dissertation (Doctoral Thesis / Master’s Dissertation). Johannesburg: University of Johannesburg. Available from: http://hdl.handle.net/102000/0002 (Accessed: 22 August 2017).

UMDLAVUZA WAMABELE: ZULU WOMEN’S NARRATIVES

OF BREAST CANCER, ILLNESS AND HEALING

By

DUDUZILE CHAROL ZWANE

Student no: 201515660

Supervisor: Professor Pier Paolo Frassinelli

Submitted in fulfilment of the requirements for the degree of Doctor of Philosophy (Communication Studies) at the Department of Communication Studies, University of

Johannesburg

i

Dedication

This project is dedicated to the incomparable Victor Sandile Xulu. Thank you for persuading

me to come back to academia. Mankind has yet to invent vocabulary that adequately captures

my awe of and indebtedness to you. You are my dearest friend and biggest supporter. I must

have done something honourable in a past life to be blessed with you in this one.

ii

Declaration

I, Duduzile Charol Zwane, declare that:

1. The research reported in this thesis, except where otherwise indicated, is my original

research.

2. This thesis has not been submitted for any degree or examination at any other university.

3. This thesis does not contain other persons’ data, pictures, graphs or other information, unless

specifically acknowledged as being sourced from other persons.

4. This thesis does not contain other persons’ writing, unless specifically acknowledged as

being sourced from other researchers. Where other written sources have been quoted, then:

a. Their words have been re-written, but the general information attributed to them has been

referenced

b. Where their exact words have been used, then their writing has been placed in italics and

inside quotation marks and referenced.

5. This thesis does not contain text, graphics or tables copied and pasted from the Internet,

unless specifically acknowledged, and the source being detailed in the thesis and in the

References sections.

Student Name: Duduzile Charol Zwane (Student No.: 2015 15 660)

Signature:

Date: 24 October 2018

iv

Acknowledgements

This doctoral study would not have been possible without the financial support of the National

Institute for the Humanities and Social Sciences (NIHSS).

I would like to say thank you to every single Zulu lady who trusted me with her umdlavuza

story. I was a complete stranger who wanted to delve into the most personal experience of your

life. You granted me an all-access pass freely. Our conversations left me riddled with guilt at

not being able to help you more. However, they are seared into my heart. In future I hope to be

in a position to do for others in your position, what I could not do for you. IsiZulu sithi izandla

ziyagezana. Ngiyathemba ukuthi ngelinye ilanga, ngiyoba namandla okubokhombisa ukuthi

lamagama ayiqiniso, kakhulukazi kuthina mbokodo.

Last and most importantly, thank you to my Lord and Saviour Jesus Christ. I am not His most

pious child. Nor am I the most faithful. However, His unfaltering love and divine provision

never failed my imperfect self. I hope that this project glorifies Him in some way.

v

Abstract

Breast cancer is a global health threat that amasses scores of new patients and fatalities

annually. It has gradually escalated to epidemic status, with an estimated 1.7 million new cases

being diagnosed annually. South African women have a 1 in 81 lifetime risk of developing

breast cancer, with an age standardised incidence rate of 27 per 100 000 population.

Disturbingly, underprivileged and marginalised women are now being diagnosed with a more

aggressive, rapidly spreading form of breast cancer, which – tragically – they rarely survive.

This study investigated how a selection of disadvantaged women from KwaZulu-Natal that

were diagnosed with breast cancer, experienced and perceived this illness. By examining the

narratives of this neglected majority, I sought to establish how their breast cancer reality is

lived, communicated, and negotiated. The study found that despite facing numerous socio-

cultural and structural challenges, Zulu breast cancer patients are resilient and proactive about

overcoming this disease. Consequently, the study endorses the creation of culture-congruent

health communication strategies that promote prompt detection and treatment of breast

abnormalities. Further, it supports the improvement of existing healthcare services that are

geared towards women with breast cancer.

Key Words: Breast Cancer, Zulu women, Communication

vi

Acronyms

AIDS-Acquired Immune Deficiency Syndrome

ANC-African National Congress

ART-Anti-Retroviral Treatment

BRCA- Breast Cancer Type 1

BRCA2- Breast Cancer Type 2

BSE-Breast Self-Examination

CANSA- Cancer Association of South Africa

CCA-Culture Centred Approach

DFL-Doctors for Life

EPPM-Extended Parallel Process Model

HBM-Health Belief Model

HRQOL-Health Related Quality of Life

HIV-Human Immune Deficiency Virus

IALCH- Inkosi Albert Luthuli Central Hospital

KZN- Kwa Zulu Natal

LGBT-Lesbian Gay Bisexual & Transgender

LFPR- Labour Force Participation Rate

MRI- Magnetic Resonance Imaging

NGO-Non Governmental Organisation

NIHSS-National Institute for the Humanities and Social Sciences

RMP-Rural Medical Practitioner

RRM-Risk Reducing Mastectomy

TB-Tuberculosis

UNAIDS- Joint United Nations Programme on HIV/AIDS

WHO-World Health Organisation

vii

Table of Contents

Dedication ................................................................................................................................................ i

Declaration .............................................................................................................................................. ii

Affidavit: Master’s and Doctoral Students ............................................................................................ iii

Acknowledgements ................................................................................................................................ iv

Abstract ................................................................................................................................................... v

Acronyms ............................................................................................................................................... vi

Chapter One ............................................................................................................................................ 1

Introduction ..................................................................................................................................... 1

Motivation for the Study ................................................................................................................. 2

Context of the Research Problem .................................................................................................... 4

Location of the Study ...................................................................................................................... 6

Key Research Objectives & Questions ........................................................................................... 8

Dissertation Structure .................................................................................................................... 10

Chapter Two.......................................................................................................................................... 13

Literature Review .............................................................................................................................. 13

Introduction ................................................................................................................................... 13

Defining, Detecting, Managing and Treating Breast Cancer ........................................................ 14

The Management and Treatment of Breast Cancer ....................................................................... 16

Traditional vs. Biomedical Healing: Tensions between Two Worlds .......................................... 24

Breast Cancer from a Global Perspective ..................................................................................... 27

Causes of Breast Cancer Invisibility in South Africa ................................................................... 30

Global Culture Inspired Breast Cancer Stereotypes ...................................................................... 33

Social Interpretations of Cancer Related Pain .............................................................................. 44

Global Commodification of the Breast Cancer Cause .................................................................. 48

Breast Cancer Conversations: Profiling Cancer Champions ........................................................ 52

Conclusion .................................................................................................................................... 56

Chapter Three........................................................................................................................................ 57

Conceptual Framework ..................................................................................................................... 57

The Subaltern According to Gramsci ............................................................................................ 59

The Origins of the Black Dependency Complex .......................................................................... 63

Subordinating the South African Female ...................................................................................... 72

The politics of Masculinity ........................................................................................................... 72

Shattering the Frail Female Fallacy .............................................................................................. 75

Cultural Forces .............................................................................................................................. 77

viii

Elitist Representation .................................................................................................................... 79

From Subordination to Exploitation ............................................................................................. 81

Criticism ........................................................................................................................................ 86

The Growing Need for a Culture Centred Approach to Health Communication .......................... 88

Key Characteristics ....................................................................................................................... 94

The Capabilities Approach............................................................................................................ 97

The Importance of Freedom in Evaluating Capability ................................................................ 101

Nussbaums Expansion of the Capabilities Approach ................................................................. 102

Conclusion .................................................................................................................................. 103

Chapter Four ....................................................................................................................................... 106

Methodology ................................................................................................................................... 106

Narratives .................................................................................................................................... 106

Sampling Design ......................................................................................................................... 115

The Interviewing Process ............................................................................................................ 115

Participant Observation and Field Notes..................................................................................... 118

Ethical Considerations: Participant Privacy and Data Storage ................................................... 119

Limitations .................................................................................................................................. 119

Chapter Five ........................................................................................................................................ 125

Findings and Discussion ................................................................................................................. 125

General Perceptions of and Reactions to Umdlavuza Wamabele (Breast Cancer) ..................... 125

Ukwamukela (Acceptance) ......................................................................................................... 127

Subtexts of the word “Umdlavuza” ............................................................................................ 128

Prior Knowledge of Breast Cancer ............................................................................................. 131

Breast Cancer Detection.............................................................................................................. 132

Navigating the path from Detection to Treatment ...................................................................... 134

Causes of Delay .......................................................................................................................... 138

Accessing Breast Cancer Information ......................................................................................... 144

Is Breast Cancer Hereditary? ...................................................................................................... 150

Previous Breast Cancer Diagnosis .............................................................................................. 151

Cancer Conversations ................................................................................................................. 153

Assessing the General Inclination to Talk .................................................................................. 156

Stigma and Shame ....................................................................................................................... 158

Unpacking the particulars of breast cancer treatment ................................................................. 160

Christianity vs. Traditional Healing ............................................................................................ 163

Perspectives of Treatment ........................................................................................................... 164

Is there a purpose to chemotherapy? ........................................................................................... 173

Surgery Perspectives ................................................................................................................... 175

ix

Breast Reconstruction ................................................................................................................. 182

Palliative Care ............................................................................................................................. 184

Logistics and Travel Arrangements ............................................................................................ 186

Counselling for Cancer Patients .................................................................................................. 189

Final Remarks from the Patients ................................................................................................. 191

Findings in Relation to the Study’s Objectives ........................................................................... 192

Chapter Six.......................................................................................................................................... 196

Synthesised Conclusions & Opportunities for Further Study ......................................................... 196

Breast Cancer Information Scarcity ............................................................................................ 196

Resolving Delayed Referrals ...................................................................................................... 199

Exploring various Breast Cancer Treatments ............................................................................. 200

Multifaceted Communication Approach ..................................................................................... 202

Financial Aid ............................................................................................................................... 203

Opportunities for Further Study .................................................................................................. 204

References ........................................................................................................................................... 206

Informal URLs ................................................................................................................................ 216

APPENDICES .................................................................................................................................... 219

APPENDIX A: Approval of Research from the Department of Health ......................................... 219

APPENDIX B: Ethical Clearance Form (University of Johannesburg) ......................................... 220

APPENDIX C: Letter of Support (Inkosi Albert Luthuli Central Hospital) ................................... 222

APPENDIX D: Informed consent English ...................................................................................... 224

APPENDIX E: Informed Consent Form Zulu ................................................................................ 226

APPENDIX F: Interview Schedule/Guide ...................................................................................... 228

x

1

Chapter One

Introduction

Cancer is an enigmatic illness due to its precise causes being indeterminate (Pal et al. 2015;

Daly et al. 2015). Essentially, it can be understood as an aberration of bodily cells (Pal et al

2015; Daly et al. 2015). The human body consists of billions of cells that divide, multiply and

progressively expire. Conversely, cancerous cells deviate from this pattern by multiplying

rapidly without expiring. Cancer can affect virtually any part of the body where there is a

mushrooming of these anomalous cells. It can affect males and females of any colour, race

group, social class and creed. However, this entire dissertation confines itself to an exclusive

examination of the breast cancer experiences of Zulu women.

“Breast cancer is the most common cancer among all women in the general population

worldwide, with 1.7 million new cases diagnosed each year” (Grover et al.2017: 1). “In South

Africa, breast cancer is the leading type of cancer affecting women” (Reddy et al. 2017:10).

However, “the determination of accurate cancer statistics remains a challenge… largely due to

the lack of resources to establish and maintain national cancer registries. It is therefore likely

that there is an underreporting and underestimation of the burden of cancers in this region”

(Reddy et al. 2017:10). Despite the unavailability of conclusive figures of the incidence of this

illness throughout the African continent, experts anticipate that the burden will double by 2050

(Grover et al. 2017:1).

Historically, the incidence of this incapacitating disease was higher in women from the

Developed World than those from the Third World (Newman et al. 2015) However, this is no

longer the case as the latter group are increasingly being diagnosed with it. Ngidi (et al.

2017:595) corroborate this further by asserting that breast cancer “is the main cause of cancer-

related death in women in less developed regions and the second most common cause in

developed countries. Since the 2008 cancer incidence estimate… mortality… [has increased]

by 14%”.

Evidently, this disconcerting pattern has been escalating over the years. In Durban Kwa Zulu

Natal (KZN) for instance, during the 1975-1983 period, 28 African women from a population

of 600 000 were admitted to the local King Edward VIII Hospital per year for breast cancer

2

treatment (Walker et al. 2004). The data collected from 1994 to 1999 revealed a sharp incline

when the hospital began seeing 54 patients annually (Walker et al. 2004). Notably, poor and

underprivileged women are typically diagnosed with a more aggressive, rapidly spreading form

of breast cancer, which they rarely survive (Neuman et al.2015). Various factors are believed

to contribute to this, chief amongst them being late diagnosis (Neuman et al. 2015; Dickens et

al. 2015, Ngidi et al. 2015).

In the past, many reasons have been cited for African women seeking treatment when their

breast cancer had advanced to near fatal stages. They include socio-economic disparities such

as lack of access to health care, correct information which could help them detect cancerous

lumps by themselves and cultural factors (Amador et al. 2015; Brinton et al. 2014). Newer

studies reveal other risk factors that are supposedly unique to African ladies (Newman et

al.2015). They include “microbiomata, xenoestrogens, hair relaxers and skin lighteners”

(Brinton et al. 2014: 1). The former factors have been researched at length, particularly in

Western settings. The latter factors have not been researched as extensively despite evidence

of a significant knowledge gap in research which approaches breast cancer from a South

African cultural perspective (Ngoma et al. 2015). Mdondolo (et al. 2003:95) one of the only

cohorts of South African scholars to have studied the cultural aspects of breast cancer

communication in depth, called for new research that examines “cultural values, beliefs and

practices related to health and illness in general and breast lumps in particular”. The expectation

is that such research would help develop “culture congruent health education campaigns on

early detection and treatment of breast lumps” (Mdondolo et al. 2003:87). To a certain degree,

this dissertation endeavours to heed this call.

Motivation for the Study

At this stage it is vitally important to disclose the fact that Zulu traditional healing was a

tremendous influence to the dissertation. It was the partial impetus behind the decision to

embark on it fully. Overall, pondering the efficacy or lack thereof of traditional healing has

always been a latent curiosity of mine. It evolved into a more focused interest after its centrality

to South African healthcare became evident (Wright 1997; Muller and Steyn 1999; Steyn and

Muller 2000; Flint and Parle 2008; Mathibela 2015). I discovered it when I began consciously

observing breast cancer survivors in my private life, then in my community of Inanda in Durban

Kwa Zulu-Natal and eventually those who were public figures. Having always been passionate

about women’s health issues, I remained convinced that they were not adequately researched.

3

I was astounded by how breast cancer could be a widespread health concern with fatal

implications yet be so exceptionally misunderstood.

On the surface, it appeared that women lacked correct information. For instance, knowing how

to perform breast self-examinations (BSE) is a useful and practical skill that can aid with early

cancer detection (Women’s Health Breast Cancer 2013; CANSA 2014). However, after

observing the utter ineptness and confusion demonstrated by a relative who was diagnosed with

breast lumps, I concluded that merely equipping women with information was not enough.

Over the course of several years, the relative oscillated between traditional and biomedical

healing. Initially, she chose to treat the lumps through the Zulu traditional healer route. This

yielded positive results for what appeared to be an incalculable number of years. However,

they reappeared and were eventually excised at a public hospital. I then questioned whether the

traditional medication had cured them and more had developed of their own accord.

Alternatively, I speculated about whether the treatment had made them dormant and

temporarily undetectable, only to resurface at a later stage.

The most challenging aspect of witnessing this particular cancer experience was the

overpowering, interminable silence around breast cancer. It was never a subject that was

discussed openly. It was virtually a “dirty secret” that the relative believed had to be borne

alone (Thorne and Murray 2000:143). I was intrigued by how other health issues could be

discussed in graphic detail, yet breast lumps and cancer were forbidden territory despite

obviously being bothersome. As a concerned family member observing her, it was difficult to

reconcile with the fact that she was experiencing a debilitating illness unaided. Not knowing

how to broach the issue and offer support was a bewildering position to be in.

During this time, there were anecdotal accounts of another young woman in the community

who had been diagnosed with breast cancer. Reports of her family’s conscious denial of her

breast diagnosis on account of her age, began circulating. Once again, these were either

whispered or discussed fleetingly. Additionally, I recalled being constantly warned about the

dangers of placing coins in the cleavage or wearing ill-fitting brassieres. Doing so was

rumoured to increase the probability of developing breast cancer. Such beliefs are pervasive in

other African communities (Remennick 2006). Gradually, they are rewoven until they are

accepted as truthful. What was true and what was not? What was meaningful and what was

not? Recollections of these occurrences convinced me that this subject, the resounding silence

4

around it, the apparent myths which perpetuate the misperceptions about it and culture’s

contribution to that, are worth focused academic enquiry.

Context of the Research Problem

Clinicians the world over agree that the breast cancer scourge is intensifying to astounding

proportions (Moodley et al. 2016; Brinton et al. 2014; Newman et al. 2014). As

aforementioned, the precise number of breast cancer cases in South Africa is challenging to

establish. However, is has been suggested that the currently unstipulated figure “will double

by 2050 and as such, more information is needed to guide treatment” (Grover et al. 2017:1).

Current statistical conjecture suggests that in South Africa, breast cancer has “an age-

standardised incidence of 27 per 100 000women” (Moodley et al. 2016: 1). These statistics

should be cause for alarm as they indicate that women are being predisposed to this disease at

a much younger age. An older study indicated that “in South Africa breast cancer [appears to

have taken overtaken cervical cancer as the most common form of the disease in women, with

the lifetime risk being 1 in 81 women for African women” (Pillay 2002:104). Twelve years

after it was conducted Brinton (et al. 2014:1) reveal that this unsettling trend persists. Their

findings confirm that breast cancer has indeed “surpassed cervical cancer as the leading cause

of death” amongst the African continent’s women (Brinton et al. 2014:1). Thus, we can surmise

that instead of abating, breast cancer is intensifying.

Scholars also agree that women from less affluent countries formerly experienced a lower risk

of developing breast cancer, due to “protective factors such as delayed menarche…multiparity

and protracted breast-feeding” (Formenti et al. 2012: 2). Other factors which shielded them

from developing the disease include “age, sex, age at full term pregnancy…age at onset

menopause, [lack of] obesity and [regular] physical activity” (Akarolo-Anthony et al. 2010:2).

However, it has been hypothesised that the Westernisation which has permeated into their

lifestyles has reduced the efficacy of these protective factors (Cubasch et al. 2013; Formenti et

al. 2012; Akarolo-Anthony et al. 2010). Even seemingly inconsequential dietary changes such

as indulging in fatty foods could make African women more vulnerable to breast cancer in the

long term (Formenti et al. 2012).

The literature also reveals that when the Third World is confronted by more prominent diseases

such as HIV/AIDS, breast cancer becomes a lesser priority (Igene 2008; Ngidi et al. 2017;

Langenhoven et al. 2016). Breast cancer is a silent killer, while the devastation caused by

HIV/AIDS is impossible to ignore. For instance, “statistics show that more than 25 million

5

people in sub-Saharan Africa have HIV infection; however, not much is known about the

cancer risk in this group” (Reddy 2017:10). Neither the precise figure of those afflicted nor the

core aggravating variables are known. Further, the scientific community seem to have no

immediate plans to research breast cancer further. This is despite the knowledge of a correlation

between HIV and breast cancer.

Researchers seem content to exclusively examine HIV and all that it encompasses. This

intellectual apathy is evidenced by Reddy’s (et al. 2017: 11) confirmation that “there were no

prospective studies looking specifically at the association between HIV and breast cancer”.

The availability of a vast array of literature that captures HIV/AIDS insights is common

knowledge. The shortage of breast cancer literature and the reluctance to embark on research

on it, corroborates my assertion that there is a degree of silence around it. It can also be argued

that structural limitations to breast cancer care contribute to its social invisibility (Dickens et

al.2014). There is a plethora of organisations that render various forms of HIV/AIDS care.

These include public hospitals, clinics and non-profit organisations. Most importantly, these

facilities that are devoted to the diagnosis and treatment of HIV/AIDS are relatively easy to

access. By contrast, access to a standard breast cancer detection procedure such as a

mammogram is limited due to the high costs of equipment and trained personnel to facilitate it

(Wadler et al. 2004). This argument is extracted from a study that was conducted over a decade

ago. However, since then, no tangible advances have been made to rectify the issue of breast

cancer visibility. This subject will be revisited further on in the dissertation.

Additionally, incorporating culture into health communication interventions is neglected. This

tendency prevails despite researchers emphasising its importance for several reasons (Dutta

2008; Forte 1995; Mdondolo et al. 2003). These include the fact that an individual’s

perceptions of a health issue and the choices they make in order to prevent or treat it are not

constructed in isolation (Kline 2007). It is critical to develop an increased sensitivity to cultural

influences because they “shape practices with regard to health, illness and medicine and

mediate responses to health education information” (Kline 2007:85). With a health issue as

delicate as breast cancer the need for a culturally sensitive approach to communication becomes

even more pronounced.

Further, due to breast cancer being enveloped in “fears, myths and connotations” (Remennick

2006: 102) open communication about it is not always easy. Factors which constrain discussion

about it include the sacrificial victim role that societies seem to have created for their women

6

(Remennick 2006). They are expected to staunchly inhabit the roles of being wives and mothers

without a smidgeon of vulnerability lest that be mistaken for “weakness”- which appears to be

an intolerable quality (Remennick 2006). So intense are these social beliefs that some women

have resigned themselves to accepting breast cancer as a godly curse, while others privately

fear that it will limit their marriage prospects (Nelms and Gorski 2006; Meneses and Yarbro

2007). There are also connotations attached to the type of treatment cancer patients seek.

Western treatment typically involves invasive surgical procedures with harsh side effects

(Muhamad et al. 2012). As a result, in some communities it is interpreted negatively.

Conversely, traditional treatment tends to be more holistic and take into account the spirit, mind

and body (Nelms and Gorski 2006). It will be interesting to examine the impact of all these

stereotypes on breast cancer patient’s communication ability, in greater detail.

Location of the Study

The research study is situated in Durban, Kwa Zulu Natal (KZN), South Africa. To be more

precise, it is centred on breast cancer patients who frequent the Inkosi Albert Luthuli Central

Hospital (IALCH) in Cator Manor, Durban, Kwa Zulu Natal.

Figure A: Aerial View of the Inkosi Albert Luthuli Central Hospital

Broadly, it interrogates the breast cancer narratives of Zulu women from various

underprivileged areas in the KZN province. Kwa Zulu Natal is a sprawling, densely populated

7

province. Out of South Africa’s 56.5 million people, 11 million call it home (Statistics SA

2017:7). It is regarded as the “Kingdom of the Zulu” and marketed as such by the tourism

industry (Whitelaw 2008:47). Directly translated, the province’s name means “home and

birthplace of the Zulu” (Whitelaw 2008:47).

Figure B: An illustration of the KZN landscape and the typical Zulu homestead

It was established during the 18th century by King Shaka Zulu the illegitimate son of

Senzangakhona ka Jama (Laband 2008). Globally, people have been regaled with stories of

how after Senzangakhona’s demise in 1817, Shaka Zulu ruthlessly assassinated his half-brother

in order to reign as one of the greatest empire builders of all time (Laband 2008). Under his

strategic, albeit aggressive leadership, many epic victories were attained (Laband 2008). These

conquests moulded the province into the homogenous region that it is today and gave it “its

own identity, body of memories and traditions” (Wright 2008:36). The legacy of Shaka’s

prowess on the battlefield is still a source of great pride for the province. In fact, knowledge of

his resilience and perseverance in the face of adversity has been indelibly imprinted onto Zulu

people and is integral to their identity (Wright 2008; Laband 2008).

Disappointingly, what KZN boasts in historical depth, it lacks severely in health care. The

region has the country’s biggest HIV/AIDS burden as 15.2% (1 680 200 people) are currently

living with these ailments (SERO 2017). Presently, “about 52.6 percent of HIV positive people

have been placed on anti-retroviral (ARV) treatment in the province” (SERO 2017: 26). I

8

presume that this diminishes the health budget significantly because providing this type of care

to that amount of sick people is not a cheap feat. The abundance of people in the province may

also be a contributing factor to the 47.8% poverty rate (SERO 2017). Statistical research that

was conducted in 2015 revealed that “KZN was trailing behind most other provinces in the

country in respect of connecting households with electricity” (SERO 2017: 28). Notably, an

astounding 44.1% of the KZN residents reported that they were unhappy with the quality of

basic amenities such as tap water (Statistics SA 2017). In addition to this, KZN has one of the

highest unemployment rates. In fact, “the LFPR in KZN is estimated at 30.6 percent which is

far below the national average rate of 36 %” ( SERO1 2017: 65). From these statistics about the

resource shortages in KZN, we can deduce that most citizens cannot afford quality healthcare.

Therefore, public healthcare facilities that are notorious for being over-crowded and poorly

equipped are often the locals’ only recourse. Evidently the KZN province is besieged with the

strain of responding to all these difficulties. We can then infer that habitually launching and

propagating breast cancer communication interventions is challenging.

Key Research Objectives & Questions

What is perhaps the biggest objective of this doctoral dissertation is to examine how Zulu

culture influences the definition, detection, reporting and treatment of breast cancer amongst

women from this ethnic group. Essentially, my aim is to establish the impact of cultural

variables on Zulu patients’ breast cancer journeys. What is the role of culture in framing

gender-specific discourses of breast cancer? As a Zulu woman who has been diagnosed with

breast cancer, how does culture affect your understanding of your condition? How did culture

factor into your diagnosis? Is it possible that there were cultural norms which prevented you

from seeking help early or did they motivate you to do so? Importantly once you had accepted

the diagnosis, how did culture influence your choice of treatment? Further, both bio-medical

and traditional methods have strengths and weaknesses. However, the goal is to establish the

most preferable treatment options amongst contemporary Zulu women and get to the crux of

why they are viable.

Secondly, the study aims to examine how Zulu women experience and explain the existence

of breast cancer in their everyday lives. Earlier in the chapter, I alluded to the stigma and silence

that appears to accompany a breast cancer diagnosis (Bell 2014). Therefore, by talking to breast

cancer patients, I hope to get to the core of their perceptions about living with the disease. For

1 LFPR: Labour Force Participation Rate

9

example, there is a Zulu word for breast cancer (umdlavuza wamabele), but what connotations

do patients attach to it? Are there other words that have been created to refer to breast cancer?

If so, what are they and what do they reveal about the patients understanding of their illness?

Do they consider it a curse, a burden and an aspect of their lives that they associate with shame?

It could also be that their diagnosis has empowered them to live positively and to talk openly

about it. Examining how women communicate about breast cancer can unveil their authentic

perceptions about it.

Thirdly, my goal is to speak to breast cancer patients and then utilise their narratives to

problematize how health communication practitioners can modify their efforts to be more

sensitive to a Zulu audience. Western scholars claim that women are so inundated with

information that they can’t help but be “overwhelmed by the sheer volume” of it all (Thorne

and Murray (2000:143). Unfortunately, this is not always true for women on the margins.

Historically, the limited susceptibility of African women to breast cancer resulted in very little

research being conducted with them (Pillay 2002). Thus, communication about it has not been

prioritised by Third World governments and nongovernmental organisations (Pillay 2002). As

a result of this, awareness levels amongst this group tend to be low (Pillay 2002). It is hoped

that the participants of this study, who don’t theorise about breast cancer but actually live with

it on a daily basis, can offer practical recommendations for remedying this situation. Stated

concisely, the study’s three core research questions are:

1. How does culture influence the definition, detection, reporting and treatment of breast

cancer (umdlavuza wamabele) amongst selected Zulu women?

2. How do Zulu women experience and explain breast cancer (umdlavuza wamabele) in

their everyday lives?

3. What do “breast cancer narratives” by Zulu women reveal about the influence of culture

on breast cancer health theory and practice?

It will be interesting to explore the unique perspectives of a frequently overlooked majority. It

should also be noted that I am well positioned to conduct this study for several reasons: Firstly,

I am a communications scholar who is heavily invested in creating awareness about female

health issues. This degree of passion amplifies my receptivity to the pain of fellow women,

particularly those who are on the fringes of society. Secondly, I am a Zulu woman who spent

the vast majority of her life oscillating between both rural and urban Kwa Zulu Natal (KZN).

This exposure translates into an ability to intuitively understand the challenges that confront a

10

sick person from the outskirts of the KZN region. Similarly, I can appreciate the aspects of

urban life which can anaesthetise health professionals to the plight of underprivileged, ailing

people. This exposure is invaluable when one attempts to capture the subtleties of people’s

individual experiences with disease and healing. Most importantly, my academic background

equipped me with the skills that are needed to extract the knowledge that could advance breast

cancer communication theory and practice.

Dissertation Structure

The first chapter contextualises the study and incorporates several scholarly works in order to

demonstrate that there is a need for it. Its primary goal is to convey the enormity of breast

cancer. Not only is it a colossal health problem globally, it is also devastating to women from

the Zulu community. As such, this issue warrants examination at doctoral level. Further, this

chapter conveys the emotional connection that I have to the breast cancer cause. The reader

can gauge my passion for inserting the perspectives of breast cancer patients from my

community into the scholastic realm. It is my hope that the emotional undercurrent of this first

chapter lays the foundation for an empathetic reading of the study’s findings. Scholars and

laymen alike can vicariously experience the tumults and triumphs of breast cancer through the

narratives of the study’s participants.

Literature Review

The second chapter is the literature review which provides a thorough analysis of various

scholarly works that have been published about breast cancer. I sourced literature that has

brought compelling information to the fore over the years. Some of it addresses the healing

methods of the Western world and those of the Third World’s traditional healers. Also, some

of it documents the psycho-social ramifications of living with breast cancer. By comparing and

contrasting those findings, I intended to outline the progression of breast cancer communication

research. In so doing, the reader can ascertain the gaps that this study fills.

Theoretical Framework

The study’s concern with different types of exclusions and subjugations necessitated a

theoretical foundation that accounts for such inequalities. Thus, Subaltern Studies was the most

appropriate theoretical grounds on which to entrench the study (Spivak 1988; Bahl 1997; Roy

2002; Ludden 2002; MacDonald 2009). Subaltern Studies outlines how minority groups are

covertly yet powerfully silenced. Further, it interrogates the historical dynamics that render

11

them so. Importantly, it exemplifies the changes that occur when the status quo is challenged

by these disregarded minorities once they are empowered through education. When we

consider the study participants’ history and their obligatory adherence to an oppressive system,

subaltern studies become the consummate theoretical basis from which to draw comparisons.

Further, through it, we can hypothesise about the positive changes that can occur once there is

an exchange of knowledge between them, myself and other parties who access the study’s

findings.

Importantly, the role of culture in social change communication is increasingly garnering

interest (Dutta 2008). It was seldom considered in the past. However, the unrelenting failure of

health communication initiatives that disregarded cultural influences led researchers to

hypothesise about its correlation to durable, positive behaviour changes (Dutta 2008; Dutta

2006). The study’s subject matter and participants are deeply submerged in Zulu culture. This

mandated the adoption of the culture centred approach theory (Dutta 2008). It emerged partially

from subaltern studies, therefore integrating it as an additional theoretical lens was

unavoidable. Lastly, positing about the discriminations that minorities usually experience

should enhance the reader’s understanding of how the quality of their lives diminishes.

Amartya Sen’s Capabilities Approach (Sen 2009; Nussbaum 2000; 2003) was utilised in order

to accomplish this task.

Methodology

This chapter summarises the process of physically collecting the data. It includes a description

of the criteria for selecting the study participants and the instruments that were used to capture

their narratives. The ethical considerations are also justified in detail. Overall, this chapter is a

vivid account of the data collection process in its entirety. It assures the reader that rigorous

academic and moral standards were adhered to from the onset until the end.

Findings, Analysis and Interpretation

This chapter presents the key themes that were extricated from the participants’ narratives

about their breast cancer journeys. Additionally, it interprets these findings and makes educated

inferences that are supported by the extensive body of literature that was examined. The chapter

is characterised by copious insertions of direct quotes from the participants. In so doing, the

goal was for their narratives to be illuminated and not eclipsed by all the scholarly suppositions.

Further, the title of this study intimates that the participants’ stories will be privileged.

Therefore, it would have been disingenuous not to do so.

12

Conclusions and Recommendations

This is the sixth and final chapter. It is important as it features participant-inspired

recommendations for health communication practitioners to consider. It is anticipated that

these professionals can integrate the practical suggestions that are made into their health

communication initiatives, thereby making them more culturally apt and resonant. Further, to

a certain degree this study is an exploratory foray into the Zulu-breast cancer sphere. Therefore,

it is important to collate the pertinent points that will be examined in greater depth in the future.

13

Chapter Two

Literature Review

Introduction

The words “breast cancer” (umdlavuza wamabele) 2are simple yet powerful (NCR 2005). They

conjure up images of the breast, a universal symbol of femininity and sexuality (Mdondolo et

al. 2003). However, instead of visualising it in either a nurturing or even erotic manner, the

words trigger disconcerting imagery of the breast in a diseased state, far divorced from the

aesthetic perfection society is accustomed to (Remennick 2006). Treatment often involves

severing the breast (mastectomy), which is regarded by many as a “body-mutilating procedure”

(Remennick 2006:103). This perceived maiming of an organ with such close ties to feminine

and sexual identity engenders “fear, disturbing myths” and inhibits open communication about

the clinical aspects of cancer (Remennick 2006: 102). Unfortunately, the breast cancer scourge

continues to ravage bodies and claim lives globally. Not only is it the most prevalent type of

cancer amongst women, researchers postulate that it will continue to affect a considerable

number of them for years to come (Langenhoven et al. 2016; Moodley et al. 2016; Brinton et

al. 2014).

These disturbing facts indicate that every effort must be made to raise awareness, encourage

early detection and most importantly, intensify culture centred communication in order to erase

the shame enveloping it (Wright 1997; Kline 2007; Pillay 2002; Wadler et al. 2011; Kingham

et al. 2013). This is particularly important within a South African context where limited

resources and conservative cultural norms perpetuate the ethos of silence around this issue

(Cubasch et al. 2013).

The discussion that follows will be an intensive examination of the more heart-rending breast

cancer realities. Both international and local literature will be integrated into the discussion in

order to prove that the devastation associated with this disease is universal. Further, the pattern

that I have detected in scholarly cancer studies is one of general superficiality. The disease is

discussed almost entirely from a scientifically factual yet dispassionate position. While this

stance has its merits, it discounts the socio-cultural, emotional, psychological and spiritual

elements that are intertwined with the reality of living with this disease. With this in mind, this

2 This is the direct Zulu translation of “breast cancer”. Available: http://www.cansa.org.za/files/2014/10/Womens-Health-

Infographic-Breast-Zulu-2014.pdf

14

chapter explores how the aforementioned variables inhibit or enable women’s ability to

communicate about the cancer experience, thereby influencing their treatment seeking

behaviours.

Defining, Detecting, Managing and Treating Breast Cancer

To a great extent, breast cancer is a health threat that is beyond a woman’s control.

Significantly, there is no single breast cancer cause. Researchers often make educated

suppositions about factors that may increase the probability of developing it.

Figure C: Breast Cancer Stages

These can be hereditary (meaning that the patients close relatives passed on the BRCA13 1 or

BRCA2 genes), lifestyle related (lacking a balanced diet and excessive alcohol consumption)

and environmental, (such as through exposure to carcinogens) (Moodley et al. 2016; Women’s

health Breast Cancer 2013; Kruger and Appfelstaedt 2007; Porter 2008). It is imperative that

we understand how breast cancer typically reveals itself. Grasping this will enable us to

appreciate why it is often detected at stages where palliative care is the only resort left. Reports

3 BReast CAncer gene one and two. Every individual has these genes, however, they become problematic if they

develop abnormally and are continuously passed on to generationally in their malformed state. Info available:

http://www.cansa.org.za/womens-health/

15

from the Cancer Association of South Africa (CANSA) indicate that without prior education,

self-diagnosis of breast cancer can be problematic (CANSA 2014). This is due to the tumours

being undetectable in the formative stages of their development (Women’s Health Breast

Cancer 2013). Gradually, they manifest themselves outwardly. Symptoms include lumps near

the breast or armpit, changes in breast size and nipple discharges that are not milk, which are

particularly concerning if they contain blood (Women’s Health Breast Cancer 2013; Fact Sheet

Breast Cancer 2014).

The progression of cancerous cells in the breast is categorised in stages:

Stage 0 refers to the presence of certain abnormal, precancerous cells, while stage 1 refers

to the presence of a tumour smaller than two centimetres that has not spread beyond the

breast. Stages 2-4 refer to the progressing tumor size and spread of cancer to other areas of

the body. Stage 4 is metastatic, meaning that there are one or more large tumors present and

that cancer has spread to other parts of the body…. breast cancer may or may not be present

with symptoms (Gray 2007: 400).

From the excerpt, we can infer that stage zero is the ideal stage at which to detect the cancer

because the toxic cells have not yet proliferated (Gray 2007). Thus, a patient is spared the

trauma of aggressive treatments, side effects and the psychological stressors that accompany a

late diagnosis.

CANSA encourages women from all ethnic backgrounds to familiarise themselves with Breast

Self-Examinations (BSE) which they are advised to perform monthly when they ovulate

(Women’s Health Breast Cancer 2013; Fact Sheet Breast Cancer 2014). This measure is of

utmost importance because early detection can literally be the difference between life and

death. Black women are particularly encouraged to adhere to this recommendation because

they tend to seek medical care at advanced breast cancer stages (Abuidris et al. 2013). In so

doing, they radically reduce their treatment options because by then the tumour may be more

aggressive and resistant to treatment (Abuidris et al. 2013).

Another diagnostic technique is the mammogram, which is arguably more accurate than the

BSE. There are two types of mammograms: the screening version which subjects the patient to

an X-ray of each breast and a diagnostic version which occurs after a cancerous lump has been

identified (Position Statement on Cancer 2014). The former is useful as it detects even minute

calcium traces that are associated with breast cancer, while the latter is utilised to conduct an

in-depth appraisal of the results gleaned from initial screenings (Position Statement on Cancer

2014). To a great extent, the reliability of both types of mammograms depends on the skill of

the health professional performing them (Formenti et al. 2012). Regrettably, false positive

16

mammogram results are commonplace, particularly in middle income countries where the level

of training amongst professionals is questionable (Formenti et al. 2012).

The Management and Treatment of Breast Cancer

This section appraises two of the most popular strategies for breast cancer management and

treatment. The discussion examines this initially from a broader South African perspective.

Ultimately, it focuses strictly on the Zulu community. Typically, breast cancer patients opt

either for the biomedical or traditional healing route. The former is the healing method most

endorsed by medical practitioners, for reasons that will be substantiated in greater depth below

(Oleson and O’Fallon 2012; Mondal 2015; Thornton 2015). Despite this, the literature

pertaining to healthcare in South Africa indicates that a substantial portion of Black people

prefer traditional to biomedical treatment (Thornton 2015; Washington 2010; Crawford and

Lipsedge 2004; Flint and Parle 2008). That being said, it is important to be cognisant of what

both healing approaches entail. In this way we can understand the implications each one bears

for breast cancer patients within a real-world context.

Studies related to South African healthcare tend to extol the virtues of one healing path at the

expense of the other (Nelms and Gorski 2006; Flint and Parle 2008; Ashforth 2005).

Consequently, it becomes challenging to determine what the on the ground reality for the

affected parties truly is. We cannot establish whether it translates into their being more or less

educated about the best treatment decision for their unique experience. On a grander scale, we

are unable to recognise the instances where the trajectory to healing is interrupted by

superfluities such as the commodification of illness for instance. The preoccupation with pitting

biomedicine against traditional healing distracts us. We cannot recognise how doing so

compromises patients’ voices and contributes to inequalities such as exclusion from global

health communication dialogues. Further, the apparent vilification of traditional healing curbs

further investigation into its benefits that can be exploited for the welfare of breast cancer

patients. Additionally, it impedes enquiry into how tradition and the sociocultural setting either

constrains or enhances how women living with the disease communicate about it.

Biomedical Treatment Options

The final decision on the best treatment option for a patient is typically influenced by education,

cultural background, ease of access to health care facilities and family members (Opoku: 2012;

Formenti et al. 2012). Nevertheless, it is important to re-iterate that the superiority of

biomedical treatments is espoused globally. Therefore, it becomes virtually mandatory for

17

breast cancer patients to choose them. Should they do so, they must anticipate a measured

process that is guided by the stage and patient’s age at diagnosis (CANSA 2014). If it is detected

early, the less intrusive and “cosmetically desirable” option is to undergo breast conserving

treatment (Kruger and Appfelstaedt 2007:19). This procedure entails removing the cancerous

tumours and leaving the breast intact. Although this is preferable to a mastectomy, it is

associated with high recurrence rates (Kruger and Appfelstaedt 2007). Furthermore, it is not

always feasible within an African setting due to the unavailability of resources such as medical

expertise (Kingham et al. 2013). However, researchers assert that women, particularly those in

the developing world, should be encouraged to consider it over the more drastic treatments

(Brinton et al. 2014; Kruger and Appfelstaedt 2007).

Harsher breast cancer treatments include chemotherapy, and mastectomies (CANSA 2014). The

former are ongoing medical procedures prescribed by most surgeons. They are intended to

eradicate the cancer tumours (Kingham et al. 2013). In many underprivileged areas surgeons

are tasked with making these recommendations because oncologists are limited throughout the

developing world (Kingham et al. 2013). It is important to note that while these procedures are

suggested with the best intentions, they are not always executed meticulously. Many patients

delay undergoing them because they are not sufficiently educated about what they involve

(Kingham et al. 2013). Those who do consent to them must contend with severe side effects

such as hair loss and (in some cases) infertility (Kingham et al. 2013: 162). Additionally, in

many African cultures, surgical procedures are perceived negatively to the extent that 38.3 %

of women who have undergone them were divorced within 3 years (Opoku 2012; Koon et

al.2013 Kingham et al. 2013). Therefore, while the biomedical approach is portrayed as being

unparalleled in terms of efficacy, it is not beyond reproach. It is simply not a universally

workable healing strategy.

Traditional Healers

Traditional healing is a massive contrast to Western medicine. Therefore, understanding the

attributes of the figures at the forefront of this less venerated field could alleviate the cynicism

towards it. If our knowledge of its practitioners is enriched, we can appreciate why traditional

healing remains a highly sought-after option. The term ‘traditional healer’ can be interpreted

in many ways. In fact, it is an all-encompassing adjective that is utilised in reference to

specialists who practice healing methods that cannot be categorised under the biomedical

umbrella. It could be interpreted as somewhat derogatory as it implies that traditional healers

18

are an enormous yet vague unit. This means that the sheer size of the community makes them

impossible to ignore, yet they do not receive recognition as diverse specialists with unique

skillsets. Contrary to popular belief, traditional healers:

… generally includes herbalists and diviners. Herbalists are those who work mainly with

the application of herbal remedies. They diagnose the illness of a patient through careful

observation and discussion with the patient and prescribe plant-based medicines for

everyday ailments. In contrast, diviners diagnose primarily via spiritual means and serve

as important intermediaries between humans and the supernatural (Mathibela et al. 2015:3)

The excerpt distinguishes between the two main types of traditional healers and outlines their

proficiencies. Throughout this dissertation, unless otherwise specified, the term shall be used

to refer to both kinds of practitioners. The ensuing discussion makes a compelling case for the

traditional healer. This is because the study is working on the assumption that its participants

have a strong inclination towards them. Thus, it is important to explore their apparent strengths.

Traditional Healer Strengths

One of the main benefits associated with traditional healers is their easy accessibility (Miller

2005; Muhamad and Merriam 2012; Mathibela et al. 2015). In communities where financial

resources are scarce, consultation with medical doctors is not always possible (Mathibela et al.

2015). Mathibela (et al. 2015) approximate that 72% of the continents population frequent

traditional healers. In South Africa where there is a dense rural population, it is believed that

between 70% and 80% of the inhabitants are alienated from public health institutions

(Mathibela et al. 2015). Thus, traditional healers are forced to function as “primary healthcare

givers” (Nelms and Gorski 2006: 184). Such statistics connote how vital their skills are to the

wellbeing of their patients.

Additionally, the economic implications of living with a disease, particularly one as

incapacitating as breast cancer, are generally overlooked (Steyn and Muller 2000). In the past

this has been identified as a significant deterrent to early diagnosis. A study which illustrates

this was conducted with Black African breast cancer patients in 1997 at the Groote Schuur

hospital (Wright 1997). It revealed that the patients had been reluctant to seek help early for

fear that they would “lose working hours...pay for child minders and public transport” (Wright

1997: 1543). For this group of women, the burden of breast cancer was easier to bear than the

prospect of being unable to fulfil these financial obligations. Findings such as this demonstrate

that traditional healers render a direly needed health service at a lesser fee. It is reasonable to

conclude that the financial reprieve they offer their clients contributes to their popularity.

19

As the main healthcare providers to people who may otherwise be rendered helpless, traditional

healers “perform a viable role in the lives of women...particularly those living in rural Africa”

(Nelms and Gorski 2006: 184). From this we can infer that they are their patients’ first source

of information about what might be a foreign disease to them. Thus, they play a critical role in

assuaging fears. This is partly because historically, the limited susceptibility of African women

to breast cancer resulted in very little research being conducted with them (Brinton et al. 2014;

Pillay 2002). As a result, awareness levels amongst this group tend to be low (Brinton et al.

2014; Pillay 2002). While the reliability and validity of the information traditional healers

impart may be debatable, it is probably reassuring for patients when their illness is given a

name and acknowledged as legitimate (Steyn and Muller 2000). Furthermore, traditional

healers always impart the same information as their medical colleagues. They emphasise the

importance of seeking treatment early and committing to it (Steyn and Muller 2000).

Additionally, there are instances where they acknowledge the limitations of their expertise

(Merriam and Muhamad 2013). When this happens, they encourage their patients to seek bio-

medical treatment. This is indicative of their commitment to the welfare of their patients.

Further, they are generally from the same area as their patients and possess an extensive

understanding of their socio-cultural reality (Mathibela et al. 2015). This intrinsic knowledge

of the surroundings enables them to tailor their bedside approach to suit the patient’s needs.

For instance, people in rural areas are typically more conservative. Thus, they would have

reservations about being examined by a physician who is not of a similar gender (Merriam and

Muhamad 2013). In rural Malaysia for instance, “seeing a male doctor is a nightmare

because…[patients] have to show their breasts…Malay is basically Muslim and they are shy

people, they don’t like to share problems with others especially those involving private parts”

(Merriam and Muhamad 2013:3597). Due to the bomohs4 being conscious of this discomfort,

they accommodate their patients by offering them treatment that adheres to social standards,

such as reciting prayers and “hoping that the cancer disappears… [thus]there’s no doubt people

will choose that way rather than surgery” (Merriam and Muhamad 2013:3597). Admittedly,

this approach could have negative long-term implications. However, it can be argued that it

allows patients to receive treatment that does not necessitate compromising their beliefs and

consequently their dignity.

4 Malaysian equivalent of the traditional healer

20

Furthermore, healers are sensitive to the spiritual needs of their patients, which is evidenced by

their ability to demonstrate genuine empathy towards patients thus forging a bond of deep trust.

Not only do they understand a patient’s background and thus their values, their prognosis is

typically more optimistic. “Traditional healers give people hope and treat patients as someone

who can be cured” (Muhamad et al. 2012:3). Typically, Western doctors lack this capacity to

ease the disappointment of a cancer diagnosis by focusing only on conveying the facts,

irrespective of how ominous they may be. Merriam and Muhamad (2013:3597) refer to

traditional healers as “emotional comforters” because their unwavering optimism enhances the

emotional wellbeing of the patients. Their study revealed that patients report feeling a sense of

hope, relief, peace and positivity, particularly if they sought treatment at what the healers

referred to as the ‘good’ (early) stage (Merriam and Muhamad 2013).

In addition to their engaging bedside manner, research indicates that traditional healers attempt

to create a strong support network around a patient early in the treatment process (Nelms and

Gorski 2006; Matatitiele and van de Heever 2008). In most cases, patients consult healers

based on the recommendations of family and friends (Muhamad et al. 2012). These parties are

then encouraged to be as involved as they can be during the entire treatment journey. To an

extent this alleviates the stress of the disease (Muhamad et al. 2012). Essentially, when the

weight of an illness is shared by a ‘community’ it “increases the patients self-value and

reinforces the patient’s relationship with the community”, thus cultivating feelings of

empowerment (Muhamad et al. 2012:3). To corroborate this further, Thornton (2015) argues

that traditional healers’ efforts to gather people together for their patients is motivated by their

holistic conception of well-being. They do not consider disease as perhaps an isolated group of

cells that infiltrate an individual’s body and then corrupt their immune system. Rather, they

regard it as a state of being that has other dimensions to it or a “web” (Thornton 2015: 367). In

order for the patient to fully heal, “they seek to treat these webs through mitigation of exposure”

(Thornton 2015: 367). Thus, they can be said to be all-encompassing in their approach because

they believe that both body, mind and spirit are inter-reliant and need to be balanced (Thornton

2015). Family and other support networks are thus vital to the attainment of this state of

equilibrium.

Conversely, medical doctor’s healthcare approach is not all encompassing. It focuses almost

exclusively on the individual and the cancer, thus alienating her from emotionally supportive

structures. Breast cancer patients fear the stark unfriendliness of the hospital environment, with

21

its stringent rules which restrict the extent to which their loved ones can interact with them. A

patient summed this coldness thus:

the hospital is not that friendly, the social part about it. We cut out the patients from the

family. You can only come visit your mother or sister from 1 to 2pm. If you come after 2pm,

you will be chased away. If you go to bomoh treatment…there’s no disruption with family

ties. The family members can come, discuss, talk and everybody’s involved (Merriam and

Muhamad 2013:3597).

Experts believe that it is this inability to encourage communal participation that leads to breast

cancer patients resisting biomedical treatment until it is too late (Nelms and Gorski 2006).

Washington (2010) is one of the most vocal supporters of cultural sensitivity and collectivism

during healing. He reasons that as humans we flourish when we are part of a supportive group

structure. Further, he maintains that those who are ill are even more spiritually vulnerable and

thus needier of encouragement in order to recover Washington (2010). From his assertions we

can deduce that this spiritual upliftment cannot occur in seclusion. As a result, we can conclude

that of the two, traditional healing offers the more nurturing environment.

Notions of Disease and Healing Amongst the Zulu: The Role of Ancestors

I now delve into the Zulu peoples’ conception of disease and the spiritual factors which inform

it. This is of utmost importance as the study’s participants are from this ethnic group. This will

be contrasted against the sentiments of other Third World communities. According to Muller

and Steyn (1999: 143) “Worldwide people have retained [their] indigenous health beliefs”. The

Zulu are a community that demonstrate the truth in this assertion. While the effects of

globalisation have permeated into virtually every facet of their lives, their health beliefs have

(to a large extent) remained constant. For example, the vast majority of contemporary Zulus

are aware of and place great emphasis on amadlozi/abaphansi, the ancestors (Washington

2010:29; Crawford and Lipsedge 2006:135). Essentially, they are spirit of the deceased who

are responsible for helping the living navigate their way through life (Washington 2010;

Crawford and Lipsedge 2006).

In the event that some individual dies far away from home, their family has the difficult task

of visiting the site of death, to perform a ritual which is believed to guide the spirit back to

them (Crawford and Lipsedge 2006). Failing to perform this ceremony may incur the wrath of

the deceased because they are believed to be lost in the spirit world (Crawford and Lipsedge

2006).In an attempt to draw attention to their predicament, the ancestor may then create

unfortunate events such as making a living member of their family ill (Crawford and Lipsedge

22

2006). Once the ancestor’s spirit is retrieved, it inhabits its old home (Hammond-Tooke 2008)

In order to connect with them, the living must visit “umsamo”, which is a sacred space in many

Zulu households (Hammond-Tooke 2008:64).

This ritual is an indication of the centrality of ancestors to a Zulu person’s life. It demonstrates

that despite no longer being physically present, the reliance on them for daily guidance filters

into every sphere be it health, finances, psychological well-being and so forth (Crawford and

Lipsedge 2004; Hammond Tooke 2008:64). Importantly, the ancestors are revered particularly

for their capacity to connect with uMvelinqangi (God) on one’s behalf and offer protection

from physical and social ills (Washington 2010). These stringent beliefs in their power may

explain the seeking of biomedical cancer health care at advanced stages.

While the Zulu are receptive to biomedical treatments to disease, they generally pursue

culturally acceptable resolutions first (Wright 1997). This requires communicating with their

ancestors. Opting to liaise with them before taking the biomedical route is due to the fact that

Zulu interpretation of disease causation is two-fold. They believe that there are “proximate

causes” which are its physical manifestations on the body (Mills 2005:132). In the case of

breast cancer, this would include symptoms such as lumps and the changes in the breasts’

appearance. Then there are “ultimate causes” (Mills 2005; Steyn and Muller 1999, Muller and

Steyn 2000), which: “cannot directly be explained in physical terms, some deriving from

supernatural entities such as spirits and others from stresses caused by the victim contravening

community morality of having a strained relationship with other community members” (Muller

and Steyn 1999:143). Ultimately, this demonstrates how disease is perceived to have a spiritual

component that is not of an earthly realm (Washington 2010). This is also considered as the

core cause of disease, which casts doubts about biomedical experts’ aptitude to treat it (Wright

1997).

The quotation also alludes to a person ‘inviting illness’ to themselves by having strained

relations with others. In such instances, the individual may have angered a community member

who practices sorcery or ‘ubuthakathi’ (Crawford and Lipsedge 2004:133; Wright 1997). It is

believed that various illnesses are caused by sorcery. The type one suffers from is often

determined by the tactic the sorcerer utilised. These can “include’ stepping over’ illnesses

known as umeqo,‘eating illnesses referred to as ukudlisa and ‘throwing illnesses’ known as

ukuphonsa”( Crawford and Lipsedge 2004:134).Umeqo refers to a sickness that the sorcerer

left on a pathway for the unsuspecting victim (Crawford and Lipsedge 2004:135). Ukudlisa

23

involves adding a substance in the victim’s food, which they ingest (Crawford and Lipsedge

2004:125). Once in the body, it reveals itself via symptoms that are associated with various

diseases (Crawford and Lipsedge 2004). Ukuphonsa entails ‘throwing’ the disease in the

direction of the victim (Crawford and Lipsedge 2004:125). This is the preferred method used

by sorcerers who are not within close proximity of their targets. However, the sorcerer must be

exceptionally skilled to execute this successfully, because the disease is transmitted via the

spiritual realm “while the victim is asleep and dreaming” (Crawford and Lipsedge 2004:134).

Treating Disease

The discussion above introduces the Zulu concept of disease from a spiritual angle. What

follows is an examination of the practical aspects, which are the actual logistics around its

treatment. The Zulu word for treatment is “ukwelapha” (Lerclec-Madlala 2002:8). According

to Lerclerc-Madlala (2002:8) “it refers to a comprehensive approach to illness that may include

prevention, cure and or simple palliative care and treatment of symptoms” (Lerclerc-Madlala

2002:8). This implies that like their Western peers; treatment approaches amongst Zulus are

determined by the progression of the disease (Steyn and Muller 1999; Muller and Steyn 2000).

The more advanced it is, the more intense the treatment becomes. That said, the treatments are

considerably less harsh than those favoured by the West.

The proximate (physical aspect of disease) is regarded as “dirt” or “pollution” that infiltrates

the body (Mills 2005; Lerclerc-Madlala 2002). Therefore, most treatment methods are designed

to extract it, thus curing the patient (Lerclerc-Madlala 2002: Mills 2005; 138). This ‘cleansing’

targets the entire body, not just the infected organ, therefore, it is perceived to be thorough

(Mills 2005; Lerclec-Madlala 2002). After consulting with an inyanga (herbalist or traditional

healer) to determine the spiritual source, patients are then furnished with a concoction of herbal

treatments which ‘purge’ the illness from the body (Mills 2005; 138). The inyanga’s herb

infused mixture is created to address the specific health needs of the patient (Muller and Steyn

2000). Prior to preparing it, the inyanga consults the ancestors for “permission… to divulge

the names of the herbs” that must be included (Steyn and Muller 2000:6). These herbs are

believed to be potent because they have not been processed, thus their healing properties are

intact (Steyn and Muller 2000). Typically, it is this unproven potency that causes strain between

traditional healers and Western doctors.

24

Traditional vs. Biomedical Healing: Tensions between Two Worlds

The controversy between the bio-medical and traditional approaches to treating disease is well-

documented (Thornton 2015; Tomaselli 2011; Muhamad et al. 2012). Often, the former were

hailed as being more innovative, whilst the latter were denigrated (Muller and Steyn 1999,

Tomaselli 2011). In South Africa, the tension between the two healing communities was

palpable. However, successful communication has ameliorated the poor relations by fostering

mutual respect and understanding between them (Tomaselli 2011). The discussion below will

interrogate several key differences between traditional and bio-medical approaches to healing.

The purpose of this is to highlight the fact that neither treatment route is superior to the other.

Both have strengths that can be developed for the wellbeing of cancer patients and weaknesses

that need to be rectified.

Contested Competency Levels

One of the most pertinent factors that fuelled the conflict between the two worlds is the dubious

competency of the traditional practitioners (Tomaselli 2011). For biomedical health

professionals, the process of acquiring medical skills is transparent (Mathibela 2015). It is

common knowledge that they are subjected to intellectually gruelling tuition at tertiary

institutions for many years. This scholarly training is supplemented with practicals that force

them to familiarise themselves with every facet of the human body. It is only after they have

demonstrated excellence during this rigorous science based grooming, that they are considered

as experts who have the skill-set required to treat patients (Mathibela et al. 2015).

Conversely, the path followed by traditional healers is not as clearly delineated (Tomaselli

2011). Often, the individual does not consciously choose to practice healing. Instead, they are

allegedly endowed with the skills by forces from the spirit world. In some cases, the gift of

healing is evident at childhood and is honed by traditional healer parents as soon as they

recognise their child’s potential (Nelms and Gorski 2006). It is believed that:

If the calling is manifested later in adulthood, signs materialise as a prolonged illness

characterised by symptoms that may include dreams, hallucinations...and or the inability to

concentrate. In particular, females may experience a history of perceived barrenness or the

death of their children. (Nelms and Gorski 2006:185)

Different parts of the world refer to this spiritual selection by different names. Some

communities refer to it as “mudzimu, meaning possession by an ancestral spirit” (Nelms and

Gorski 2006:185), while the Zulu call it “ukuthwasa” meaning “life transforming experience”

(Washington 2010:28). Additionally, while some traditional healers have been known to

25

undergo some form of apprenticeship from a fully-fledged healer, the specifics of this training

are not always common knowledge (Mathibela 2015). Further, there appears to be little

uniformity in procedures such as determining the proficiency of the trainee. In Burma,

Myanmar for example, those who follow the traditional healing path acquire their knowledge

from “oral teachings through their elders” (Oleson and O’Fallon 2012:46). Once they

demonstrate a suitable level of compassion for people which is believed to occur after the age

of thirty, they are then deemed adept enough to practice (Oleson and O’Fallon 2012).

Robert Thornton (2015) is a lone voice that strongly defends the validity of the traditional

healer training process. He argues that contrary to popular misguided belief, there is evidence

that the grooming that they are subjected to is physically and psychologically strenuous. He

states that although healers often vaguely attribute their skills to their ancestors, the actual

logistics of obtaining them involves “intensive regimes of teaching and of intense disciplines

of dance, music, ritual practice, and travel” (Thornton 2015: 367). In some instances, healers

mention acquiring their skills “underwater”-a metaphor for deep knowledge and trance

induction-that signifies travel from other forms of consciousness” (Bernard 2013 in Thornton

2015:367). To further validate his argument Thornton (2015), draws upon government

documents and anecdotal reports from travellers and missionaries who have encountered them,

as they were literally on the road to fulfilling their training requirements. The core point appears

to be that while traditional healers have shortcomings when evaluated according to scientific

standards, qualifying to join their community is a feat that requires physical stamina and the

aptitude to transcend regular mental functioning.

This highly subjective and mystical route to expert level defies the quantifiable logic of their

Western counterparts. Further, it appears that South Africa is not the only country where

perceptions of biomedical supremacy exist. A recent study conducted in West Bengal India

highlights this further. It was initiated to assess the competency of rural medical practitioners

(RMPs) against their medical colleagues (Mondal 2015). Based on an evaluation of their skills,

it can be argued that RMPs have many similarities to traditional healers: They attend to

underprivileged communities, except for observing medical doctors intermittently, they have

no formal medical education, they heal various debilitating diseases through a combination of

faith-based remedies and what Mondal (2015: 3) refers to as an “inappropriate prescription of

drugs”. This reference single-handedly signifies the inferiority undertones about healers and

their ability to render health services efficiently.

26

This perceived absence of rationality in traditional healing engendered mistrust from their

biomedical peers. This culminated in organisations such as Doctors for Life (DFL) labelling

traditional healing practices as “unhealthy [and] dangerous” (Nelms and Gorski 2006: 146).

These accusations were accompanied by demands that they should be subjected to thorough

scientific evaluation (Nelms and Gorski 2006). Thornton’s (2015) work implies that the source

of such hostility is merely the inability to fully appreciate the idiosyncrasies of an alternative

healing approach.

Sensing this devaluation of their skills, the traditional healer community became apprehensive

of biomedical doctors. They learned to be vigilant and protective of their healing methods to

the extent that the prospect of collaboration, which they had initially been receptive to,

appeared impossible rev Muller and Steyn (1999: 146) confirm this hesitation by stating that

“traditional healers are generally interested in co-operation, training and supervision, although

they are wary of the risk of legal actions, taxes and humiliation that may result from contact

with medical doctors”. In addition to these concerns, traditional healers feared exploitation

from the medical community which would entail misuse of their indigenous knowledge and

eventually lead to its extinction (Muller and Steyn 1999:146). As a result of this suspicion,

“healing [became] a well-guarded family possession... handed down through the generations,

from one family to the next” (Nelms and Gorski 2006: 185).

Despite these initial misunderstandings between these two medical parties, several scholars

have written extensively about a renewed interest in collaboration (Mills 2008; Campbell-Hall

et al. 2010). The common thread revealed by these studies is that both types of practitioners

have vastly different approaches to healing, but they prioritise their patients’ healthcare needs.

Scholars such as Thornton (2015) use their years of ethnographic experience with South

African traditional healers to justify the interrelatedness of both these medical fraternities.

Thornton (2015) an anthropologist, spent over a decade closely observing a sangoma from a

quaint area in South Africa’s Mpumalanga region. He relinquished his academic bias in order

to fully immerse himself into the experience of living with a figure that represents a field that

is simultaneously revered and misunderstood. In his paper he argues that whereas some

researchers consider traditional methods as one of numerous alternatives to healing, that is

medical pluralism, he considers it parallelism (Thornton 2015). This means that “both work in

parallel to each other, at the same time, as part of the same process” (Thornton 2015: 354). My

27

own interpretation is that it refers to the degrees of similarity between biomedicine and

traditional healing.

Thornton (2015) argues that while the instruments and concoction of the medications used may

differ, both fields have characteristics that mirror each other. For instance, both have a degree

of uncertainty, meaning that they operate based on chance (Thornton 2015). To this end, it can

be concluded that “with few exceptions, nothing works for all, every time, and forever”

(Thornton 2015: 356). Secondly, the workings of both fields always have an audience of

sceptics who are there to identify and then magnify each failure (Thornton 2015). For example,

it is not uncommon to hear reports of a patient succumbing to chemotherapy or, dying after

seeking what the medical community consider ‘alternative’ treatments. Further, Thornton

(2015) states that because of the unpredictability of health, practitioners from both fields take

protective measures: lawyers and iron clad clauses for medical doctors and centuries of

mystique for traditional healers. In sum, it appears that acrimony between the two worlds is

largely due to an intolerance of difference and an unwillingness to acknowledge that the vision

of healthy communities is a mutual one.

Overall, the Zulus’ understanding of disease and healing is informed by an amalgamation of

spiritual, historical, cultural and psycho-social elements (Crawford and Lipsedge 2004).

Biomedical options may be the most advocated treatment option; however, it is unlikely that

they would suffice on their own amongst the Zulu. They might be touted as more effective, yet

they have been “imported” into this community. Therefore, they have no concrete connection

to them beyond the obvious one. Their curative properties are a poor substitute for the

psychological and spiritual rewards that traditional healing appears to possess. In sum, the

discussion corroborates Mdondolo’s (et al. 2003) finding that cultural recognition is a

precondition for the acceptance of external knowledge and healing methods.

Breast Cancer from a Global Perspective

The breast cancer phenomenon has captured the interest of researchers from all over the world.

While the findings vary on occasion due to contextual differences, there are facts that are

constant irrespective of where one is on the globe. Below is a brief summary of the key areas

of concurrence amongst breast cancer researchers:

Firstly, there are massive disparities in the levels of breast cancer awareness across

geographical locations (Ngoma et al. 2015; Cubasch et al. 2013, Matatitiele and van de Heever

2008). In the developed world where information is readily available, the severity of breast

28

cancer is widely understood (Ngoma et al. 2015). According to Sally Thorne and Carol Murray

(2000:143), in the West breast cancer was once perceived as a “dirty secret”. Today however,

women are allegedly so inundated with information, they cannot help but be “overwhelmed by

the sheer volume” of it all (Thorne and Murray (2000:143). As a result, their screening patterns

are higher, which translates into their mortality rates being lower (Opoku 2012; Formenti et al.

2012, Brinton et al. 2014).

In poorer countries where people have to contend with challenges such as the digital divide,

and inadequate resources, researchers unanimously agree that more needs to be done to impress

its gravity upon the masses (Meneses and Yarbro 2007; Matatiele and Van den Heever 2008;

Porter 2008; Wadler 2011; Opoku 2012; Formenti et al. 2012). That being said, even in these

affluent countries, breast cancer cognisance varies across racial lines (Wadler et al. 2011).

White women tend to be more aware of the risks it poses presumably because historically, they

were more susceptible to it than women of colour (Forte 1995; Pillay 2002). Further, it has

been established that Black women demonstrate lowered adherence to “recommended breast

cancer screening guidelines” (Sadler 2007:2). This inability to conform is believed to

contribute to the obstinately escalating mortality rates (Forte 1995; Sadler et al.2007; Pillay

2002). The spread of the disease is fuelled by a variety of constraints such as limited exposure,

fatalistic beliefs, spirituality and culture (Forte 1995; Taylor 2001; Orgard 2006; Sadler 2007).

These findings indicate that there is a great need to address the information gap amongst this

group.

Significantly, researchers in this area are continuously advocating for culture to be considered

during breast cancer communication interventions (Wright 1997; Mdondolo et al. 2003; Taylor

2001; Morgan et al. 2008; Opoku 2012). Kline (2007:85) asserts that “cultural influences are

extremely salient for health educators because culture shapes perceptions and practices with

regard to health, illness and medicine and mediates responses to health education information”.

Essentially this means that an individual’s perceptions of an illness and the measures they take

to address it are not constructed in isolation (Kline 2007; Petraglia 2007). They are influenced

by variables that emanate from their cultural environment. Koffman (et al. 2008: 350) surmises

the role of culture thus: “culture assumes great significance in people’s lives because it involves

a conceptual scheme or recipe for making sense of the world and of differences between

individuals”. From these statements we gather that culture underpins peoples’ understanding

of the world. Thus, we can deduce that if health communication efforts are to resonate with an

29

audience, those developing them need to have a strong appreciation of their specific cultural

background.

To illustrate this, using findings from an older study, Forte (1995:180) stated the following:

“[Black]… women are less likely to assimilate into mainstream European culture. Instead, they

tend to adhere to traditional cultural beliefs and values that may not recognise the utility of

mammography or BSE”. From this we get a sense of how culturally approved beliefs and

values can be upheld and condition a person to resist adopting preventative measures, even if

they have proven efficacy. We can gather that expecting people to adopt behaviour

(irrespective of whether it is helpful or harmful) is a futile exercise if it does not make sense to

their way of life and who they perceive themselves to be. Granted, this is a finding from a dated

study, however it demonstrates the potency of cultural values.

The centrality of cultural awareness as a prerequisite for successful breast cancer

communication is validated further in a study that was conducted on African soil:

In most developing countries, women appear to take a lower priority in society than men,

leading to the management of female related cancers such as breast cancer being

underfunded and lacking the urgency for screening and treatment seen in many Western

countries. It is therefore important to involve husbands in cancer educational programmes

so that they support their wives and prevail on them to adopt early detection activities, in

order that they seek early treatment (Opoku et al. 2012:2)

The excerpt above indicates that within some conservative social settings, there exists

controversial cultural norms. We see that patriarchy dominates and female inferiority appears

to be culturally endorsed (Mdondolo et al. 2003). In some parts of the world, this would be

polarising. It may even propagate the spread of breast cancer because there is no cognitive push

for women to get examined early. Such subtle differences that are embedded in the cultural

fabric can be easily disregarded if the willingness to be perceptive and (to an extent) receptive

to them is absent.

In South Africa, the scant research about breast cancer makes reference to “culturally

congruent” communication (Mdondolo et al. 2003:87). It has been discovered that while

economic limitations, language and lack of proximity to health facilities hinder awareness,

cultural beliefs and practices tend to be the strongest barriers (Wright 1997). Also, it has been

reported that upon suspicion of a cancerous lump, local women seek traditional counsel first

because biomedical doctors are considered to be “unfamiliar and harmful” (Wright 1997:1540).

This was evidenced by reports of breast cancer patients constantly absconding from oncology

units at public hospitals (Wright 1997). It was suspected that they were unwilling to risk having

30

medical equipment prodding them and ‘distributing’ the cancerous cells throughout their body

(Wright 1997). Additionally, medical staff were reportedly patronising to patients who were

misinformed about cancer (Wright 1997). Unlike their traditional colleagues, medical doctors’

focused on conveying the cancer prognosis factually, thus their approach lacks an emotionally

supportive component (Mdondolo et al. 2003). It is partly this seeming lack of cultural

sensitivity that has concealed facts and fuelled apprehensions, leading to patients’ reluctance to

seek accurate information.

Overall, the majority of the scholars who have devoted themselves to researching breast cancer

are conscious of its global impact. They recognise the risk factors that increase the probability

of women developing it and are in favour of promoting preventative measures. Importantly,

their findings highlight that adopting a culture centred approach to cancer communication, is a

critical step to effecting concrete changes.

Causes of Breast Cancer Invisibility in South Africa

The social murkiness of breast cancer has been mentioned several times. The chapter now

presents a succinct discussion of the elements that may contribute to the disease’s opacity in

the broader developing world and more specifically in South Africa.

Resource Scarcity

It appears that the core cause of breast cancer invisibility in the Third World is resource

poverty. While developed countries have made outstanding strides towards improving breast

cancer prevention, detection and treatment efforts, the same cannot be said for countries at the

margin (Newman et al. 2015; Kingham et al. 2013:158; Stefan et al. 2013). For instance, breast

cancer imaging5 is considered to be a crucial aspect of diagnosis and is readily available in the

First World (Kingham et al. 2013). Conversely, it is almost non-existent in developing

countries and clinical examinations generally substitute this standard cancer detection practice

(Kingham et al. 2013). While these examinations are effective, they are not as precise as

imaging6 (Kingham et al. 2013). This unavailability of what can be considered as basic medical

equipment, is a glimpse into the difficulties that contribute to breast cancer fatalities in the

Third World (Kingham et al. 2013; Stefan et al. 2013; Opoku 2012). Evidently, the Third

5 This refers to the breast magnetic resonance imaging (MRI) which “uses a magnetic field to create an image of the

breast”. Therefore, it is more sophisticated than a standard mammogram. Info available: http://ww5.komen.org/BreastCancer/BreastMRI.html Date accessed: 2016-09-08

31

World is under immense strain as it strives to contain an unrelenting health menace with paltry

resources. Consequently, activities that should be prioritised such as breast cancer promotion

are neglected (Brinton et al. 2014). In the long term this inadvertent disregard contributes to

the silence and vagueness of the disease because the public cannot converse on an issue they

know nothing about.

CANSA

In South Africa, another possible barrier to breast cancer consciousness may be that there

appears to be only one prominent organisation that is responsible for equipping the public with

information about the disease. That entity is the Cancer Association of South Africa (CANSA).

There are other commendable parties such as the Breast Health Foundation7 who contribute to

the breast cancer cause. However, CANSA commands greater influence. It is imperative to

briefly profile CANSA because of their immense and consistent input to the breast cancer issue.

CANSA is a pillar of seemingly infinite strength to breast cancer survivors and their families.

No other organisation secures as many resources and mobilises the South African public into

a cohesive unit that is committed to battling cancer, as much as CANSA. I would argue that

without their presence and immeasurable support, the breast cancer mortality rates would

probably be higher.

CANSA was established in 1931 by a team of tenacious individuals who recognised that there

was a need for the cancer issue to be brought into the public domain (CANSA Annual Report

2011-2012). It is a registered non-profit organisation (NPO) (World Cancer Day 2015).

Raising awareness about various types of cancer has always been the principal goal of CANSA.

However from my vantage point, the South African public strongly associates them with breast

cancer. For 87 years CANSA has utilised every resource available to draw attention to the

disease and to provide services to survivors and their families. These efforts are particularly

salient for survivors from underprivileged communities. CANSA prides itself on approaching

“breast cancer awareness and treatment holistically” (CANSA Annual Report 2011-2012). They

recognise that successfully managing the condition involves more than the provision of

resources. It entails enlisting the support of the broader community and encouraging them to

share in the responsibility of managing it. This vision of a united and compassionate society is

the inspiration behind initiatives such as CANSA’s annual Shavathon (CANSA Shavathon

2013-2015). During the event, members of the public are invited to either shave or to spray

7 Details about this organisation are available at: https://www.mybreast.org.za/ , Accessed: 12 July 2016

32

their hair with colour in order to demonstrate solidarity in the cancer battle. CANSA targets

public places such as shopping malls and work places where people voluntarily participate in

the initiative. Over time, Shavathon campaigns have grown in popularity and have become

one of the most highly anticipated breast cancer awareness initiatives (CANSA Shavathon

2013-2015).

In their quest to be at the forefront of cancer management, CANSA funds various scientific

research endeavours. Annually, approximately 6 to 12 million rands is donated to investigating

measures that can be adopted to strengthen the response to the disease” (CANSA Annual Report

2011-2012). Additionally, more than R600 000 is allocated to researching the effects of

environmental carcinogens (CANSA Annual Report 2011-2012). All these research initiatives

reveal new breast cancer risk factors and enable CANSA to produce tangible evidence to

support its advocacy efforts (CANSA Annual Report 2011-2012). In this watch dog role, the

organisation often appeals to the South African government to institute policies against harmful

products that increase the public’s risk to the disease.

In sum, the discussion above does not adequately capture the full scale of CANSA’s work. It

merely grazes the surface by underlining some of their past successes. The purpose of profiling

them was to highlight the fact that when a lone entity has the Sisyphean task of alerting the

masses to a health threat, the result may not be as impactful as desired. Conversely, a health

concern such HIV/AIDS is continuously publicised by numerous South African organisations

such as the Soul City Institute for Health and Development Communication, the Treatment

Action Campaign (TAC), and LoveLife South Africa. The incessant knowledge dispersal

ensures that people from all sectors of society eventually become experts on HIV/AIDS. Often,

the initially voracious absorption of information on HIV eventually deteriorates into fatigue.

For as long as CANSA remains the sole dispenser of breast cancer knowledge, it is highly

unlikely that the South African public will ever acquire the status of subject matter experts on

it. It is more likely that the issue will continue to remain below the veil of public consciousness.

Breast Cancer vs. High Priority Diseases

Another contributor to the apparent side-lining of the breast cancer crisis, is that the African

continent has to contend with various health issues that threaten to deplete governmental health

budgets (Cubasch et al. 2013; Reddy 2017; Langenhoven et al. 2016). Most health

communication efforts are channelled towards curbing easily communicable diseases such as

HIV/AIDS and Tuberculosis (TB)(Stefan et al. 2013). Breast cancer is as deadly as any of these

33

maladies if untreated. However, it is considered a lesser priority presumably because it lacks

the infectious component. In South Africa for example, breast cancer enjoys the support of the

country’s “First Lady, Her Excellency Madam Tobeka Stacie Madiba Zuma, who serves as the

Vice Chairperson of the newly-formed Forum of African Ladies Against Breast and Cervical

Cancer” (Wadler et al. 2011:1). Despite advocacy from this prominent champion, it can be

argued that it is not as noticeable nor as deeply ingrained into society’s minds as a legitimate

health threat, in the manner that HIV/AIDS are (Stefan et al. 2013; Langenhoven et al. 2016).

In no way is this statement intended to deride the sincere attempts at inscribing the threat of

breast cancer into the public domain. It merely seeks to highlight the fact that many of these

initiatives are implemented with the hopes that they will raise mass awareness and inspire

positive behaviour changes. However, they often fall short of these goals and are relegated to

the side when a seemingly more urgent health issue surfaces.

I will once again utilise CANSA to illustrate my point. In 1993, CANSA hosted a workshop

to formulate an action plan for managing breast cancer (Stefan et al. 2013). This initiative was

inspired by recommendations that were suggested by the World Health Organisation (WHO)

and notable attendees included representatives from various medical schools and the Medical

Research Council (Stefan et al. 2013). Unfortunately, the opportunity to implement the ideas

that were discussed at the workshop never presented itself. This was due to HIV/AIDS and TB

siphoning off a huge portion of the Department of Health’s budget (Stefan et al. 2013). Overall,

it can be surmised that presently Africa and South Africa are facing a formidable opponent in

breast cancer. Unfortunately, they appear ill-equipped to conquer it because of the scramble to

contain the spread of more pressing diseases.

Global Culture Inspired Breast Cancer Stereotypes

Notions of Feminine Propriety

An underlying theme in most breast cancer literature is the martyr role that society has

constructed for women. They are often the pillars of their families and appear to be conditioned

to demonstrate resilience, even under circumstances where their vulnerability should be

honoured. They are expected to silently occupy the roles of wives and mothers without a hint

of vulnerability, due to fearing that their perceived ‘weakness’ will invariably lead to the

disintegration of their families (Remennick 2006). This pressure for women to withstand the

effects of breast cancer in dignified silence dates as far back as the Victorian Era which “created

the romanticist ideal of the “angel in the house”, the ethereal woman whose purpose in life was

34

to serve as the ornamental (and dependent) symbol of her husband’s status” (Thorne and

Murray 2000:146). This pressure to conform to society’s conception of the untarnished,

submissive wife would not allow even the most confident woman to speak out about her

diagnosis. During this period, the patriarchal society interpreted the silence they forced on

breast cancer patients as them being responsible and protecting the rest of their family members

from the bad news. “In this way, they remained the “angel in the house” even under the most

trying of circumstances” (Thorne and Murray 2000:146).

To illustrate this further some women have reported being wary of the social stigma that is

attached to being a breast cancer patient (Bell 2014; Wright 1997; Meneses and Yarbro 2007).

The literature indicates that acknowledging their cancer diagnosis is tantamount to publicly

admitting that they are fragile and pitiful. Thus, they feign strength and suffer quietly. So

intense are these social beliefs that some women have resigned themselves to accepting breast

cancer as a godly curse, while others do so for fear that speaking out will limit their marriage

prospects (Nelms and Gorski 2006; Meneses and Yarbro 2007).

What may make it particularly difficult for Zulu women to discuss breast cancer are the

negative stereotypes their bodies engender. While it is healthy, “the female body is the

acknowledged site of male sexual pleasure and the “nest” within which new members of the

patrilineage are nourished and grow, and from which they are brought forth” (Lerclec-Madlala

2001:541). Viewed through this cultural lens, we can infer that a female body is considered

appealing if it can satiate a man’s sexual desire and is fertile enough to bear children. However,

these perceptions change when a woman becomes sick. What was once considered as desirable,

is now regarded apprehensively as a vessel that harbours “metaphorical dirt” (Lerclec-Madlala

2001:541).

Further, within the Zulu community there exists a prevalent belief that women’s bodies,

(particularly those who are sexually active) should be approached with caution due to their

capacity to deplete a man’s strength and “bring all manner of misfortune to society” (Lerclec-

Madlala 2001:541). Essentially, an ailing female body is understood to be a site of “umnyama

(darkness)” until such time that the illness invading it is extracted (Lerclec-Madlala 2001: 541).

In her work, Harriet Ngubane (1977) deconstructs this unfortunate state of being. In addition

to equating it to death, Ngubane (1977:274) purports that this condition “is conceptualised as

a mystical force which diminishes resistance to disease, creates conditions of misfortunes,

disagreeableness and repulsiveness”. In order to protect others from being tarnished by

35

umnyama, those individuals who have been accursed with it must go into a reclusive state

known as “ukuzila” (Ngubane 1977:274). During this period, they should ideally remove

themselves from the public domain, forego all pleasurable activities and unless necessary,

avoid speaking (Ngubane 1977). Ngubane (1977) is of the opinion that women are most likely

to be afflicted by umnyama because they are more vulnerable to mystical influences than men.

The breast is both a sexual and reproductive organ. Therefore, based on the discussion above,

we can deduce that when it becomes cancerous, its capacity to evoke a man’s desire and to

nourish children diminishes. It suddenly makes him susceptible to contamination from

umnyama (Lerclec-Madlala 2002; Ngubane 1977) Thus, we can gather how as a woman,

coping with the realisation that such a vital part of your body is now regarded with abhorrence,

may be exceptionally difficult. Further, a socio-cultural environment with such swiftly

changing beliefs is not conducive to open communication about the realities of breast cancer.

Chauvinism and the breast cancer crisis

The discomfort with an ailing female body is a long standing social issue. Even in the West

women’s bodies were once considered as mediocre replications of their male counterparts

(Schulzke 2011). Unlike the male body which was regarded as virile and resilient, the female’s

body was fragile. These perceptions were not informed by spirituality or superstition like in

developing countries. In fact, the early chauvinistic conceptions of the female anatomy and

course of treatment once it became diseased, were grounded in medical science. “The cause of

breast cancer was thought to be women’s inner pollution, her “dark brains” and the treatment

was to excise the offending parts” (Thorne and Murray 2000:146). Essentially, it was believed

that a woman had only herself to blame for developing breast cancer since her body was its

source. Therefore, if her cancer distressed her, the onus was on her to have the breast removed

via “a super-radical mastectomy” that was popularised by surgical professor William Halsted

(Thorne and Murray 2000:145).

The operation involved severing “not only the breast, but also the muscles of the chest wall,

the lymph glands and all the surrounding tissue” (Thorne and Murray 2000:145). The results

of this butchering were a hollowed chest and in many cases patients had to endure a condition

known as ‘milk arm’ where poorly circulated lymph fluid would collect in the arm (Batt 1994

in Thorne and Murray 2000). Side effects of these extreme mastectomies have been known to

spread to other organs. Additionally, they caused severe psychological damage to the patients

(Schulzke 2011). While Halsted’s procedure was eventually denounced for the physical

36

maiming that it was, less drastic mastectomies were still considered as the most effective

alternative (Schulzke 2011).

When the female hormone oestrogen was found in 1920, the biomedical community had even

more seemingly indisputable evidence which could support their claims of female frailty

(Thorne and Murray 2000). The word estrogen8 is derived from the “Greek “oistros” and

“gen”, “meaning” “frenzy” and “begin” … (the comparable male hormone, androgen, merely

denotes “the man begins” (Thorne and Murray 2000:147). The former was understood to

signify the beginning of hysteria or a hormonal imbalance in females, while the latter term

denoted the beginning of masculinity (Thorne and Murray 2000). According to S. Bock (2013)

the mention of hysteria implies an outward demonstration of emotion, which was seen in a

negative light in the West. It was considered as a “dangerous force that need[ed] to be

controlled” (Bock 2013:154). Further, its presence was “equated with the irrational rather than

the rational, the chaotic, rather than the ordered, the female rather than the male” (Bock

2013:154). These beliefs were perpetuated by the predominantly male medical professionals

who now believed they had the “scientific license” to disregard the female body (Thorne and

Murray 2000:147).

Even in present day, the pattern of women being considered passive observers, while their

bodies are prodded impersonally during medical examinations persists. Some scholars have

condemned this kind of treatment because they believe it infantilises patients (Thorne and

Murray 2000; Schulzke 2011). They cease to be intelligent adults and are reduced to a childlike

state where they are almost wholly dependent on their doctors. A study conducted by Trudel

(et al. 2013) is indicative of the disregard for patients’ voices that reportedly occurs in many

doctors’ consultation rooms. It focused on a sample of French-speaking breast cancer patients

in order to examine how doctor-patient communication affects their health-related quality of

life (HRQOL) (Trudel et al. 2013:1). Further, even the older studies that they reviewed revealed

that in the past, many breast cancer patients had reported that there were patriarchal

undercurrents to their encounters with male doctors (Trudel et al. 2013). This project was

inspired by the researchers’ conviction that reciprocal communication between patients and

doctors is the “cornerstone of patient care” (Trudel et al. 2013:1). This statement implies that

a sensitive bedside manner which recognises that patients are present both physically and

psychologically in the room, is the pillar upon which quality health care rests. Further, the

8 US spelling. Alternatively, this is spelt as “oestrogen” in South Africa

37

researchers strongly believed that a welcoming bedside approach facilitates the revelation of

patient fears and enhances feelings of control over their health (Trudel et al. 2013). A notable

finding from this project is that patients “perception of their own ability to communicate with

physicians in oncology is a better predictor of their HRQOL as compared with the women’s

perception of the physician’s communication abilities” (Trudel et al. 2013:537). It suggests

that there are positive implications for breast cancer patients when they feel that they can assert

themselves verbally during their consultations with doctors. In fact, it implies that it is the

patient’s beliefs, not their physician’s that determines whether their condition deteriorates or

improves.

Sadly, the controversial perceptions of breast cancer and the female body exist throughout most

of the globe. The relatively small number of studies that have been conducted in developing

countries about the psychosocial effects of breast cancer diagnosis indicate this (Odigie et al.

2012; Alicikus et al. 2009). In Uganda for instance, the belief that cancer is “universally fatal”

and could lead to abandonment by one’s husband and family was cited as one of the key reasons

for non-disclosure (Koon et al. 2013:3). This fear consumes women to the extent that some

have reportedly declined mastectomies in favour of death, because their husbands would not

accept them once they were disfigured and therefore mutilated in their eyes.

In Nigeria, this fear of being discarded has reportedly led to women remaining silent and only

seeking medical treatment once the cancer has metastasized and there is an odour emanating

from their fungated breast (Odigie et al. 2010). In that part of the world, the women typically

receive minimal education and marry early. In this way, they become financially dependent on

their husbands. Once this happens, a woman’s “primary task [becomes] bearing and rearing

children… [and] traditionally [she is] obligated to fulfil all of her husband’s sexual and

reproductive wishes” (Odigie et al. 2010: 894). However, in the event of a breast cancer

diagnosis and its subsequent treatment she may not be able to perform these wifely duties. This

is due to the fact that chemotherapy triggers premature menopause which leads to “poor sexual

functioning, particularly in younger women” (Alicikus et al. 2009: 213).

Significantly, in Nigeria (and many other developing countries) polygamy is a popular practice.

Therefore, there have been cases where new wives have been integrated into the household

after the older wives’ cancer diagnosis (Odigie et al. 2010). This has various negative

implications which further impede women’s eagerness to discuss breast cancer openly. Firstly,

the introduction of a new female into a marriage, due to cancer, has been known to undermine

38

patients’ sense of femininity (Odigie et al. 2010). This rejection often results in “a decrease in

affection from their husband…difficulty breastfeeding with a single breast…and feelings of an

altered sense of body image with only one breast” (Odigie et al. 2010:895). From this we can

gather that life becomes infinitely difficult for some breast cancer patients once their diagnosis

becomes public. We gauge how men may sometimes devalue them as ‘complete’ women who

are capable of executing what is perceived as their ‘duties’ of fulfilling sexual needs and

bearing children. This shift from being a highly appreciated member of a household to being

inadequate and replaceable validates the patients’ reluctance to disclose their diagnosis early.

Identity Maintenance and Reconstructive Surgery

The discussion above illustrates how females with breast cancer have continuously been at the

mercy of patriarchal dictates. It demonstrates how over the centuries and across most societies,

men have influenced how women detect, treat and communicate about the disease. This is

despite the fact that it is the women who have to cope with its physical effects. The discussion

that follows will examine how these largely male defined notions of the ideal female body and

other variables have influenced breast cancer patients’ decision to have reconstructive surgery.

While there are various factors that determine whether a woman who has undergone a

mastectomy will undertake reconstructive surgery, the most commonly cited one is the need to

restore normalcy (Rubin and Tanebaum 2011; Riba 2014). Society has yet to adjust to the idea

of a one breasted woman as normal (Ribas 2014). Also, the female body is constantly subjected

to what Lisa R. Rubin and Molly Tanebaum (2011: 410) refer to as the ‘male gaze’. This refers

to men’s visual interpretation of what is perfect and what is flawed. In fact, the only females

who are exempted from normalcy as defined by male eyes, are those from the lesbian, gay,

bisexual and transsexual (LGBT) community (Rubin and Tanebaum 2011). Women who are

at optimum health constantly modify their appearance in order to conform to beauty standards

that are defined by men (Schulzke 2011). Thus, one can understand the enormous stress

experienced by women whose bodies have been drastically ravaged by breast cancer treatments

such as mastectomies.

The rapidity at which women seek out reconstructive surgery is also fuelled by the need to

maintain their sexual identity (Rubin and Tanebaum 2011). As mentioned in the previous

chapter of this study, the breasts are visual confirmation of one’s gender (Schulzke 2011;

(Rubin and Tanebaum 2011). They have always been associated with sexuality. However, due

to formerly traditionalist social norms, their capacity to entice members of the opposite gender

39

was overlooked. Instead, the focus was on their “reproductive capacity” (Schulzke 2011: 46).

With the advent of globalisation, most societies have become more sexually liberal. The

extreme fascination with breasts as sexual objects is an example of how this newfound

liberation manifests itself. Schulzke (2011) states that breasts have now become signifiers of

beauty that women have to maintain, in order to be considered as aesthetically appealing. This

obsession with attractiveness is so intense that it even motivates scores of cancer free women

to get breast implants. Those who have undergone mastectomies are arguably under even more

pressure and this is evidenced by the fact that between 1965 and 2000, an estimated 700 000

of them sought reconstructive surgery (Schulzke 2011).

Whilst a woman is still contemplating the surgery, she is almost immediately supplied with

breast prosthesis in order to convey her femininity to the world (Schulzke 2011). Based on the

literature it is almost as if society believes that the removal of a breast is an affliction that will

hover over them eternally, unless they quickly ‘cure’ it with surgery. Furthermore, a

willingness to do this quickly solidifies an individual’s status as a warrior who faced the

prospect of life as a disfigured shell of themselves, only to emerge “on the survivor side,

actually prettier, sexier, more femme” (Ehrenreich 2001:49).

Scholars such as Rubin and Tanebaum (2011) question the wisdom of exerting pressure on

women to undergo reconstructive surgery. They integrate the voices of various survivors into

the discussion as they attempt to qualify how the essence of a woman is not determined by her

breasts or lack thereof (Grimes and Hou 2013). To this end, they employ their findings to

underscore the fact that there are breast cancer survivors who enjoyed having breasts but did

not consider their sexuality and femininity as being inextricably bound to them. A respondent

named ‘Rebecca’ surmised her perception of them thus:

I always felt like my breasts were a costume, because they were so big and they were-

kind of campy. I got used to them, to the point where I actually really liked them and

dressed them up and you know flaunted cleavage and all that kind of thing ‘cos it was

fun. But I never really felt that, at core, I was a big boob person. You know? (Rubin and

Tanenbaum 2011:408)

Based on the excerpt, we can deduce that the respondent initially considered her breasts as

slightly inconvenient appendages. Gradually, she developed an affinity for them and began

accentuating them through her clothing choices, purely because she enjoyed it. However, from

the latter portion of her words, it appears that she does not regard herself as incomplete without

them nor does she consider them as markers of her identity.

40

Another respondent remarked that her choice to decline a mastectomy gave her freedom from

the scrutiny of the male gaze which dictates who qualifies to be a fully-fledged, desirable

female (Rubin and Tanebaum 2011). Below she justified how her controversial decision gave

her the autonomy to define who she was as an individual:

I very much feel like a woman, I’m definitely a woman. But society says what a woman

looks like, and should look like, and that’s how a woman should be…I can’t agree with it,

because I can’t adhere to any of that (Rubin and Tanebaum:408).

From this we can gather that irrespective of what society says, she is secure in her identity as

a woman. Evidently, she is one of the few breast cancer survivors who refuse to abide by the

standards of femininity that are created by others. Another breast cancer survivor who decided

to channel her diminishing energy into activities that she considered more meaningful than

mourning the loss of her breasts, is an African American social worker, known only as Ella

(Grimes and Hou 2013). In a provocative yet jovial narrative called A Breast Ain’t Nothing but

a Sandwich, she recounts the mastectomy process and subsequent recovery. The inspiration for

the title of her piece was drawn from Alice Childress’s book A Hero Ain’t Nothing but a

Sandwich (Grimes and Hou 2013). It is intended to be a sardonic yet good-natured attempt to

alert people to the amount of power they bestow onto breasts. Ella’s work counters the

misguided perception that femininity resides in them (Grimes and Hou 2013). Her story reveals

that she chose the mastectomy in order to spare her parents the unabating anxiety of losing a

child from cancer. After undergoing several treatments with the hopes that the disease would

be eradicated, she concluded that the threat of remission would always exist for as long as she

had breasts (Grimes and Hou 2013). However, contrary to the feelings of loss that most

survivors express after their surgeries, Ella experienced contentment:

I had both breasts removed and reconstructed. I didn’t feel sick. I didn’t get nauseated. I

really had no regrets. Removing both my breasts wasn’t a big deal. It was a life thing. I

didn’t feel a loss like most people do when they say, “I’m losing a part of me”. I never was

a person that was into body images. A breast, physical parts, is not one of those things

that’s really a big deal for me (Grimes and Hou 2013:48)

From the extract we can ascertain her cavalier yet earnest reaction to the breast removal. We

gather that while the operation entailed physically removing her breasts, she feels intact and

whole as a person. The latter part of her words suggests that breasts are extensions rather than

the core of her. Further on in her story, she encourages women to be proactive about altering

men’s perceptions of breasts and the rest of the female body. She implies that presently, it is

considered predominantly from a sexual vantage point (Grimes and Hou 2013). However, since

candid discussions of sexuality are considered slightly taboo, it becomes difficult to initiate

41

discussion about a diseased sexual organ (Grimes and Hou 2013). As a result, she believes that

men should be taught how to assist with breast examinations (Grimes and Hou 2013). Ella

justifies her suggestion thus:

I would say teach your partner to feel for a purpose other than satisfaction. I really believe

that teaching them to learn how to do a self-breast exam would benefit them as well. For

example, any guy that I decided to date I taught them how to do breast exams, so they knew

the texture of my body. If I misfelt they knew what felt right or wrong. I think doing this

will begin to open up dialogue about talking about sex and reproductive organs in a different

way and help debunk these myths (Grimes and Hou 2013:48)

Essentially, Ella is arguing that enlisting the help of men with breast examinations can ignite

an intimacy that is mutually beneficial. Requiring men to be more involved helps their women

to find maladies they may have missed because of their familiarity with their bodies. The men

no longer have a one-dimensional view of the breast but acquire an appreciation of them as

organs that are occasionally susceptible to illness as well. Additionally, the closeness of this

exercise eases men’s discomfort and dissolves communication barriers.

Unpacking the Consequences of a “Cosmetic Crisis”

Another reason for the controversy around reconstructive procedures is the fact that it appears

to perpetuate the myth that “only one kind of body can be the true feminine form” (Schulzke

2011). According to Riba (2014:555), respected women’s activist Audre Lorde denounced this

fallacy and regarded it as a “tyranny of appearance inflicted on women”. Riba’s (2014) review

of Lorde’s work reveals that this mindset is offensive because it forces women to conceal their

ordeal through procedures and accessories. Lorde described this as a ‘cosmetic crisis’ (Riba

2014). For Lorde, being robbed of the freedom to exhibit a body that has triumphed over cancer

should one so wish, was tantamount to oppression in its highest form (Riba 2014). For her, the

pressure to appease society by covering up a body that is testament to survival against massive

odds contributed to the silence around cancer (Riva 2014; Bell 2014). Lorde believed that the

breast cancer survival experience should be celebrated. As a result, she launched a clothing and

accessories range designed specifically for one breasted women (Riba 2014). “She considered

this type of fashion, more attentive to the needs of a breast cancer survivor, appositive response

to bodily change, rather than forcing it into artificial shapes that denied reality” (Riba 2014:7).

Further, this decision was motivated by a need to challenge the one-dimensional perceptions

of beauty.

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Barbara Ehrenreich (2001) is another breast cancer survivor who is opposed to the contrived

appearance that results from attempting to mask the evidence of a mastectomy. In her work she

examines how people view these operations through multiple lens. She explains how in the

throng of voices that advocate them immediately, there is a small cluster who see no need for

further surgical ‘enhancement’ after their removal. Instead, they embrace the changes and make

concerted efforts to find creative ways of showcasing them. Ehreinreich (2001:49) summarise

these positive perceptions thus:

Not everyone goes for cosmetic deceptions…on the more avant-garde, upper-middle

class side, Mamm magazine-which features literary critic Eve Kosofsky Sedgwick as a

columnist-tends to favour the “natural” look. Here, mastectomy scars can be “sexy” and

baldness something to celebrate. The January 2001 cover story features women who

“looked upon their baldness not just as a loss, but also as an opportunity: to indulge their

playful sides…to come in contact, in new ways with their truest selves. One decorates

her scalp with temporary tattoos of peace signs, panthers, and frogs; another expresses

herself with a shocking purple wig, a third, reports that unadorned baldness makes her

feel “sensual, powerful, able to recreate myself with every new day”. But no hard feelings

towards those who choose to hide their condition under wigs or scarves; it’s just a matter,

Mamm tells us, of “different aesthetics”.

From the extract we can deduce that there are individuals who are content with the

transformation their bodies undergo as a result of cancer. Unlike the naysayers, they claim to

have discovered themselves anew afterwards. Importantly, the latter part emphasises the fact

that any type of cosmetic enhancement that a cancer survivor undertakes should be internally

motivated. Being pro-choice is a message that breast cancer activists such as Lorde constantly

fought to communicate. In 1979, her fashion ensembles for one breasted women were featured

on Ms. Magazine and were received positively (Riba 2014). The warm reception may be

attributed to the fact that like the aforementioned Mamm, Lorde’s fashion was not presented as

criticism, nor was it dictatorial (Riba 2014). Instead, it was a creative means of conscientizing

the masses about the plight of women who have to suffer through breast cancer and then live

with scrutiny, fear and rejection should they decide to not conform to society’s’ beauty

directives (Riba 2014).

Reconstructive Surgery and the patient’s support network

The literature indicates that the pressure to immediately seek out reconstructive procedures

stems from the people closest to the patients being unable to accept the unpredictability of

mortality (Rubin and Tanebaum 2011). Seemingly, breast cancer is an agonising reminder of

the fickleness of our existence (Riba 2014). Thus, family, friends and medical professionals

are uncomfortable with the prospect of discussing a patient’s probable death from it (Rubin

43

and Tanebaum 2011). Therefore, they overzealously advise cancer patients to hide any visual

reminders of this inevitable aspect of life.

This reluctance to have conversations about the implications of their breast cancer filters into

most areas of their lives. Before a woman bears the title of ‘breast cancer survivor’, she

occupies other roles. Many are professionals with thriving careers, others are wives, mothers,

sisters and so forth. However, in many ways their cancer diagnosis erases all these other aspects

of their identity. Therefore, in order to “protect” the people in their lives from confronting the

negative aspects of their diagnosis, women quickly have reconstructive surgery (Rubin and

Tanebaum, 2011; Remmenick 2006). In this way, the façade of normalcy is maintained. In their

work, Bodurtha (et al. 2014) document the communication struggles families experience when

broaching the breast cancer subject. They state that health communication practitioners have

made attempts to highlight the importance of knowing one’s familial health history, when they

design cancer campaigns. The purpose of emphasising the hereditary components of breast

cancer was to facilitate candid discussion about it (Bodurtha et al. 2014). However, this strategy

needs to be approached skilfully in order to be fully effective (Bodurtha et al. 2014). Further,

they assert that hindrances to uncomplicated conversation about breast cancer amongst families

include “loss of contact, lack of closeness, worry about upsetting relatives, cancer-related

distress, and lack of knowledge” (Bodurtha et al. 2014:2).

Grimes and Hou’s (2013) work also alludes to the difficulties that relatives experience with

reconciling with their loved one’s breast cancer diagnosis. Interestingly, their findings indicate

that it is fellow women who encounter the most challenges in that regard. The narrator in

Grimes and Hou’s (2013) study recalls how the females in her life were not necessarily cruel

but dismissive of her cancer. They deflected her attempts to talk about living with cancer, as a

defence mechanism that shielded them from thinking about their own likelihood of developing

the disease (Grimes and Hou 2013). The patient refers to this flippancy as “negative avoidance”

which she believes stems from the body shaming that society appears to have inculcated into

most women (Grimes and Hou 2013:14). She justifies her position by explaining how many

communities avoid issues pertaining to the female body by cloaking them with the “women’s

problems” banner (Grimes and Hou 2013:14). Such stereotypes taught her to utilise

euphemisms when keeping her family abreast with her cancer treatments (Grimes and Hou

2013).

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Notably, the need to maintain the illusion of normalcy extends beyond family members to

include the workplace. A participant of Rubin and Tanebaum’s (2011) study who succumbed

to pressure and underwent a reconstructive procedure had the following to say:

I just wasn’t willing to not have reconstruction because I felt like my career was gonna

be so much harder as it was having had cancer…I’m not that “out” within the [acting]

industry about cancer because they don’t really look too kindly on that…it means illness,

[a] a liability for them. They cast you and it you get sick, it’s very…the whole

entertainment industry’s so focused on youth…I’m “out” about being a lesbian certainly

more than I am about cancer. (Rubin and Tanebaum 2011:409)

From the excerpt we can gather that the patient sought reconstruction hastily because she did

not want to jeopardise her career. The industry she is a part of is fixated with portraying an

outward appearance of wellness and possibly ostentatious glamour. Therefore, disclosing her

illness would tarnish that illusion. For this particular patient, it is easier to divulge her sexual

orientation than it is her status as a sick person who may no longer able to comply with the

standards of the industry she works in. Her experience indicates that Wright’s (1997) findings

about the stigmatisation of cancer patients remain relevant a decade after they were made.

Social Interpretations of Cancer Related Pain

Pain is an inevitable aspect of breast cancer treatment, particularly at advanced stages. The

literature suggests that breast cancer patients fear the multitude of ways in which it manifests

itself:

cancer patients are particularly afraid of pain, mutilation, incapacitation and death. Side

effects associated with cancer therapy are also generally severe and believed by many to be

worse than the disease itself. Furthermore, use of research protocols in cancer therapy result

in an indifferent and impersonal attitude of the physician which results in reduced attention

given to the patients. Under these circumstances, patients may feel loss of control over their

disease, its therapy and life as a whole. (Malike et al. 2000 in Merriam and Muhamad

2013: 3595)

The excerpt above mentions several cancer effects which vary in severity. Each of them

warrants a fearful reaction because they elicit pain in the patient (and in the event of death),

their loved ones. Further, it indicates that the professionals who are meant to provide some

degree of sympathy and reassurance are not always able to because of rigid rules. Further we

can gather that when patients are faced with a thoroughly debilitating illness such as cancer

and are then confronted by cold, professional indifference, helplessness sets in. From the quote

we can surmise that when one is a breast cancer patient, one will inevitably have to contend

with crippling physical and emotional pain.

45

Disappointingly, in some cultures, the notion of pain has mixed connotations. This makes

admission and uninhibited communication impossible. A study conducted by Koffman (et al.

2013) with both male and female cancer patients revealed that social interpretations of pain can

greatly influence how they communicate about cancer and the coping strategy they adopt

thereafter. Their study identified four main meanings that are attributed to pain: Firstly, it was

considered as a challenge that needed to be surmounted. The ability to withstand it until it

subsided was considered a major personal triumph and demonstration of resilience (Koffman

et al. 2013). To an extent this belief also exists in the Zulu community. A qualitative study

conducted by Steward E. Cooper and Virginia C. Mullin indicated “that stoicism and lack of

expressiveness in the face of pain is a highly salient value among Zulus and has an impact on

levels of pain expressed to others” (2001:51). In such an environment we can infer that the

prospect of voicing pain becomes unfathomable. Thus, a cancer patient learns to suppress the

natural, human need to share the difficulties of their life as a sick person.

Secondly, the respondents stated that they interpreted their cancer induced pain as a “test of

their faith” (Koffman et al. 2013: 355). Many of them felt that they were religious, thus,

succumbing fully to pain would be an indication of a lack of faith in a higher power. Many

were Christians, therefore they compared their ability to endure pain and eventually overcome

it, to that of important figures in the Bible. “This meaning enabled [the patients] to view the

world not as an arbitrary place of uncertainty, but one where order and predictability were

present even during cancer” (Koffman et al. 2013: 355). Essentially this means that even

during periods where they experienced (health related) turmoil, they were comforted by the

knowledge that there was a higher power at work. ‘He’ could be relied on and remained

constant even during painful moments. These strong religious convictions put the cancer ordeal

into a positive perspective for the patients. However, it can be argued that they curtail authentic

communication about its difficulties as it discourages patients from fully disclosing their true

feelings. Interpreting an admission of pain as a disloyalty to a higher power is possibly denial

in its truest form. Authentic communication would need to break through this facade of

endurance in order to be effective.

The reliance on religion, particularly Christianity to endure cancer related pain is widespread.

Various breast cancer survivors have attested to the significant role their spirituality had at the

height of their suffering (Taylor 2001). A survivor who makes very vivid descriptions of how

Catholicism helped her cope, is Karen McCool (2008). Her account of the experience is infused

46

with numerous biblical references. McCool (2008:108) believed that she should persevere in

her steadfast faith, as did Christ when He was being tormented:

I know that pain is a part of my healing and as I push through it, I think of Jesus…I have

heard the Scripture readings in which Jesus is flogged. Those words never stirred much

emotion in me until I saw Mel Gibson’s “The Passion”-the whips cutting deeply into Jesus’s

flesh, blood spilling onto the ground. In my hour of discomfort, then, how can I pity myself?

My pain is the result of the medical expertise God has endowed on my doctors. Their

purpose is to heal as Jesus has healed

From the extract we can understand how the images of Christ’s distress resonated with and

altered her perspective of her own pain. From the comparison we can gather that her

appreciation of His pain prevented her from wallowing in self-pity. She perceived it as a

necessary aspect of the healing process, which was far less acute than what Jesus had to bear.

McCool (2008) draws from the Bible once more when her hair loss begins two weeks after

undergoing chemotherapy. This time, she recalls how Jesus was tortured by soldiers and then

crowned with thorns in order to ridicule him further (McCool 2008). McCool (2008) explains

that Jesus resisted all these attempts to devastate him. She asserts that his physical body may

have been bruised, but his spirit remained untainted (McCool 2008). Using this logic, she was

able to accept that while the hair loss may have altered her physical appearance, her inner

beauty and confidence were intact (McCool 2008).

Another pertinent aspect of how her faith helped her to tolerate her pain, is the mention of a

Patron Saint for Breast Cancer (McCool 2008). Historically, Saint Agatha was a virgin who

spurned the romantic efforts of the Roman Consul Quintianus (McCool 2008). By way of

punishment, Quintianus had both her breasts severed. However, her body was healed entirely

by St. Peter. Presently, St. Agatha’s day is February 5 (McCool 2008). McCool’s (2008) work

suggests that she sought refuge from her pain through the Saints and the Blessed Mother.

Essentially, McCool’s (2008) work signifies the import of religiousity and spirituality to coping

with cancer pain. Both influences are psychological tools that strengthens cancer patients when

their pain reaches intolerable levels.

In Koffman’s study, (et al. 2013) there were respondents who considered their pain as

punishment for past transgressions. For these individuals, their physical suffering was justified,

and they welcomed it for fear that any form of resistance would prevent healing from occurring

(Koffman et al. 2013). This particular group’s convictions were so strong that there were

suspicions of non-adherence to pain medication, due to their need to fully experience and

accept what they believed to be their rightful ‘sentence’ (Koffman et al. 2013). These beliefs

47

indicate that these patients have a moral compass, which is a commendable trait. However,

their principles could make them unresponsive to communication that challenges these beliefs.

From this we can infer that there are negative connotations to acknowledging cancer-related

pain. Significantly, this finding is not exclusive to Koffman’s study (et al. 2013). Peretti-Watel

(et al. 2012) also discovered that there is subtle condemnation towards cancer patients who

voice out their pain. Their work indicates that some patients who have sought pain relief advice

were referred to psychiatrists (Peretti-Watel et al. 2012). This “psychiatrization” of women’s

pain” led to them feeling self-conscious because of the insinuation that it was conjured up by

their minds, thus making it imaginary (Peretti-Watel et al. 2012:6). Even if the pain had been

fabricated by their minds, Peretti-Watel (et al. 2012:6) indicate that it would have been valid,

as “phantom pain” is a common condition amongst those who have experienced bodily trauma.

Therefore, the implication here is that the problem lies with doctors who should be

knowledgeable and willing to educate their patients about these issues.

Further, Peretti-Watel (et al. 2012:6) discovered that there was a degree of “relativization” in

women’s account of their pain, which may have been borne out of professionals’ dismissal of

it. Therefore, instead of acknowledging their pain levels openly, women did so with guilt

(Peretti-Watel (et al. 2012). In order to alleviate this feeling, they suppressed it with

comparisons of those they perceived to be in more pain than they were (Peretti-Watel et al.

2012). To this end, a patient said the following:

When I saw myself in this state I thought: there are some people who are worse off. So, then

I told myself: I have no right to complain. Even now, it is one of the principles that govern

my life. There is always someone worse off than yourself. There are those who do not have

a chance to live. (Stella) (Peretti-Watel 2012:6)

From the quote we can gather that the patient is chastising herself for admitting that she is

hurting physically. It is almost as if she is apologetic for doing so, thus, she admonishes herself

with the reminder that others experience more challenges than her.

Lastly, there were respondents who viewed their pain as an “enemy” (Koffman et al. 2013:354)

that needed to be conquered. “Patients statements categorized in this way were made up of

battlefield metaphors, focusing on the need to ‘fight’ or ‘defend’ themselves” (Koffman et al.

2013:354). This attitude towards pain can be interpreted as determination and motivation to

overcome cancer. Conversely, it can be argued that it is a coping mechanism which limits a

patient’s ability to perceive cancer accurately. Most cancer awareness initiatives focus on

conveying accurate information about what it is, the measures that can be taken to reduce the

48

likelihood of developing it and so forth. Therefore, channelling one’s efforts solely to ‘winning’

a war with an ‘enemy’ may obscure important information that could help one to cope with

their diagnosis. Further, we can deduce that in order for information to filter through to a

patient, it needs to penetrate through the barrier of this one-dimensional conception of cancer.

This section of the chapter has examined the more tragic aspects of breast cancer that are

seldom considered in breast cancer care. It demonstrated that the cancer experience has

multiple layers that bear negatively on the woman who has to endure it. To this end, it presented

the deeply ingrained social stereotypes that she must conform to, the cosmetic pressures that

she often has to succumb to, the physical toll that the illness exacts on her body and the

emotional burdens she carries on behalf of those who cannot cope with her condition. The

discussion explored how all these issues can confound the patient and complicate candid

communication about it. Overall, this part of the chapter has been a textured summary of the

uncomfortable yet unavoidable challenges to comprehensive cancer conversations.

Global Commodification of the Breast Cancer Cause

Breast cancer commodification is a massively influential force that has shaped most of the

globe’s perceptions of and communication about the disease. It is impossible to discuss healing

approaches without integrating it into the discussion because it is the promise of a cancer cure

that fuels the mania around it. However, other than the vigorous efforts of the CANSA, South

Africans appear to have minor participation in this except as oblivious consumers. They are

limited to being cogs in the global breast cancer consumption wheel. The discussion below

examines the various ways in which the commodification of breast cancer has negatively

affected the initially pure intentions of the cause and how this distortion affects cancer patients.

Origins of Pink

Worldwide the colour pink has become synonymous with the breast cancer cause. Before I

delve into the mixed reaction it manages to elicit of late, it is important to discuss its origins.

In 1984 a lady named Nancy Goodman Brinker initiated the Race for the Cure marathon in

honour of her late sister who had passed away from breast cancer (Elliott 2007). By 1990,

runners who were cancer survivors were rewarded with pink visors once they had completed

the race (Elliott 2007). By the following year, every runner received a pink ribbon as a token

of appreciation for their participation in the race (Elliott 2007). In 1992, Self magazine joined

forced with cosmetics giant Estee Lauder to endorse their issue that promoted breast cancer

49

awareness (Elliott 2007). As part of the initiative, 1.5 million ribbons were distributed and since

then, the colour pink has become the official cancer hue (Elliott 2007).

Symbolism of Pink

While the intentions behind the use of the colour pink were initially pure, it has transformed

into an uncontainable money generating scheme, which the originator could never have

envisioned. The global public has eagerly accepted the colour as the international symbol of

cancer awareness. Charlene Elliott (2007) has identified several explanations regarding the

strong resonance that the colour pink garners all over the world. Firstly, it is a non-threatening

shade that is typically associated with femininity (Elliott 2007). In sharp contrast to a more

aggressive shade such as red perhaps, pink is a softer, more soothing version. Elliott (2007:527)

states that “pink in short, is cancer inverted-life, health, play, joy... [it] can be interpreted as

activism...not an oppositional, confrontational activism, it is a consensus movement”. This

means that pink has become a unifying colour that encourages people to rally in support of the

cancer cause. However, unlike typical chaotic movements where the masses clamour to get

their message across, this one is more peaceful with its sole purpose being to bring the cancer

issue to the fore.

Criticism: Distorting cancer’s true impact

Despite the colour pink being utilised tactically during awareness initiatives, it is also subject

to criticism (Elliott 2007). Ironically, it is the cancer survivors who are the most vocal and

forthcoming with harsh condemnation (Elliott 2007). Firstly, the critics are against the use of

the colour pink because its meaning is ambiguous. It is unclear whether “the wearers are

survivors, supporters, or those currently battling cancer” (Elliott 2007:527). Further, the colour

has often obscured the magnitude and daily struggles of life as a cancer patient. According to

Barbara Ehrenreich (2001:44,) being a cancer patient sometimes entails coming to terms with

a body that is “about to be transmogrified into an evil clown-puking, trembling, swelling,

surrendering significant parts, and oozing post-surgical fluids”. Essentially, Ehrenreich (2001)

is summarising the unglamorous aspects of breast cancer that are overshadowed by the fixation

with the exuberance of the pink movement. Her vivid description highlights how cancer can

drastically alter one’s physical appearance, how one has to cope with losing a treasured body

part such as the breast and how one has to live with the physical aftermath of surgery. All these

realities are rarely communicated, particularly in the mainstream media. They are generally

disregarded by pink activists’ antics.

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Another scholar who shares the sentiments about the pink movement’s destructive influence is

Marcus Schulzke. He asserts that the obsession with pinkness contributes significantly to the

confusion between “visibility and invisibility” of breast cancer patients (Schulzke 2011:38).

Schulzke (2011) states that for decades breast cancer was misunderstood by the medical

community. Thus, “doctors treated the female body as an inferior variation on the male body

or ignored it entirely. When treated, women were frequently denied information about their

health and given little control over their treatment” (Schulzke 2011: 38). This indicates that

despite being the ones who had to endure the hardship associated with breast cancer, women’s

voices were absent from important dialogical spaces. This male imposed “communicative

marginalization” propagated the public invisibility of breast cancer (Schulzke 2011). However,

thanks mainly to the tireless efforts of activists, “breast cancer is [now] one of the most

prominent diseases, if not the most prominent, in the social consciousness” (Schulzke 2011:

38). However, the focus on the pink movement constantly threatens to eclipse the

aforementioned accomplishment.

In 2001, 2.2 million people succumbed to the allure of the pink products peddled by both

commercial giants and smaller organisations (Ehreinreich 2001). Due to its universal

acceptance as the official cancer colour, it can be applied to any object or initiative and the

public will support it gladly:

You can dress in pink-beribboned sweatshirts, denim shirts, pajamas, lingerie, aprons,

loungewear, shoelaces, and socks; accessorize with pink rhinestone brooches, angel pins,

scarves, caps, earrings and bracelets; brighten up your home with breast-cancer candles,

stained-glass pink-ribbon candleholders, coffee mugs, pendants, wind chimes, and night-

lights; pay your bills with special Breast Checks or a separate line of Checks for the Cure

(Ehrenreich 2001:46)

This colour inspired commodification detracts from the disease and fails to bring the voices of

the patients living with it to the forefront (Ehrenreich 2001; Schulzke 2011). Maya Goldenberg

(2010:157) refers to this unreserved consumption of all things pink as “pink washing”. We can

infer that when the main priority becomes profit generation by using colour to appeal to the

heart and purse strings of a cancer conscious public, the disease is side-lined and becomes

invisible. In many way, this can be considered as a form of communicative regression. It

complicates the cancer activists’ propensity to “make progressive step[s] forward, by

distancing themselves from the symbols of breast cancer marketing and making more direct

attempts to challenge the social pressures that continue to conceal the disease” (Schulzke 2011:

38).

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Some scholarly works allude to the possible psychological manipulation inherent in the pink

movement’s promotion of breast cancer. In Lucinda Rasmussen’s review of “Why I wore

Lipstick to my Mastectomomy (WIWL), a survivor’s account of her experience with the

disease, cosmetic products are portrayed as endowing women with the resilience they need to

cope. “In other words, shopping-a tangible activity is presented as a way to manage the

unknown” (Rasmussen 2015:118). Clearly, this kind of conditioning is effective as evidenced

by the following comment from a breast cancer survivor: “I decided to look good and feel

better” as suggested by the American Cancer Society. I called on my friend Millie to go

shopping with me to find comfort clothes, earrings and lipstick so that even when I felt my

worst, I still looked my best” (McCool 2008:110). From her words we can gather that there

appears to be a strong belief in the therapeutic capacity of beauty products. Further, it appears

that this mentality is endorsed by dependable organisations such as the American Cancer

Society.

To some cancer survivors, it is a travesty to utilise an issue as serious as breast cancer to

encourage the public to buy cosmetic goods labelled in pink (Ehrenreich 2001). It appears that

doing so is exploitative to people affected by cancer because it encourages conspicuous

consumption (Rasmussen 2015). This can be problematic because it is frivolous expenditure

that is not beneficial to anyone except the corporations who have vied for and secured the rights

to attach the pink ribbons to their wares (Rasmussen 2015). Rasmussen (2015) argues that these

businesses hypnotise the public into purchasing their pink products as an elaborate self-

promotion strategy. Further, she implies that these endeavours come at the expense of patients

because corporations would forfeit a substantial portion of their revenue if they were to fully

support efforts to cure the disease (Rasmussen 2015).

Another issue with the relentlessly promoted illusion of pink is that it creates an atmosphere of

passivity and acceptance. This does not allow for pertinent questions to be asked. Elliott

(2007:532) eloquently summarised it thus: “women protesting the use of pink do so because

the hue conspires in diluting the “red” of activism-the heroic action, militancy, passion, and

anger-into a rosy sentimentality…pink is red drained of power”. Essentially, activism is about

creating dialogue around important issues. It entails asking thought-provoking questions which

challenge the status quo. The ultimate goal is to empower those people affected by a particular

issue and to liaise with policy makers until there are positive changes. Contrary to this drive

for change, the softness of the pink movement teaches people to be submissive and accepting

52

of the fantasy of pink happiness (Elliott 2007). It encourages people to suppress their true

opinions and this is problematic because:

bathing our landscapes in pink is lovely, but it does not demand change: pink does not force

corporations to account for the realities of a toxic environment that causes cancer; pink does

not challenge medical procedures, that disfigure women while keeping open the possibility

of recurrence, nor does it halt the “treatments that cause substantial illness and pain; pink

does not question government policies or pharmaceutical companies that push dubious, if

not dangerous drugs; and pink does not demand fundamental changes in the health care

system (Elliott 2007: 529).

In sum, the excerpt above highlights how viewing the world through pink tinted lens obscures

peoples’ vision and prevents them from getting angry at many of the cancer related injustices.

It confirms the fact that merely draping certain causes with colour is an empty gesture that does

nothing to address many of the factors that are known to increase cancer risks. The

preoccupation with the colour does not challenge corporations to be more environmentally

conscious, it does not address existing medical gaps, nor does it acknowledge the agonizing

side effects of cancer treatments. Also, to a large extent these pink initiatives are geared at

raising awareness. However, some scholars believe that this goal is achieved at the expense of

other pressing concerns such as finding a cure (Elliott 2007; Ehrenreich 2001). Importantly,

the extract highlights the extent to which commodifying the cause has influenced how we

communicate about breast cancer. From the discussion it is clear that despite the impressive

strides that have been made towards propelling cancer into public domain, discussing it

negatively is subtly forbidden.

Breast Cancer Conversations: Profiling Cancer Champions

International Breast Cancer Activists

Earlier in the chapter, the discussion examined how poor social interpretations of breast cancer

can sometimes terrorise women into remaining silent about the disease until it is too late. In

the midst of this pressure, there is hope and it often comes in the form of outspoken activists.

An international example of a prominent activist is actress and philanthropist Angelina Jolie.

In May 2013 Jolie publically revealed that after undergoing genetic tests which indicated that

she had an 87% chance of developing breast cancer and a 50% chance of developing ovarian

cancer she decided “to undergo [a] risk-reducing mastectomy (RRM) (Evans et al. 2014:1).

This entailed removing both breasts as a preventative measure. Jolie subsequently wrote a letter

53

titled My Medical Choice9 which was shared on various media platforms. In it, she explained

that the motivation behind her decision was the fear of not being able to raise her six children

due to a probable cancer death. This fear was intensified by Jolie’s experience of witnessing

her own mother Vivian Marcheline Bertrand living with cancer and eventually dying from it.

Initially, Jolie’s announcement elicited criticism from the press and breast cancer survivors’

alike (Evans et al. 2014). Many felt that her financial privilege and celebrity status insulated

her from being fully immersed in the depths of despair that often confronts survivors with lesser

means. They felt that her account of life after a mastectomy was misguided and unrealistic. As

a result, they could not relate to her experience:

Her statement regarding “small scars” and returning to her life “in a few days” was

ridiculous…for those that have fought the battle literally and have the scars to prove it, she

came across very cold and unconnected to the cancer community-P15 (Doh and Pompper

2015:606)

I would guess that her[s] (AJ) were done by the best plastic surgeon money can buy and that

hers don’t look like these-P22 (Doh and Pompper 2015: 606)

From these excerpts we can gather that survivors felt that Jolie’s finances afforded her reprieve

from having to bear physical evidence of cancer. As a result, the cancer community felt

disconnected from her and could not fully identify her as one of them. However, the rest of the

public’s reaction was largely positive (Evans et al. 2014). For instance, while there have been

many global breast cancer awareness initiatives, their fervour is typically short-lived. Unlike

these interventions, Jolie’s announcement garnered massive results that were sustained for

weeks on end (Evans et al. 2014). Her story experienced record coverage on respectable mass

media outlets, which was further extended by magazines (Evans et al. 2014). This resulted in

75% of Americans being aware of her RRM (Evans et al. 2014). The positive impact (referred

to as the “Angelina effect’ by analysts) of her diagnosis is evidenced by “a tripling in breast

cancer referrals for genetics, family cancer centres in Victoria, New South Wales and South

Australia” (Evans et al. 2014:2).

There have been other international celebrities who shared news of their breast cancer with the

public to positive feedback. Another noteworthy mention is Australian born pop singer Kylie

Minogue, who spoke out publicly in 2005 (Ayers et al. 2014). Minogue’s disclosure received

widespread coverage albeit not to Jolie’s extent. Notably, there was a “40% increase in

9 28Hollywood actress Angelina Jolie narrated her breast cancer story for the New York Times. The full essay is available at: http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html Accessed: 09 May 2016

54

mammography appointments” afterwards (Ayers et al. 2014). While Jolie and Minogue are

arguably the most noticeable female celebrities to divulge their breast cancer diagnosis

publically, there are many others who have preceded them.

South African Breast Cancer Activists

It has been established that the majority of the celebrities who are transformed into breast

cancer champions tend to be White and from affluent nations. In countries that are on the

periphery such as South Africa, they exist but are not immediately visible. As aforementioned

mentioned, the country’s first lady Madam Tobeka Zuma, lends her voice to the cause (Wadler

et al: 2011). She is not alone as Zoleka Mandela is also a very strong voice in the breast cancer

discourse as it gains momentum. Her grandfather is the late global icon Nelson Mandela. Miss

Mandela documented her breast cancer experience in a memoir called When Hope Whispers

(Sullivan 2014). In his review of it, Richard Sullivan praised Mandela for “clear and intimate

detail about what a bilateral mastectomy means, both emotionally and physically for a woman,

and exactly how gruelling chemotherapy can be” (2014: 385). Sullivan (2014: 385) further

approves of the exceptionally candid manner in which Mandela explains how breast cancer has

threatened her fertility to the extent that she underwent “egg harvesting regimens” and the

constant fear of remission (Sullivan 2014:385). Importantly, the book is lauded as a “useful

resource” for breast cancer patients in search of material that captures the emotionally charged

daily realities of the disease (Sullivan 2014:385). In sum, breast cancer dialogue from local

opinion leaders may be scarce, however, these two champions indicate that it is steadily

increasing.

Communicative Effects of Celebrity Breast Cancer Disclosure

The aforementioned celebrity breast cancer disclosures are powerful for several reasons.

Firstly, they demonstrate how public figures can become positive role models who

simultaneously raise awareness and challenge dominant breast cancer misconceptions. In

Minogue’s case for instance, women began to acknowledge that the disease is “no respecter of

celebrity status, wealth or youth (it was something that “could happen to anyone”)” (Chapman

et al. 2005:248). Further, a celebrity’s disclosure can reinforce pre-existing information about

a disease. For instance, a respondent was quoted as saying “the most salient message out of all

this is that if it’s found early, you’re very likely to survive your disease” (Chapman et al. 2005:

248), which is information that all interventions emphasise repeatedly. Secondly, Jolie and

Mandela’s decision to share their mastectomy experiences may be controversial, however, they

55

addressed the legitimate concerns faced by patients. They both described their entire

procedures in searing detail, whilst maintaining some semblance of sensitivity. Jolie’s letter

begins with her acknowledging that “cancer is still a word that strikes fear into people’s hearts,

producing a deep sense of powerlessness” (Jolie 2013:1). Additionally, her description of the

medical aspects of the procedure conveys its magnitude, whilst emphasising the patient’s

capacity to recover quickly:

My own process began on Feb 2 with a procedure known as “nipple delay”, which rules

out the disease in the breast ducts behind the nipple and draws extra blood flow to the

area. This causes some pain and a lot of bruising, but it increases the chance of saving

the nipple. Two weeks later, I had the major surgery, where the breast tissue is removed,

and temporary fillers are put in place. The operation can take eight hours. You wake up

with drain tubes and expanders in your breast. It does feel like a scene out of a science-

fiction film. But days after surgery you can be back to a normal life. Nine weeks later,

the final surgery is completed with the reconstruction of the breasts with an implant.

There have been many advances in this procedure in the last few years, and the results

can be beautiful…. I am fortunate to have a partner, Brad Pitt, who is so loving and

supportive. So, to anyone who has a wife or girlfriend going through this, know that you

are a very important part of the transition…. (Jolie 2013:1)

The latter part of Jolie’s letter tackles breast reconstruction and highlights how critical it is for

a patient to receive support from the men in her life during the process. This indicates that

regardless of the social setting, concerns about an ‘intact’ female body exist. Jolie’s request

implies that patients undergoing this radical physical change are particularly vulnerable and

may need reassurance that their femininity has not diminished. Furthermore, from her

emphasising the improvements that have been made with breast implants, we can deduce that

she is alleviating fears about the possibility of their being sub-standard.

That being said, the most significant aspect of Jolie’s revelation is her enactment of agency.

Where feminists such as Audrey Lorde (2014) once bemoaned the loss of control of their bodies

after cancer, Jolie demonstrates it exceedingly well. She assumed responsibility for her health

by undergoing tests. Once they indicated the likelihood of her developing cancer, she equipped

herself with knowledge. Instead of waiting for a conclusive diagnosis, Jolie took preventative

measures that suited her life and those of her family. Even when the media criticised the

wisdom behind her decision, Jolie remained unapologetic because she was at ease with it (Jolie

2013). Mandela (Sullivan 2014) and Minogue (Chapman et al. 2015) also demonstrated agency

by disclosing their diagnosis and subjecting themselves to the public scrutiny that their social

positioning could have triggered. To summarise, all three cases illustrate how media

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personalities can enhance breast cancer communication, reduce body shaming stereotypes and

become catalysts for sustained behaviour changes.

Conclusion

Overall, this chapter has been a detailed examination of breast cancer and the ramifications of

living with it. It covered the issue from a conjectural position to a more applied one. At this

stage the reader should have an amplified understanding of what breast cancer is, the popular

treatments that are available and their potential socio-physical side-effects. The reader should

also have a better understanding of the acrimony that exists between the two healing

communities. The social imperceptibility of breast cancer against more prominent diseases

such as HIV/AIDS was also discussed. Some of the factors that contribute to this state of affairs

were highlighted. It was important to communicate the fact that the South African woman with

breast cancer is not on par with a patient from a First World country. In addition, the chapter

highlighted the emotional effects of having breast cancer. It documented the internal struggles

that some patients face, such as having to conceal their pain. Others are forced to accept being

ejected from their marital positions when breast cancer renders them disposable. The pressure

to undergo surgical reconstruction was also underscored. It was important to do so in order for

the reader to understand how losing a breast rapidly depreciates the value of the patient as a

woman. From there, celebrity breast cancer testimonies were integrated into the discussion

because they challenge this devaluation of sick women. It is impossible to discuss breast cancer

without referring to the pink movement. It was particularly important to examine how it was

initially implemented with the purest of intentions but has somehow mutated into an exploitive

crusade. Overall, this chapter synthesised the most pertinent findings from the works of

researchers in the breast cancer communication field.

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Chapter Three

Conceptual Framework

Throughout this dissertation, I have emphasised that the primary objective is to investigate the

influence of Zulu culture on the detection, diagnosis, reporting and eventual treatment of breast

cancer. Once more, I reiterate that this will be accomplished through an examination of selected

Zulu women’s narratives of their breast cancer experiences. In order for my assessment of their

feedback to be academically sound, I need to first lay a solid theoretical foundation. To this

end, I shall depend heavily on the Subaltern Studies field (Guha 1981, Sarkar and Chaturvedi

2000; Chakrabarty 1985). This framework suits the purposes of the study mainly because it

was popularised by scholars who like myself, are deeply committed to seeing life through the

eyes of the marginalised masses. Furthermore, it is helpful in the process of unveiling the key

actors, systems and policies that rendered them so. Very often researchers hasten to examine

the outcomes and neglect the initialising causes that set events into motion. Subaltern studies

allow us to unearth the roots and causes behind the subaltern condition. As a field it is

sympathetic towards those from the lower classes, as it assumes that they were primarily pawns

in a grandiose scheme to subvert them. Additionally, this study is premised on the assumption

that the participants are marginalised. This is reflected by the cavalier manner in which they

are inserted into social categories that ensure their marginality.

Therefore, the first portion of this chapter takes a retrospective look at how subaltern studies

originated, its main proponents and their conceptions of marginalisation. From there, the

discussion will examine how marginalisation was indoctrinated into the minds of South

Africa’s Black people. In so doing I hope to connect the metaphorical dots regarding the

present-day circumstances that they find themselves in. I must emphasise that this chapter

briefly casts aside the “breast cancer” label and instead focuses on examining the effects of

marginalisation of women solely as human beings. I will then hone in further and discuss how

this inherited state of inferiority affects the present-day South African woman. Relevant

examples relating to politics, social class issues, representation and Zulu cultural norms will be

incorporated into the discussion. I will also employ the Culture Centred Approach as it

stemmed from Subaltern Studies (Dutta 2004) and complements the overall vision of this study.

Finally, I will briefly integrate Amartya Sen’s (2003; 2009) Capabilities Approach because of

its capacity to illustrate how social structures affect people’s aptitude to enact agency. Overall,

this chapter utilises three distinct but intimately interconnected concepts as a framework for

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understanding the participant’s socio-cultural background. Further, they help us to understand

how the structures within this setting influenced their current circumstances.

Subaltern Studies: Origins

Subaltern Studies came into being during the latter part of the 1970s, thanks to South Asian

historians who had become disenchanted with a lop-sided representation of Indian history

(MacDonald 2009). The Subaltern Studies cohort captured their experiences and conveyed

their legitimacy to an audience that had deliberately been anaesthetised to them for eons.

Despite the initial scepticism, their work successfully made an indelible imprint on the global

academic sphere. At the helm of this collective was Ranajit Guha, who edited several of the

essays that attempted to redress the skewed narratives of India’s past (MacDonald 2009). Other

prominent members of this group included Sumit Sarkar, Ramchandra Guha, Dipesh

Chakrabarty and Gayatri Spivak. In 1982, their discontent culminated in the launch of “three

volumes of essays called Subaltern Studies: Writings on South Asian history and Society”

(MacDonald 2009:60). Over the years numerous contributors have added their voices to the

Subaltern Studies offerings (MacDonald 2009). That said, the success of the subaltern

movement has to an extent been marred by the departure of some of the founding members,

who have since become its critics (MacDonald 2009). The critiques they level at the cause they

once defended so vehemently, will be discussed briefly further in the chapter.

Prior to the formulation of the subaltern studies group, the Indian community had been

considered too obtuse to document their own history. According to Vinal Lal (2001:135), the

British felt that they alone could execute this task because “Indians are not historians, and they

rarely show any critical ability. Even their most useful books…exasperate with repetitions and

diffuseness” (Thompson 1926 in Lal 2001: 135). This condescending attitude coupled with

frustration at the Indian government for propagating oppressive political policies, fuelled the

subaltern movement further (Macdonald 2009). In addition to the exasperation with the

tyrannical politics of their time, the subaltern group were dismayed at the failure to

acknowledge the efforts people from India’s lower strata exerted into moulding their nation

(MacDonald 2009). At that point in time, this feat was presented as a “wholly elite

achievement” (MacDonald 2009:61). Thus, they resolved to inscribe the contributions of their

forgotten people into the revision of “history from below” (Roy 2002: 2224)

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The Subaltern According to Gramsci

The forefather of subaltern scholarship is Antonio Gramsci, an Italian intellectual whose

philosophies are referenced nearly a century after his passing (Green 2002). The Indian

scholars’ appropriation of his reflections on the working class are indicative of his vast

influence. They applied his work in order to cement their foremost arguments about the

discriminations that their people underwent. Furthermore, Gramsci’s principles continue to be

echoed by other academics whose research centres on interrogating varying social disparities

(Green 2002; Green-Marcus 2011; Jones 2006).

During his incarceration in the late 1920s, Gramsci wrote extensively on the subaltern (Green

2002). He utilised the term in the “literal sense, referring to the non-commissioned military

troops who are subordinate to the authority of lieutenants, colonels and generals” (Green

2002:1). As his immersion into this subject matter gradually evolved, so did his definition of

the term. It expanded and included “slaves, peasants, religious groups, women, different races

and the proletariat” (Green 2002:2). All these groups bear “the general attribute of

subordination” (MacDonald 2009:61). Even the vocabulary used to label them connotes their

inferior status. A modern definition of the subaltern which this study subscribes to, is provided

by Helen MacDonald (2009:61) who states that it:

literally…refers to any person or group of inferior rank and station. Importantly, it

positioned the dominant and dominated in history primarily in terms of class, caste, gender,

race, language and culture. It meant recognition of the lower peasantry and urban poor,

working people more generally, women, untouchables, and Adivasi (tribal) cultivators

The definition above highlights several categories of marginalisation. I would argue that many

of them apply to the present-day Zulu speaking woman. While significant strides have been

made to empower them in various ways, these efforts need to be intensified. For instance, it

has been 23 years since all South Africans were liberated from servitude and oppression.

Frederick Cooper (1994) recognises that women were not spared from experiencing the brunt

of the regime. Whenever they attempted to challenge the status quo by requesting equality,

they were stigmatised as “dangerous and disruptive” (Cooper 1994:1523). Disappointingly,

this inconsequentiality and erosion of the female voice from discursive spaces seems to persist.

Additionally, the nation’s abolishing of Apartheid has resulted in numerous positive changes.

These include economic empowerment for people of colour, tentative steps towards racial

equality and so forth. Nonetheless, the literature cited earlier indicates that this transformation

60

has yet to adequately permeate into areas where women need it most, such as the health sector.

With the breast cancer issue for instance, Black patients are still wading through the negative

after-effects of the regime. Previously, they were never considered as susceptible to it, which

is why twenty-four years down the line, they remain tragically oblivious to it (Wadler et al.

2011). Add to all this the incessant dismissal of their culture and healing practices and their

subaltern status is solidified (Muller and Steyn 1999, Tomaselli 2011).

Gramsci on the Marginalised

There is a widely held belief that Gramsci’s experiences with marginalisation during his

formative years evoked his interest in studying the peasant classes (Arnold 1984). From birth

until adolescence, he acquired first-hand experience with poverty in his native Sardinia, Italy

(Arnold 1984). This personal encounter with deprivation is probably responsible for his

hallmark compassion when detailing the realities of society’s poor. In his work, “Gramsci

presents the peasantry as a living force, politically as well as culturally and socially. He sees it

demanding close scrutiny and careful analysis, especially through attention to its historical

specificity and the subaltern consciousness” (Arnold 1984: 156). Prior to his writings, they had

been portrayed either as State burdens or victims (Jones 2006). Therefore, Gramsci’s

consideration of them as vital members of the public with rich histories and undiscovered

potential was controversial. Below I highlight several of his prominent principles. They

amplified my understanding of the circumstances that either create or contribute to what

MacDonald (2009) refers to as subalternity. They are also significant in that they guided my

analysis of the effects that historical events had on the marginalised masses.

Central to Gramsci’s theorising is the concept of hegemony (Nowell Smith and Hoare 1971).

His usage of the term is synonymous with explorations of how social structures such as the

State, press and the Church wielded power over the working class (Nowell Smith and Hoare

1971). This was largely through covert machinating; however, forceful means were employed

where necessary. Cox (1981:164) surmises Gramsci’s explanation of acquiring hegemony for

the maintenance of social dominance thus:

Gramsci took over from Machiavelli the image of power as a centaur: half man, half beast,

a necessary combination of consent and coercion. To the extent that the consensual aspect

of power is in the forefront, hegemony prevails. Coercion is always latent but is always

applied in marginal, deviant cases. Hegemony is enough to ensure conformity of behaviour

in most people most of the time

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From the excerpt it can be inferred that during the Gramscian era, power was reserved for a

minority that was positioned high on the class hierarchy (Jones 2006). Their unanimity on

issues pertaining to how society should function was prioritised. Conversely, the masses that

were relegated to the fringes of society were coerced into abiding by the rules made by these

minority decision makers (Jones 2006). Thus, a social equilibrium with minimal volatility was

achieved. Gramsci’s position on hegemony is pertinent to this study and its accuracy is

evidenced through South African power relations. A small cluster of the population had the

privilege of dictating how the majority should function. Importantly, hegemony was typically

maintained through violent tactics. However, this will be discussed fully further in the chapter.

Caesarism is another intriguing aspect of Gramsci’s work (Cox 1981). I interpret the term as

referring to an uprising that is initiated by a compelling leadership (Cox 1981). The techniques

that are deployed during the conflict and its aftermath are symbolic of the leaders’ true nature

(Cox 1981). As mentioned above, South Africa is still recuperating from dismantling the racial

segregation system. At its helm was a malevolent and ruthlessly ambitious minority. The

atrocities they enacted upon people indicate their callous character. That said, Gramsci

maintained that every revolution has consequences that either advance or disrupt the interests

of the parties involved. They qualify as the former when “strong rule presides over a more

orderly development of new state [and become the latter when they] stabilise…existing power”

(Cox 1981:166). Because South Africa is still in a transitional phase, we are frenzied and

disorganised. At a superficial level it would appear that power is shifting towards the previously

invisible subaltern minorities. In actuality, it is still firmly in the grasp of a minority. From

Gramsci’s perspective, this chaotic state is a regressive form of Caesarism. Further in the study,

the discussion will briefly interrogate the accuracy of this viewpoint.

The third significant feature of Gramsci’s work is his position on the purpose of intellectuals

(Gramsci 1979). He conceived of them as catalysts to subaltern consciousness (Gramsci 1979).

For the longest time the peasantry had been “studied…from a sentimentality for the past or an

antiquarian resolve to rescue them from the devouring jaws of industrial capitalism” (Arnold

1984:158). They were consummate research subjects who had outsiders scrutinising and

developing erroneous, yet enduring ideas about them. They were forced to meld into these

uncomfortable yet pervasive narratives. Consequently, they were sedated into conforming to

the passive roles that were created for them. Gramsci challenged this by maintaining that,

“class consciousness…could only come from within a social group: it could not be arbitrarily

imposed from outside” (Arnold 1984:159). Notably, he asserted that intellectuals were crucial

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to this mass awakening. It was their responsibility to “unravel the complexities and to

“translate into theoretical language the elements of historical life”, to search out signs of

subaltern initiative and incipient class identity that could be nurtured and educated into true

class consciousness and effective political action” (Arnold 1984:159). From this, I would

gather that as an intellectual who is concerned with studying a subaltern group, I am obliged to

present any knowledge that emanates from them as authentically as possible. It is my

responsibility to collaborate with these unheeded people to revise the narratives around their

fabled dependency. In this way, the power to showcase their true selves to the world, through

their stories is restored to them. Once again, this will be discussed in greater depth further in

the dissertation

Evolution of Subaltern Studies

Subaltern studies were essentially a grand attempt at inserting absent voices into the discursive

space (Bahl 1997; Roy 2002; MacDonald 2009). Importantly, unlike the Marxists, the subaltern

studies group crafted their essays in a manner that didn’t render the lower classes as a “sub-

plot in the story of struggle against capitalist exploitation” (Roy 2002:2224). Instead, their

interpretation of events allowed them to occupy a more central role. Unlike the elitist, sweeping

narratives of the modernisation era, those from subaltern studies group propelled multi-layered

ones to the fore (Roy 2002).

While each contribution was different, the group never deviated from the mandate of

recounting what they considered as their history from their perspective. Ludden (2002:14 in

MacDonald 2009) likens them to “a flock flying in formation, each author with his own

compass, but all in tune”. Unlike past disgruntlements that occur and erupt in violence when

the marginalised grow weary of being exploited, theirs was more of a quiet, yet forceful literary

rebellion. After the subaltern studies collective had achieved their original goal of retelling

India’s history, their focus shifted to “the study of colonialism through the exploration of

discursive power expressed through language and texts (MacDonald 2009:61).

By the 1990s, Subaltern Studies had morphed from a fledgling field comprising of several

misunderstood intellectuals, to a prominent “globalized academic institution” (MacDonald

2009:62). As the discourse of subalternity grew in popularity, it gained international acclaim

and transcended academic barriers by filtering into “disciplines ranging from history, political

science, anthropology, sociology, literary criticism and cultural studies” (MacDonald 2009:

62). It became so influential that even Latin American scholars attempted to adopt a similar

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line of theorising and established their own subaltern studies group in 1992 (MacDonald 2009).

However, it eventually became defunct due to internal politics (MacDonald 2009).

After reading extensively around subaltern studies, I am now a staunch supporter of it. This is

because as an academic who advocates the celebration of cultural multiplicity, I commend their

attempts to restore their people’s distinct imprint in India. For the longest time, they had been

discounted on account of their alleged backwardness. Through the subaltern group’s work, that

perception and many other inaccurate stereotypes were challenged. Further, India’s subjugated

were no longer understudies in a play about their lives. Through the revision of historical texts,

they were cast in a more prominent role. The message that was clearly conveyed here is that

they had a stake in their country and would no longer be apologetic about who they were. An

eloquent articulation of the import of unabashedly embracing one’s unique way of life comes

from David Forgacs (2000: 57):

It is organization, discipline of one’s inner self, a coming to terms with one’s own

personality; it is the attainment of a higher awareness, with the aid of which one succeeds

in understanding one’s own historical value, one’s own function in life, one’s own rights

and obligations. But none of this can come about through spontaneous evolution, through a

series of actions and reactions which are independent of one’s own will-as is the case in the

animal and vegetable kingdoms where every unit is selected and specifies its own organs

unconsciously….Above all, man is mind, i.e. he is a product of history, not nature….the fact

is that only by degrees, one stage at a time, has humanity acquired consciousness of its own

value and won for itself the right to throw off the patterns of organization imposed on

it…And this consciousness was formed not under the brutal goad of physiological necessity,

but as a result of intelligent reflection, at first by just a few people and later by a whole class,

on why certain conditions exist and how best to convert the facts of vassalage into the signals

of rebellion and social reconstruction

To summarise Forgac’s (2000) words, he believes that our way of life informs how we make

sense of the world. It shapes our personality and conscientizes us to our historical roots, rights

and responsibilities. He emphasises that us coming home to ourselves is a gradual process. As

human beings we differ from animals in that we are who we are, because of the intellectual

foundation laid by those who came before us. Our evolutionary trajectory is not determined by

the demands of nature but through our predecessors’ sophisticated reasoning, which is initially

adopted by a few fearless people before being embraced by the masses.

The Origins of the Black Dependency Complex

Colonisation is not the central focus of this dissertation. However, it is important to interrogate

it as it was a deeply divisive historical occurrence that is responsible for heart-searing

inequalities in South Africa (Comaroff 1998, Cooper 1994; Mbembe 1992). It would be unwise

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to have a discussion about marginalisation and then omit a historical event that is responsible

for this condition amongst South Africans. Additionally, it engendered the infamous Black

Dependency complex (Fanon 1986). Loosely, this refers to the universal conviction about

Black people’s reliance on the White man. This term has infiltrated mainstream scholarly

literature on the Third World and heavily influenced how Western scholars perceive the people

there. The term implies that Black people are incapable of surviving without soliciting ‘White’

intellect, innovation and expertise (Fanon 1986). At a superficial level this may seem true,

however, upon closer inspection, it is exceptionally incorrect. I will draw from Frantz Fanon

(1963; 1986) and John Comaroff’s (1998; 1999) work to support this assertion. From my

vantage point, their writing irradiates the indignities that Black people were subjected to during

their grooming into lifelong dependants. They do so with an empathy that is absent in other

scholarly work on this subject.

After examining their findings, I can assert that colonisation’s structural engineers cunningly

indoctrinated the victim mentality into Black people. Once their consciousness was subdued

through violence and terror, the socio-political structures were then fashioned to serve the

interests of the colonisers (Comaroff 1998). According to Achille Mbembe (1992: 12):

colonialism as a relation of power based on violence, was meant to cure Africans of their

supposed laziness, protecting them from need whether or not they wanted such protection.

Given the degeneracy and vice which from the colonial viewpoint characterized native life,

colonisalism found it necessary to rein in the abundant sexuality of the negro, to tame his

spirit, police his body-and ensure that the productivity of his labour increased

From this quote alone, I would argue that the black dependency complex is not a trait that is

intrinsic to this group. Rather, it is a learned powerlessness that became a survival mechanism

they adopted after colonialism was imposed at the behest of outsiders. These parties considered

the system an antidote to Blacks people’s delinquency and overt sexuality. At that stage

everything of value to Blacks was vigorously being appropriated or obliterated by it.

From Comaroff’s tracing of colonisation’s course, it appears to be a sophisticated regime that

sought to conquer vulnerable clusters of people. In South Africa’s case, the principal directive

was to obtain domination as resoundingly and seamlessly as possible. In order to quell any

hostile rebellions from their targets, the Europeans unleashed:

a broad range of disciplinary and regulatory practices, the object of which is twofold: to

recast the experienced reality, the existential world, of the colonised and to re-present back

to Europe its own modernist sense of self, thus to naturalise its world picture and the forms

of knowledge legitimated therein (Comaroff 1998: 322).

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Essentially, colonisers were thoroughly convinced of their sovereignty. Consequently, they

sought to recreate the colonies they usurped to mirror that perceived perfection. In so doing,

the colonised could then awaken to their primitive state and embrace European ingenuity and

knowledge systems. That said, a more detailed description of how this domination would be

attained is as follows:

European governance…set itself a fourfold mandate, the cumulative ‘responsibilities’ of

empire which were later to be seen and rationalised as the ‘white man’s burden’ in Africa:

(1) the ‘discovery’ of dark unknown lands, which were conceptually emptied of their

peoples and cultures so that their wilderness might be brought properly to order-i.e., fixed

and named and mapped-by an officialising white gaze; ii)the pacification of native ‘tribes’

seen to be endemically unruly and thus requiring, even desiring , Pax Britannica or another

European equivalent; iii) the facilitation of ‘commerce and adventurous industry’(Barrow,

1801-4, 1, p8), both metropolitan and local, thus to civilise the savages, to draw them into

the virtuous beneficence of empire, and simultaneously, to enrich the ‘mother country’; and

iv) rational administration –itself taken everywhere to be a condition of possibility for the

economic ‘management’(read ‘exploitation) of colonies (see Ajayi, 1969, p. 505)-which

consisted in part of the maintenance of law and order, in part of a regime of predictable

bureaucratic and fiscal practices (Comaroff 1998: 32)

The passage above illustrates the sheer self-indulgence of the colonisers’ mission. We can

discern the arrogance in assuming that by virtue of skin colour, a group of people has the

‘bothersome’ task of civilizing others. The absurdity of this is highlighted further through the

four-step program’s assumption that they discovered people and lands whose existence

possibly predates theirs. Furthermore, the assumption that people who had been self-sufficient

and content with their identities might envy a foreign Europe further emphasises colonial

conceit. Lastly, the unsolicited transference of European values that elevate economic

exploitation above all else, is indicative of a predatory need for control. This latter step in the

four-point plan was achieved by duping traditional authorities into trusting them (Comaroff

1998). Naturally, they were enticed with promises of mutually rewarding partnerships. In

actuality, the local authorities became instruments that were deployed to placate the Black

masses and modify them into affable minimum wage workers (Mbembe 1992). Those who

could not be lulled into submission via this surreptitious manipulation were violently forced to

do so. From the oppressor’s perspective “docility and productivity… [went] hand in hand. But

how brilliant power could become, how magnificent its display, depended on that increase in

productivity. So…the right to punish in this way was nonetheless generally justified in terms

of an overriding concern for profits and productivity” (Mbembe 1992:12).

By the early 1900’s, there were small groups of Black people who had been thoroughly tamed

into supporting the colonial system. These converts were:

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drawn from the tiny urban intelligentsia and petite bourgeoisie, its members were mostly

mission-educated teachers and clerks, small businessmen and traders….they were deeply

influenced by Ghandi’s nonviolent philosophy, by the moderate policies of Booker T.

Washington, and by their white mission friends and liberals in parliament, who counselled

restraint, patience and moderation, and assimilationist, demanding full civic participation in

the great British empire, rather than confrontation and radical change. They were also solidly

male (McClintock 1991:112)

Essentially, this exclusive cluster of Black people were hand- reared by colonisers. I would

compare their grooming to that of some scientist training rodents in a lab, to respond favourably

to alien phenomena. The conditions are monitored strictly, they are fed particular food at

designated times and if they exhibit the desired behaviour, the experiment is considered

successful. Nevertheless, these hand-picked rodents’ behaviour becomes atypical to their

species. Similarly, the excerpt implies that once the country was controlled through the

implementation of incontestable policies, colonisers then chose a small group of Black people

to prime to perfection. This was a methodical process that was executed progressively. Their

education met colonial standards and potential flares of insurgence were managed with

doctrines that encouraged submissiveness (McClintock 1991). Also, this privileged faction was

made more elite through the exclusion of females. With this background, it can then be argued

that every trace of Blackness (other than colour) in these people had been eradicated. In the

acclaimed Wretched of the Earth, Fanon (1963:7) summarises this process even more

eloquently:

the European elite undertook to manufacture a native elite. They picked out promising

adolescents; they branded them, as with a red-hot iron, with the principles of Western

culture; they stuffed their mouths full with high sounding phrases, grand glutinous words

that stuck to the teeth…. they were sent home, whitewashed. These walking lies had nothing

left to say to their brothers; they only echoed…

Thus, they were the ultimate manifestation of successful colonial experimentation. According

to Comaroff (1998), the gravity of this forceful yielding of self is glibly minimised in scholarly

works. It is considered minor collateral damage on the path to a supposedly infinitely rewarding

modernity. He then highlights how colonisation is portrayed as a flawless transition to a sought-

after development. In reality, it was marred by “excesses, its tendencies toward brute

domination and its descents into violence, its scandals and corruptions, its inefficiencies, and

incoherencies, its deployment for the enrichment of some at the expense, even destitution, of

others” (Comaroff 1998: 326). Thus, we can deduce that the infliction of colonisation onto

Black people was in fact riddled with challenges.

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As the toll of being flogged into submission intensified, Blacks resigned themselves to the new

processes. They then became dependent on “a mix of underpaid migrant wage labour in the

urban industrial sector (done mainly by men) and underproductive rural agriculture (done

largely by women (Comaroff 1998: 326). From this we can gather how the core of colonisation

was weakening through division. Prior to their descent on South African soil, people had been

largely communal. In Zulu societies for instance, there may have been roles and tasks that were

assigned on the basis of gender (Laband 208; Hammond-Tooke 2008). However, these were

for the long-term continuance of family units (Hammond-Tooke 2008). There was never a need

for extended periods away from home in order to haemorrhage out a pittance for survival.

Further, agricultural activities were undertaken purely for communal subsistence (Laband

2008). With the advent of colonisation, they now had to mass produce crops, irrespective of

the impact this would have on the land and its people (Laband 2008). The objective was no

longer on steady societal advancement. It was now on rapid growth that could be measured

solely through economic terms.

Fanon: effects of the dependency complex

It is on this historical background that Franz Fanon bases his positing on how a terrorised Black

psyche functions. He argues that centuries of exposure to atrocities are responsible for the

Black dependency complex (Fanon 1986). Further, he states that while racism and the

subordination of others through brutality confounds the human spirit, oppressors felt compelled

to do so in order to ensure their survival (Fanon 1963). Basically, they numbed the murmurings

of conscience by justifying their deeds as necessary evils. Similarly, Blacks learned to ignore

the crimes committed against them in order to survive.

Fanon states that in a pre-democratic South Africa, even the most economically lowly White

person could inspire fear in a Black person on account of their skin colour (Fanon 1986). From

his vantage point, South Africa was primarily: “a boiler into which thirteen million blacks are

clubbed and penned in by two and a half million whites” (Fanon 1986: 87). Through these

numbers, we can gauge how powerful this programming of Black people was. It simultaneously

curbed a rebellion against the authority of massively outnumbered Whites, whilst fostering a

dependency on it. I would argue that this newly acquired enslavement to White wisdom

produced timidity amongst Blacks when they evaluated themselves against White people. It

taught them to cower at the mere sight of them. Fanon (1986:92) corroborates this observation

thus: “In South Africa there are two million whites against almost thirteen million native

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people, and it has never occurred to a single black to consider himself superior to a white

minority”. That is because if you have been programmed to be subservient, you relinquish

every vivacious and indomitable part of yourself. You then become dependent on the powers

that suppress these vital qualities in you, for validation. Taylor C. (in Dekker 2012: 304)

corroborates this thus:

our identity is partly shaped by recognition or its absence, often by the misrecognition of

others, and so a person or a group of people can suffer real damage, real distortion, if the

people or the society around them mirror back to them a confining or demeaning or

contemptible picture of themselves

Essentially, our sense of self is fragile and insecure. It fluctuates according to the world’s

response to us. Regardless of how assured we might be about specific aspects of our identity,

those certainties disintegrate if the people around us reject them. If for instance we are proud

of our cultural identity, but an authoritative figure belittles it as being backward, we are shamed

into seeing ourselves as they do.

Gradually, this dehumanization led to a desperation for even the most meagre

acknowledgement. If the cost of being recognised as human entailed moulding oneself into a

White person, it was a price worth paying (Fanon 1986). After surrendering their identity and

worth in exchange for some semblance of recognition, Blacks appear to have conformed to the

leader-follower roles that prevail to this day. Fanon verifies this observation thus: “It becomes

obvious that the white man acts in obedience to an authority complex, a leadership complex….

(Fanon 1986:99)”. Conversely, a black person “obeys a dependency complex [and] everyone

is satisfied” (Fanon 1986:99). In sum, the notion of Black dependency was devised through the

collusions of a European minority that was determined to reign supreme over them. Regardless

of what Western-inspired literature contends, dependency was never inherent in Black people.

It is merely an inherited condition.

Contemporary Second-Class Citizens

We have concisely examined what is probably the most colossal historical force responsible

for subordinating Blacks. The discussion now highlights several of its residual effects. Doing

so will strengthen the dissertation as it gives the reader a balanced indication of the realities

facing a Black South African after centuries of subjugation. The overall objective is to

demonstrate how colonisation deprived them of substantially more than land.

Black South Africans have always been the largest population in the country (Steyn 1998;

Dekker 2012). However, they remain the most impoverished and visibly invisible (Steyn 1998;

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2012). With the advent of democracy there have been efforts to scrape them from the bottom

of the social barrel, to the top. However, that process is decelerated by numerous difficulties.

The most powerful is the inferiority complex that colonisers saddled them with (Fanon 1963).

The discussion above problematized how their oppression is experienced more profoundly in

the area that matters most, which is the mind. As a result, I would argue that the reformation

of certain policies to include them is necessary yet inadequate on its own. This is because when

you have been systematically trained to accept that you do not matter, the realisation that you

do may not register instantly. You may be left floundering helplessly because suddenly being

a person of value is so unfamiliar.

This observation is not made facetiously. It is reinforced by scholarly work that confirms that

the astounding irrelevance of Black South Africans was once the norm. Their position as the

lowliest group on the social rung often went uncontested. In fact, they were so synonymous

with abject poverty, that they became the benchmark other groups tried not to reach if they

were to retain their self-respect (Dekker 2012). Lydia Carol Dekker’s (2012) study on the social

perception of White car guards is evidence of this. Dekker’s work reveals how they are shunned

socially because they have sunk to a level of poverty that is foreign to White people. She

substantiates this thus:

Despite the many political and social changes that have taken place since 1994, the

perception nationally and internationally is that all white people in South Africa are still

‘privileged’ in relation to other races. This view has been ingrained due to the fact that white

people, especially Afrikaners, enjoyed a large measure of job security during apartheid that

allowed them to earn a wage enabling them to live a life ‘suitable’ for white people….since

the end of apartheid, many white people from the lower socioeconomic strata were forced

to seek low paying employment as they lacked the social orientation, education and skills

that became essential in the new south Africa (Dekker 2012:304)

From the excerpt we gather that Black people were more underprivileged than their White

counterparts. Prior to 1994, there was indeed a distinction between acceptable standards of

living for White people and those of colour. However, with the implementation of democracy,

the latter group were befuddled at the prospect of an existence that was previously reserved for

Blacks. Additionally, the excerpt proves that living conditions that were mandatory for Blacks

for centuries, have become intolerable to their racial superiors within a few years.

Additionally, Mary Louise Fellows and Sherene Razack’s (1998) work indicates that

emphasising separateness from Black people is an inherited practice that stems from a need to

reinforce White supremacy. It is a blatant attempt to mark the group, thus defiling them

(Fellows and Razack 1998). To be White requires no justification (Fellows and Razack 1998).

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It is an accepted condition that connotes prestige and privilege. Yet, the subtext of Blackness

is publicly sanctioned subservience. A more sophisticated substantiation of this logic is as

follows: “White people need not and do not define themselves as members of a race;

heterosexual people do not define themselves as having a sexual orientation. Thus identity

comes to bear an intrinsic relationship to subordination. Identity boxes contain those excluded

from the dominant group. Conversely, to be unmarked or unnamed is to belong to the dominant

group” (Fellows and Razack 1998: 341). Overall, the shift from living in a state of inescapable

darkness, where you have no rights, education or skills to lead a fulfilling life was once

automatic for Blacks. However, nowadays the true intolerability of this is now being exposed.

Aversions to conversations and Black consciousness

As aforementioned, the legacy of colonisation lives on in modern-day South Africa. Its

remnants are exhibited through the hostility Black people encounter each time they assert

themselves by demanding equality in any form. The reluctance of those with the power to

initiate such changes manifests itself when a blind eye and deaf ear are turned even to requests

to engage in dialogue. This is done whilst implementing measures to silence them through

intimidation. During colonial times, this strategy was employed with the hopes that eventually

“sheer physical fatigue will stupefy them. Starved and ill, fear will finish the job…if he shows

fight, the soldiers fire and he’s a dead man; if he gives in, he degrades himself and is no longer

a man at all; shame and fear will split up his character and make his inmost self-fall to pieces”

(Fanon 1963:15). This course of action is effective for a time, yet typically it fails. Ultimately

it erupts in an insurgence from the oppressed. From what I could deduce from the literature,

this is because psychological brainwashing is powerful in that it weakens people considerably.

Yet, it does not completely annihilate their spirit. It saps without fully vanquishing it.

During the Apartheid era for instance, handfuls of Black people who were frustrated with the

poor treatment they and their forefathers were subjected to, formed organisations that sought

to denounce racism. They were not seeking retribution or domination of their oppressors. Their

efforts were “aimed principally at galvanizing the physically and mentally colonized

people…to rise up and retrieve their self-esteem, dignity and freedom and thus resume their

rightful place as respectable members of the World community” (Ranuga 1960: 182).

Essentially, they had finally awoken to the lie that they were defective and mediocre. They

were yearning to lay claim on territory that should have been home but was not due to centuries

of persecution. Further, they sought autonomy to determine the course of their lives (Ranuga

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1960). Nevertheless, they were intelligent enough to recognize that the battle had to be won in

the mind first and that this would be a prolonged process.

One of the most prominent social movements that sought to imbue this positive sense of self

within Black people was Steve Biko’s Black Consciousness (Biko 1987). They undertook this

task fervently because they recognised the urgency in curbing the continuation of individuals

who would be eternally enslaved and disenfranchised (Ranuga 1960). Predictably they were

ignored at first. However, when it became evident that they would not relent until they were

heard, White people offered to engage with them. However, this eventually proved futile

because they were not authentically intent on empathising with them. The readiness to talk

originated from a place of self-preservation and trepidation that Black peoples’ rage at being

tyrannised for centuries would be unleashed onto them (Ranuga 1960). Thus, it was best to

curb any potential riotous action by feigning concern.

This seemingly harsh evaluation of history comes from my sharing Biko’s sentiments about

racism being the hurdle that oppressors refused to overcome (Biko 1987). If this was not the

case, then “why do they not address themselves to the white world? Why do they insist on

talking to blacks?” (Biko 1987:79). Phrased differently, if the oppressor’s claims at being

committed to fostering equality had been genuine, they would have been evidenced through

structural modifications because those who control the economy, the media and politics have

the lion’s share of power. Seeing as White people controlled most of these institutions, some

concessions could have been made in order to re-write history’s injustices. However, instead

of taking ownership of being beneficiaries of a system that thrived on the exploitation of others,

the whispered conversations became combative. It became an ‘us’ against ‘them’ type of

sparring, which was disappointing as that condensed the movement to Black against White

(Ranuga 1960). However, “the philosophy of black consciousness must be viewed not from

the perspective of skin pigmentation but as “an attitude of mind, a way of life…the term black

therefore was not intended to describe skin colour per se, but to delineate a social category of

people who occupied a subordinate position in a capitalist and racist system” (Ranuga 1960:

1987). Basically, Black skin was not a prerequisite for supporting the consciousness crusade.

One needed a willingness to unreservedly appreciate the challenges confronting this group of

people and a commitment to constructive change. Thus, it can be surmised that interpreting

Black people’s pain in a dismissive manner was an avoidance of accountability and an

encumbrance to positive social change.

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Subordinating the South African Female

Thus far the conversation has been geared towards accentuating various forms of repression

that the Third World, particularly Black South Africans were subjected to. Further, it

endeavoured to dispel the Black Dependency lore that is imposed on them by Western scholars.

The overall intent, was to justify my claim that they were a subaltern race group who were

never innately that way. Their subjugation was contrived and conserved through historical

machinations and skilful psychological conditioning. The discussion now shifts to an

exploration of how social structures specifically marginalised females at various points in

South African history. The goal is to illustrate the scope of their suppression. It is my

submission that local women are incontestably and wholly subaltern. Based on the literature, I

am of the view that being subaltern constitutes all that acts to silence, limit, oppose and

diminish not only the essence of who people are, but who they could be (MacDonald 2009).

South African women have been subjected to all of that. Patriarchal beliefs, tumultuous

postcolonial and political history are titanic determinants of their subaltern state. I will utilise

references that are extracted from each of these features to support my assertion.

The politics of Masculinity

Politics is arguably the pillar of every society because it defines the parameters within which

it can function. Therefore, the total exclusion of females from the political arena translates into

their inability to contribute to delineating those boundaries. Morell’s (et al. 2012) study titled:

Hegemonic Masculinity in South Africa: Culture, Power and Gender Politics is a provocative

evaluation of how the male figures at the helm of South African politics effectively consigned

women into obscurity. In order to highlight the effects of this relegation, Morell (et al. 2012)

traces the course of South African politics and the masculine characteristics of three men who

have occupied the presidential seat and another who is aggressively vying for it. I employ his

work as a case study because it is a magisterial summary of how South Africa reverence of the

male personality disadvantaged women.

First was Nelson Mandela, who was succeeded by Thabo Mbeki, who was replaced by Jacob

Zuma. Presently, the latter’s reign is actively being dismantled by his former protégé, Julius

Malema. Morell (et al. 2012) asserts that it is this “multiplicity of masculinities that exist to

oppress women”. Essentially, just by virtue of being male, each leader’s presence in office

diminished South African women. Of the three men, Nelson Mandela’s brand of masculinity

was a unique kind that sought to be progressive yet was unfathomable to the average local man.

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Having been born into the abaThembu royal clan and then being afforded a superior education,

Mandela’s approach to gender issues was drastically innovative (Morell et al. 2012). For

instance, he was known to encourage men to assist with domestic tasks and to be more active

as fathers (Morell et al. 2012). While this may have endeared him to women, it challenged the

firmly cemented traditional gender roles, thus emphasising his elite status. However, the

monumental victory he had attained for South Africans protected him from being openly

criticized, for what could have been construed as a forced attempt to Westernize local men

(Morell et al. 2012). Despite the noble intent, Mandela may have inadvertently reinforced their

resolve to protect themselves from the apparent threat of equality with women. I believe this

was the case due to statistics indicating the increasing number of crimes against women and

the almost motionless pace at which their voices were integrated into politics. Overall, while

his gallant variety of masculinity may have stemmed from goodwill, it may have intensified

the communicative alienation of women.

Mbeki was then instated as president and he attempted to advance his predecessor’s gender

equality ideology. In theory, he was qualified to do so successfully, yet he lacked Mandela’s

natural charisma. As a result, people distanced themselves from him. He was described as “

aloof, dictatorial and bullying and together with a resistance to the program of gender equality

itself, eroded support not only for him as president, but also for the new masculinity that

Mandela has attempted to develop” (Morell et al. 2012: 7). From this, I would infer that the

consideration of women’s voices and needs became an even lesser priority. This is because

when one is disenchanted with their leader’s ideals, one may be inclined to resist them more

ferociously than if they were proposed by someone they respected. Further, the notion of

equality with women had been unpopular even when it was presented by a globally beloved

leader. Thus, the likelihood of people being receptive to it at the request of a less influential

one was slim.

Thus far, it is difficult to fully assess whether Zuma’s distinctive masculinity unravelled

Mandela’s efforts at redressing gender inequalities or intensified them. That said, he is as

revered as he is resented by Black men and women alike. The former is due to the fact that he

epitomizes upward mobility. His story is one that previously disadvantaged South Africans

relate to because he originates from a highly impoverished background, lacks basic education,

and survived the viciousness of Apartheid (Hunter 2011 in Morell et al: 2012: 8). Despite this,

he emerged as the country’s president. Many women can attest to experiencing similar social

injustices. Thus, for them, Zuma is living proof that such challenges can be surpassed. The

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setbacks that he has overcome are recognized as ‘theirs’ because they are inevitable

experiences for the vast majority of the Black population (Hunter 2011 in Morell et al: 2012:

8).

However, Zuma is controversial because he participates in practices that some consider

misogynistic. For instance, he supports polygamy which he vehemently defends as being a

conventional Zulu cultural practice (Koktvedgaard Zeitzen 2010)10. Being a polygamist in

present day South Africa is a controversial lifestyle. Its critics consider it to be a practice that

dishonours women. It has been argued that it facilitates male promiscuity whilst endangering

women’s health (Lerclec-Madlala 1999). Leclerc-Madlala (1999: 243) emphatically states that

“the consequences of such traditions in the midst of an as-yet incurable disease that is spread

primarily through heterosexual activity in conjunction with men’s reluctance to use the condom

(condom use often being viewed as something ‘untraditional’ and therefore to be avoided), are

nothing less than lethal”.

Combine this with a highly publicised rape charge, laid by an HIV positive female and Zuma’s

image as an exploiter of women is solidified (Evans and Wolmarans 2006)11. I would also

conclude that his acquittal was a resounding gagging of women everywhere. I base my position

on the fact that at the time, Zuma was a political figure of considerable stature. The gravity of

the rape charge, accompanied by the public outrage could have obliterated his political career.

However, it did not. This could have potentially sent out the message that the eloquence of one

man’s nonchalant voice, can drown out the incensed voices of millions of women. Thus, it is

fair to say that overall, Zuma’s brand of masculinity is “heterosexist, patriarchal, implicitly

violent and glorified ideas of male sexual entitlement… and conspicuous sexual success with

women” (Morell et al. 2012: 7).

Zuma’s position of power, is constantly being challenged by Julius Malema, a former leader

of a faction of the ruling party known as the ANC Youth League12. Despite once being his ally,

10Further details on Zuma and his stance on polygamy appeared in an article titled: “The many wives of Jacob Zuma: why the South African president’s polygamy is about more than womanizing”. It was published on March 11 2010. Website: http://foreignpolicy.com/2010/03/11/the-many-wives-of-jacob-zuma/ Accessed: 11 November 2016 11 The details of the rape trial were gleaned from an article titled “Timeline of the Jacob Zuma rape Trial”. It appeared in the Mail &Guardian on 21 March 2006. Website: https://mg.co.za/article/2006-03-21-timeline-of-the-jacob-zuma-rape-trial Accessed: 11 November 2016 12 The details of Malema’s tenure as the ANC Youth League President were extracted from the Mail& Guardian. The article was published on 07 April 2008 Website: https://mg.co.za/article/2008-04-07-malema-elected-as-new-ancyl-leader Date Accessed 15 November 2017

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Malema is now his most abrasive critic. His type of masculinity is the kind that the younger

generation of men and women gravitate towards, because of its volatility as it pursues goals.

Morell (et al. 2012: 8) state that it “conspicuously celebrates assertions of power and wealth

with acquisition predicated on entitlement, use of violence and brute strength…” It is premature

to attempt a comprehensive evaluation of the full extent of Malema’s masculinity in relation to

female marginalization. However, thus far, it seems to resonate with a select cluster of younger

women who are defiant and outspoken about issues concerning them. Overall, despite the

differences inherent in these variations of masculinities, their key similarity is the control they

exert over women. This is evidenced by the fact that the men remain in the leadership roles

thus determining the issues to be prioritised. Women may occasionally speak on them, as we

have seen with Malema’s party, however, he alone has the decision-making power. Therefore,

we cannot rely on his female subordinates to be representatives of the average South African

woman. In sum, it seems that this gender-based domination is a cumbersome issue which needs

to be overcome if women hope to experience discursive equality.

Shattering the Frail Female Fallacy

The overwhelming male influence in the political sphere is a compelling illustration of how the

female voice is rendered inaudible. Another equally damaging act of domination towards South

African women is the failure of Western intellectuals to acknowledge feminine diversity. Over

the decades, they have constructed an imaginary Third World female subject who single-

handedly embodies the challenges faced by millions of disadvantaged women (Mohanty 1988).

Chandra Talpade Mohanty (1988: 51) questions this conception “of the third world woman as

a singular monolithic subject” and considers it a figment of a misguided Western imagination.

The effects of this, is the erroneous belief in the homogeneity of underprivileged women and

their challenges. Their unique identities are expunged, and the magnitude of their problems

cannot be assessed accurately. They are either greatly exaggerated or grossly underestimated.

According to Mohanty (1988:56) the stereotypical “third world” woman as conceived by the

Western academic “leads an essentially truncated life based on her feminine gender (read:

sexually constrained) and her being “third world” (read: ignorant, poor, uneducated, tradition-

bound, domestic, family-oriented, victimized etc.” Of course, this prejudiced impression of the

average third world female is spectacularly incorrect. While they are confronted by oppression

in various forms, that does not define their identities nor their capacity to enact agency and

alter their circumstances. South Africa, like everywhere else on the globe, has an eclectic

grouping of females with unique attributes. In the same way that the West has educated,

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independent and empowered women, so too does South Africa. Our history is resplendent with

examples of ordinary women who were visionaries that planted seeds of independence that are

being harvested by young girls today. For instance:

On August 9 1956 a throng of women congregated and marched to the Union Buildings as part

of a peaceful protest against being forced to carry internal passports (Cooper 1994). This was

a strictly enforced requirement of the Apartheid government, because it controlled the influx

of people of colour into White areas (Cooper 1994). Further, this practice maintained the

division of people along racial lines. Thus, they created the Women’s Charter in which they

demanded “land re-distribution, for worker benefits and union rights, housing and food

subsidies, the abolition of child labor, universal education, the right to vote and equal rights

with men in property, marriage and child custody” (Mclintock 1991:115). Accordingly, an

estimated 20 000 strong female crowd embarked on a mass demonstration (Cooper 1994).

Walker (1991:195) recollects the spectacle thus:

many of the African women wore traditional dress, others wore the congress colours, green,

black and gold; Indian women were clothed in white saris. Many women had babies on their

backs and some brought their white employer’s children along with them. Throughout the

demonstration the huge crowd displayed a discipline and dignity that was deeply impressive

From the excerpt, we can gather that this display of solidarity was of an epic proportion.

Further, it exemplified the unity of women from diverse cultural and racial backgrounds. This

was uncommon during what was arguably the height of a regime that promoted segregation.

Their solidarity was rewarded far beyond what they might have envisioned, because it

generated mammoth-sized political changes. Until that point women had laboured feverishly

to be recognized politically, to no avail. After that event however, the ruling party’s OR Tambo:

insisted that the women’s league was no longer a mere appendage to the ANC, and he broke

taboo ground by deploring the “outmoded customs” that hobble[d] women, and broached

the vexed issue of domestic labor, urging fellow Congressmen to relieve women “in their

many family and household burdens so that women may be given an opportunity of being

politically active (McClintock 1991:115)

Further, this event is immortalized in the country’s history and celebrated annually as National

Women’s Day. This case is a strong contradiction to this Western notion of a subdued and

downtrodden South African woman. In fact, I would argue that it is a grand portrayal of an

assertive female body that is courageous enough to peacefully, yet emphatically retaliate

against repressive social structures. Thus, we can surmise that local women’s subaltern state is

not inborn or stemming from a lack of intellect perhaps. It is merely a consequence of social

forces that continually devise plans and policies that render them so. Despite such glaring

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evidence, the world’s most influential scholars are determined to be wilfully ignorant by

perpetuating the eternally hapless third world female myth.

Cultural Forces

To a degree, the South African Black woman’s subaltern position is created and sustained by

certain cultural stipulations. Each community has cultural dictates and time-honoured values it

abides by. I would argue that these tend to be stringently enforced amongst the traditionalist

people of colour. Their conservative worldview has engendered powerful yet partial principles

such as ‘Ubuntu’ which can be understood as being a:

philosophy on how human beings are intertwined in a world of ethical relations from the

moment they are born. Fundamentally, this inscription is part of our finitude. We are born

into a language, a kinship group, a tribe, a nation and a family. We come into a world

obligated to others, and those others are obligated to us. We are mutually obligated to

support each other in our respective paths to becoming unique and singular persons (Cornell

and van Marle 2015:2)

Essentially, it is a moral philosophy about our accountability to our fellow man (Samkange and

Samkange 1980). It suggests that our existence and success in life is dependent on our conduct

towards others. Therefore, we must strive to be benevolent because we are as bound to them,

as they are to us. There are multiple interpretations of the term and Mabogo P. More (2005:

156 in Cornell and van Marle 2015) shares one of them:

In one sense, Ubuntu is a philosophical concept forming the basis of relationships, especially

ethical behavior. In another sense, it is a traditional politico-ideological concept referring to

sociopolitical action. As a moral or ethical concept, it is a point of view according to which

moral practices are founded exclusively on consideration and enhancement of human well-

being; a preoccupation with the ‘human’. It enjoins that what is morally good is that what

brings dignity, respect, contentment and prosperity to others, self, and the community at

large. Ubuntu is a demand for a respect for persons no matter what their circumstances may

be…In its politico-ideological sense, it is a principle for all forms of social harmony by

encouraging the practice of sharing in all forms of communal existence

From the excerpt, we establish that an authentic application of Ubuntu to our lives necessitates

self-sacrifice and a deep-seated appreciation for human life (Samkange and Samkange 1980).

It is a great leveller since it assigns equal value to every individual irrespective of their

standing on the social hierarchy. While it is a noble philosophy to adopt, I do believe that it

places additional pressure on women to relinquish even more of themselves.

In many Black communities, the woman is the nurturer and often the sole financial provider.

To illustrate this, pre- democracy, an estimated 1.9 million households were headed exclusively

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by women (Steyn 1998). This was no minor feat due to challenges such as the inability to

secure “employment because of their lack of language and technical skills, and by the collapse

of the extended family or neighbourhood networks that had previously assisted women with

domestic tasks” (Steyn 1998:42). With Ubuntu being deeply ingrained in them, they had to

endure these hardships in order to protect their families’ interests.

This culturally imposed selflessness has prevailed past the Apartheid era and permeates into

every area of a woman’s life. Society remains expectant that she will abide by it to her own

detriment at times. For instance, breast cancer literature reveals that many patients suffer

silently after being diagnosed (Remmenick 2006). They do so in order to protect their families

from the grim reality of the disease. The implicit message here is that an injury to one should

not be borne by all.

Theoretically, Ubuntu is understood by the majority of Black South African communities.

However, the burden of upholding it is shouldered more strongly by the women. This is

evidenced through trends such as their bodies being regarded as polluted when they fall ill

(Lerclec-Madlala 2001). If indeed Ubuntu is about reverence for human life, a woman’s life

should not depreciate in value when circumstances beyond her control such as illness occur. It

contravenes every fundamental tenet of the concept. However, there is always convenient

justification for such hypocrisies. Disappointingly, these are unquestioned because “the

majority of South African women of all population groups have resisted being labelled as

feminists” (Steyn 1998: 42). Bearing this tag is unbecoming to a woman as it implies that she

is defiant of social propriety codes. Overall, I believe this mandatory compliance to an unjust

social decree is ample evidence of how culture (perhaps inadvertently) preserves the female

subaltern state.

Ubuntu is a notable example of a commendable cultural practice that was intended to

conscientize people to the existence of others and the value of honouring them. However, its

significance has been distorted and it has become a tool brandished at women to coerce them

into silence.

There are countless occasions where respectable aspects of culture are modified to keep women

marginalized. A significant one that was denounced by feminists from the post-apartheid era

was the customary move by a married woman into her in-law’s home (Pillay 1994). Once her

dowry was paid, she was recognised as an official member of her new family. An optimistic

view of this custom is that it legitimised her as a valuable addition to her husband’s family. I

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would also argue that it could have been an act to endow dignity and respect to her as a wife.

In this way, she was elevated from possibly being regarded as a man’s concubine, to being

acknowledged as a high calibre woman. Gradually, the purity of this practice was tarnished,

and it became a strategy to dispossess women of all that was rightfully theirs (Pillay 1994).

The customary law stipulated that once her bride-price was paid and she was integrated into

her marital family, she automatically lost any claim to her property. Further, she could no

longer have ownership of her children as they now belonged to her in-laws (Pillay 1994). In

such instances, the woman was given a daunting choice. She could either retain her treasures

and confront a turbulent post-Apartheid society alone or forego them all in exchange for marital

security. By choosing the latter, she would be relinquishing both material and emotional assets.

From my vantage point, being forced to adhere to these seemingly oppressive customs is the

height of subordination.

Elitist Representation

When opportunities for Black women’s voices to be heard presented themselves, this was done

by elite members of their race group. Many scholars have questioned the wisdom of someone

who is far removed from the daily complexities of your life, speaking on your behalf (Ramphele

1990). You may share the same skin colour, however if that is the extent of their similarity to

you, there should be reservations about how authentically they understand your circumstances.

Respected politician and women’s rights activist Mamphela Ramphele has in the past alluded

to how affluence can distort the accuracy with which underprivileged women’s issues are

understood (Ramphele 1990).

If we contemplate the enormity of the detachment and imperviousness these representatives

had to regular women’s problems, we can gather that Ramphele’s observations are correct.

Generally, the feminists who chose to represent women had several shortcomings to their

approach. Perhaps the most damaging one is their modelling it according to Western ideals

(Basu 1995). Essentially, they utilised Western theories as the lens for identifying local

women’s challenges prior to publicising them (Basu 1995). The result was the incorrect

assumption of sameness with Western women (Basu 1995). Further, many of these ‘advocates’

of female issues were formally educated; thus, they had a degree of intellectual conceit towards

their largely illiterate counterparts (Hassim 2005). Simply, the average woman was silenced

due to her dependence on other women to identify what her problems were, their severity and

whether they warranted public discussion.

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Further, despite feminists having a wider platform from which to contest certain inequalities,

the politics at the time placed limitations on the degree to which they could be addressed. For

instance, Parliament, which is the uppermost arena for articulating issues and redressing them,

was dominated by men for a long period (Meintjies 1996). When women eventually wrestled

their way inside, it took approximately 50 years for their participation to be meaningful

(Meintjies 1996). Disappointingly, “this progressive inclusion belied the terms of participation

and inclusion, which stressed women’s maternal roles (epitomized as ‘mothers of the nation’)”

(Hassim 2005:178). Being given this title connotes women’s capacity to nurture. In this

instance it was another ruse employed to silence them and advance male agendas. When we

take a retrospective view of the constraints that forced women into silence and submission, we

can appreciate the Herculean effort it took to for them to insinuate themselves into discursive

arenas such as Parliament. However, the fact that a select few represented a majority that they

were fundamentally disconnected to, contributed to the marginalisation that they were

protesting against. Unfortunately, this pattern of communicative exclusion due to class, race

and gender dynamics prevails. It is evidenced in many ways such as the absence of South

African women in global cancer texts.

Competing Marginalities

The failure to acknowledge their complicity in committing discursive crimes against

disadvantaged women, was the feminists’ biggest fault as they endeavoured to publicise issues.

This is due to what Fellows and Razack (1998: 335) refer to as the “competing marginalities”.

This occurs when we harbour a deeply entrenched certainty that our specific marginalisation

should be privileged over that of others. While we might witness their excruciating poverty,

exclusion and pain, we remain convinced that our unique challenges are significantly greater.

Therefore, we prioritise their resolution first. In so doing, we become co-conspirators with

oppressors (Razack 1998). Nevertheless, we hastily attempt to prove that we are not guilty of

this in order to alleviate our guilty consciences. Thus, us engaging in any activity geared at

highlighting the plight of others no longer stems from a place of compassion but obligation.

I will illustrate this concept further using a hypothetical post-Apartheid feminists’ dilemma. In

the section above, I referred to the tactful rejection of women from Parliament (Hassim 2005).

Effectively, they were denied the opportunity to vocalize issues that are pertinent to all South

African women. Thus, whether they were conscious of it or not, feminists became the

mouthpiece for every female who could not speak for herself. However, drawing from Fellows

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and Razack’s (1998) work, it can be argued that these representatives were governed by a belief

that their struggles were greater than the average woman’s. Despite not being subjected to the

same economic deprivations, there remained the inner conviction that their political

subjugation was of greater import. To this class of woman, the struggle for quality healthcare

or equality in the household seemed easier to resolve than the political indifference they were

subjected to. I would then argue that this belief in the urgency of their struggles reduced their

efficacy as female ambassadors.

From Fellow’s and Razack’s work (1998), it appears that processing challenges solely at a

cognitive level is another area where feminists were lacking. Their work suggests that merely

observing as opposed to undergoing certain experiences diminishes empathy towards others.

“We are likely to consider their claims as unfounded. In essence, we view other women through

the lens of our own superiority and utilise dominant explanatory frameworks to explain to

ourselves the meaning of their lives” (Fellows and Razack 1998: 340). From this we gather that

the inclination to theorise peoples’ pain away desensitises us to it. As a result, we become

detached voyeurs of it as opposed to vicarious participants. If we have minimal to zero

emotional investment in seeing life through the eyes of others, we are rendered ineffective as

their representatives. Further, regarding them with superiority and incredulity invalidates the

severity of their challenges. It implies that we want them to furnish us with evidence to prove

that this is indeed the case. This unspoken expectation then makes us co-creators of their

marginalised states as opposed to collaborators in its resolution. This background of exclusion

at the hands of those who claimed to be their public defenders, further reinforced the subaltern

status of black women.

From Subordination to Exploitation

Historically, the subaltern were never able to celebrate the magnificence of their cultural

uniqueness. A powerful West invalidated it publicly, while coveting it discreetly. In the

instances when they appeared agreeable to subaltern cultural offerings, there were usually

nefarious ulterior motives. As Brennan (1997:8) in Handrinath 2006:16 points out, “what

might appear to be gestures of openness to alternatives, or solidarity with marginalized cultural

forms and peoples, can all too easily become instead marks of the old, familiar dynamic of

appropriation”. I will illustrate the accuracy of this point through the traditional healer and

medical doctor dichotomy. In South Africa, relations between the two healing communities

have always been tense because of the unremitting criticism from medical doctors (Tomaselli

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2011; Thornton 2015). Aside from the constant backlash, traditional healers were reluctant to

collaborate with them due to concerns around exploitation. This could happen through their

western colleagues extracting copious amounts of knowledge from them, without crediting

them for it. Worse still, they could potentially utilise the information to enhance

pharmaceuticals, generate massive profits and then legally deny them a share of it.

This fear of their medical acumen being misused is valid and cases of it occurring in other parts

of Africa have been reported. In the 1970s, a contingent of historians began recognising the

value of what they termed “traditional medicine” as a field of inquiry (Schumaker et al. 2007:

708). This sudden interest was prompted by their dissatisfaction with the manner in which

medical anthropologists conceived of subaltern healing histories (Schumaker et al. 2007). They

depicted Western methods as beyond reproach due to their scientific astuteness and universal

applicability. Traditional healing was criticised for not conforming to the standards of

rationality. In 2005, the mounting criticism of the dominant assumptions about the healing

methods of the Global South, culminated with the launch of the Hybrids and Partnerships:

Comparing Histories of Indigenous Medicine in Southern Africa and South Asia conference.

Several important issues emerged from the conference. Firstly, most biomedical practitioners

were intent on creating clear boundaries between their methods and ‘traditional’ or ‘alternative

ones’. From the discussions it was evident that they had supreme confidence in the “purity of

their practices as a bastion of modernity” (Schumaker et al. 2007: 710). As a result, they were

determined to defend them against being tainted by the “ineffective, dangerous [methods of the

Third World that also happened to be] an obstacle to development” (Schumaker et al. 2007:

710). This is a harsh statement considering that these allegedly unsafe healing techniques have

sustained generations from the Global South, since time immemorial. Further, while Western

medication may treat disease effectively, in the Third world the notion of healing goes beyond

physical wellness. As Ashforth (2005:217) discovered, it is intertwined with identity:

Western science seems irrelevant to the everyday misery of individuals and their

families…’science can’t prove anything about myself. It’s got to do with the planets, the

whole universe; The healer who can throw bones to divine the nature of a person’s

problems…is far more powerful when it comes to proving things about the ‘self’…to doubt

that it is every bit as powerful as white science, however, is tantamount to betraying a lack

of faith in Africa and Africans

Thus, we can gather that the average African person prefers traditional healing to Western

alternatives because of its connection to their reality. While the latter’s efficacy is not being

denied, when compared to the former, it is too detached from their daily problems to be a total

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remedy to them. The reference to planets further stresses the perceived isolation of the West

from the lived experienced of people in the Global South. From this vantage point, denying the

superiority of traditional healing is perceived as a denunciation of one identity and origins.

‘African Science’ practitioners: A Subaltern community?

Thus far, I have made cursory allusions to traditional healing being bothersome to biomedical

doctors. This warrants a more focused examination because many influential First World

scholars brusquely dismiss it as murky and regressive (Nelms and Gorski 2006; (Mathibela et

al. 2015). This is despite it being meaningful to many in the Third World (Merriam and

Muhamad 2013). Further, the discussion above highlighted how the profitable aspects of

traditional healing are extracted by the West at their convenience. Not only do they not credit

their sources, they alone determine the terms and outcomes of these exploitative interactions.

As a result of this shrewd manoeuvring, the subaltern status of the traditional healer is not

immediately obvious. By that I mean that the true effects of globally being considered a medical

underling, is seldom acknowledged. With this background in mind, the discussion below

examines some of the ways in which the discreet marginalisation manifests itself:

Firstly, consideration is seldom given to the fact that traditional healing communities

differentiate between medication that is utilized for the wellbeing of patients and that which is

potentially dangerous. The Zulu term for harmful poison is umuthi omyama (black muthi) and

umuthi omhlophe (white muthi) is safe medicine (Ashforth 2005:212). However, the literature

seldom makes this distinction, which I would argue gives the impression that it is all lethal.

Unless one pores over dense literature on the subject of traditional healing, it is unlikely that

one would be aware of this. The readily available information on the field gives the impression

that medicine from this community consists entirely of arbitrarily concocted mixtures, procured

from unqualified novices and consumed by the gullible.

Further, while the biomedical community now grudgingly refers to the work of their traditional

colleagues as “African Science” (Ashforth 2005:212), that too belies the almost indiscernible

aloofness towards them. Typically, when phenomena are labelled as ‘scientific’, it is assumed

that they have been rigorously evaluated in a structured setting (Mathibela et al. 2015).

Therefore, it is trustworthy. The inability to experiment with and then verify the efficacy of

traditional medicine has been one of the central gripes from Western doctors (Mathibela et al.

2015). Therefore, I would cautiously infer that prefacing the word ‘science, with ‘African’ is

done to deftly, yet emphatically separate themselves from their unempirical peers. It is as if to

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proclaim to the watchful eyes of the world that this branch of medicine belongs to the ‘Other’,

who are African. It is as if to say: ‘this is their version of science that we from the sophisticated

West do not endorse’.

My reading of what appears to be almost imperceptible distaste may be incorrect. However, it

is an interpretation that stems from a torrent of literature that has been consistently critical at

best and unequivocally derogatory at worst. This of course has been primarily from European

scholars. For example, Dr Evans-Pritchard once stated the following:

the witchdoctor is a diviner and a leech…they have no status except when functioning. The

training and initiation of a novice is described in detail… It consists, briefly, in drinking

medicines, learning the nature and method of preparation of plants used for charms and

leech craft, in ritual burial and swallowing witchcraft phlegm” (Evans-Pritchard 1937: 286).

The comparison of a traditional healer to a leech implies that they are parasitic. This could be

an inflammatory statement because it connotes a dependence on external parties for survival.

In reality, the majority of traditional healers pride themselves on being a self-sufficient and

exclusive group (Thornton 2015). Membership into it requires a rare combination of spiritual,

pharmacological and interpersonal skills (Thornton 2015). However, the language employed

in the quote above is corrosive in that it sloughs off the import of the services they offer. It

conveys a strong repugnance towards them. Further, it underlines how they have no identity

outside of their seemingly ludicrous and opportunistic practices. While this excerpt could be

overlooked because it was extracted from a significantly dated study, its poor summation of

traditional healers remains a persistent theme even in contemporary work.

Additionally, when traditional healing is not being attacked, it is mocked. In public, the more

outlandish stereotypes are regurgitated to the extent that any rational human might be inclined

to consider the field a parody of legitimate medical practices. Ashforth’s (2005:213) findings

attest to this:

Healers claim to be able to cure every disease (including AIDS, though many know better

than to mention this to outsiders now) and to remedy every misfortune ever suffered. A

typical healer will advertise abilities to supply muthi to protect your house against burglars

and your car against hijackers, to keep your husband faithful, to help your children pass their

exams, and to keep your boss at work happy. He will also have muthi to cure your high

blood pressure, diabetes, swollen ankles, and whatever else ails you, although legions of the

dead must be regretting the day they gave money to healers claiming to be able to turn

bullets into water

We can safely presume that every rational person is aware that no herb or pill can magically

improve every facet of life. Thus, I surmise the extract as an attempt to illustrate the presumably

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overwhelming irrationality of healers. Claiming to have an omnipotent antidote to every

problem known to mankind, would eliminate the need for any scientific or spiritual

intelligence. Thus, by highlighting the absurdity of those who believe it exists, Western

researchers expose their regard for traditional healers as the antithesis to logic.

The Duality of Traditional Healing

If the jeering at traditional healing was not utilised to elevate the biomedical community to

global medical supremacy, it might not be as injurious. However, very often, the latter’s

expertise is aggrandized at the expense of the former group. For instance, scholars in this area

tend to frame their observations of traditional healers in a manner that evokes terror. While

some are valid given the element of risk that is present where disease and its treatment are

concerned, others border on preposterous. Admittedly, the patients who consult the healers are

partially to blame for the fabrication and dissemination of the implausible stories. To this end,

the literature is rich with tales of practitioners that can either transform into various creatures

(familiars) or influence them to do their bidding (Comaroff and Comaroff 1999). Allegedly,

their supernatural abilities include but are not limited to:

the ability to cling to walls like bats, nocturnal predators and cats,[…] they are unhindered

by the darkness and easily move about at night, like birds, they are capable of flight, before

committing their hideous crimes, they undress and shed the trappings of culture and

civilization and despite their nakedness, they feel no shame…familiars are animals in

appearance…they do not fend for themselves, but are fed like human infants. Familiars are

also capable of human-like communication, they listen to and understand their masters

instructions. However, the affinity between witches and familiars runs deeper than a mere

association or even the shared possession of certain features. In witchcraft human and

animal identities are not clearly separate, but appear as different manifestations of a single

form (Niehaus 1995: 520-521)

From this quote we can observe that this branch of healing is perceived as animalistic. It gives

the impression that those who practice it are governed by their baser instincts and cannot

extricate themselves from them. The need to strip naked and feel no shame, connotes a return

to a primal state of being, where neither rationality nor intellect feature. The capacity to then

communicate with and control animals is also indicative of a perceived oneness with them. I

would argue that research findings such as the one above, are further evidence of the

subordinate state of the traditional healer. Every society is replete with folklore that is gradually

woven and rewoven. However, it is worrisome when scientists present these fables as proof of

the antiquity of a healing community. It fits into the theme of a backward subaltern majority

that is bound to its obsolete customs, which has been propagated by Western scholars for

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decades. Importantly, it validates the narrative of the uncouth black man who is rampant and

in need of rescuing from himself. This proclamation of white pre-eminence is a common

occurrence in scholarship. It is captured artfully below:

In European literature, white is associated with purity, goodness, and rightness. It is the

symbol of positive and protective energy. Heroes and heroines dress in white. God’s

messengers and heaven are associated with white. Angels are painted in robes of white.

Black is associated with evil. Villains wear black. Black is a symbol of destruction. The

day that catastrophe strikes is called a black day. Black represents despair, anger and

rage…. “Dark Ages” are said to be a time when the “light of reason” was absent. The

Devil is called the Prince of Darkness, and Hell is said to be a place where the Light of

God does not reach…. (Zukav 2014:52).

The passage illustrates the rigid evaluation of virtue across colour lines. Everything that is

white is deemed as wholly worthwhile. Everything that is Black is resoundingly negative. It

has no redeeming qualities. The characters and events referenced above are commonplace, yet

the likelihood of society being fully conscious of the Black versus White associations is slim.

Thus, the insidiousness of the prejudice from the West to the Global South is further

accentuated. That said, this passage is a crucial example of a cornerstone of subalternity, which

is the one-sided requirement to prove value or worth (MacDonald 2009). All that is White is

promptly assumed to have intrinsic goodness. There is often no expectation to demonstrate

whether this assumption is accurate. Virtue is automatically transferred to it. However, all that

is Black is instantly evaluated as lacking and has to verify that it also has significance.

Traditional healers have to mitigate the fears of the West. They need to subject their medicines

to the scrutiny of their peers in order for them to be accepted as useful. For instance, when

mastectomies were the sole medical option for breast cancer patients, doctors did not feel

inclined to seek validation about its propriety from traditional healers (Thorne and Murray

2000). There was no expectation to justify how the act of severing a treasured body part, could

be virtuous. It is in these unchallenged hypocrisies that the superiority complex of the West

rears its head.

Criticism

Thus far I have examined several questions that the Subaltern Studies group raised in order to

contest the dominant assumptions and inequalities that propagated the repression of people

from the lower classes. Their efforts yielded many positive outcomes such as the exposure of

the stealthy yet powerful strategies that were employed to keep the subaltern subdued and

submissive. Further, their intellectual crusade inspired other great thinkers to step forward and

do the same. However, despite its achievements, the subaltern studies field is not exempt from

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criticism. Earlier in the chapter I skirted briefly around how some of the original members later

became its toughest critics. I will now outline some of their concerns in order to strengthen the

chapter. Further, I hope to convey that while I am an ardent supporter of the subaltern

movement, I am not oblivious to its limitations.

A scholar whose work critiques from a place of discernment as opposed to malice, is Vinay

Bahl. In 1997, he collated his concerns in a piece titled “Relevance (or Irrelevance) of Subaltern

Studies”. His biggest concern was that with the passage of time, the subaltern studies cohort

strayed from their primary goal which was to take a bottom-up approach to revising history

(Bahl 1997). They would then “replace it with the study of the culture of the people” (Bahl

1997: 1333). While the intent was admirable, Bahl (1997) criticizes the textual approach that

they utilized in their attempt to rewrite this wrong. To this end he states that:

what is missing, however, in their analysis is: how do social order and social institutions

articulate in the formation of the subject (individual); or how is the link between social and

psychic reality to be spelled out, let alone how it should be theorized? In short, subaltern

studies left out from their consideration material culture, such as clothes, food, furniture,

living and working conditions, housing, technology and financial system, and failed to show

how material culture is produced by human agency in the process of social interaction.

Moreover, this material culture is also important in the formation of the value culture of

people

From the excerpt, we gather that Bahl (1997:1333) believes that the predominantly textual

methodology to representing the subaltern compromised their inquiry greatly. They were too

focused on deconstructing what was captured in the texts that they neglected to interrogate

peoples’ on the ground-realities. Further, the tone of Bahl’s (1997) words indicate that he

believes that the core of who people are, is constituted in what he calls material culture. It does

not reside exclusively in historical accounts. Instead, it is assimilated into people’s daily lives,

the clothes that they wear and the agency they demonstrate as they formulate their cultural

values and identity. Unfortunately, the subaltern contingents’ preoccupation with texts blinded

them to this-thus making their work redundant.

Secondly, Bahl (1997) states that despite being resonant- particularly with a younger generation

of intellectuals, the field should not be a philosophy that is studied “just for the sake of

having…a… passing fad” (Bahl 1997: 1333). Fundamentally, Subaltern Studies should not be

permitted to be a discipline that criticises social imbalances merely for the sake of being critical.

Instead:

If we wish to remove the elitist bias from history and empower people, as proponents of

subaltern studies claim they wish to do, then my suggestion is that we rethink it with one

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goal in mind: to be guided by philosophies that enable us to change our ‘miserable’ reality

as it exists today… (Bahl 1997: 1333)

Bahl (1997) believes that in order for the subaltern collective to not drift from their objective

of empowering the subjugated masses, they need to re-evaluate their current direction. In many

ways they are deeply embedded in deciphering India’s history and erasing the elitist slant

within it. However, perhaps they should adjust their philosophising, and make it pertinent to

the struggles of contemporary subaltern communities.

Importantly most of the subaltern studies scholars were more affluent than the average Indian

person. Therefore, to an extent, their interpretation of regular life events could have lacked

authenticity due to their worldview being vastly different to that of the lower classes. In my

view, they were a group of exceptionally smart, yet upwardly mobile individuals, who were

speaking on behalf of the underprivileged. Thus, despite having pure intentions, their construal

of events that they had not lived through themselves, could have contributed to the exclusion

of the same voices they meant to introduce into discursive spaces.

Maggio’s (2007) work highlights this very avoidable trap that well-meaning intellectuals fall

into. From her words I could deduce that she wants emerging scholars like myself to be wary

of the inherent danger in assuming that our interpretation of subaltern realities is empowering

to them (Maggio 2007). Our accounts of their lives completely defy the logic of empowerment

because it demonstrates a level of hauteur in us. We position ourselves as the benevolent

interpreters of their reality (Maggio 2007). In actuality however, when we speak for them, we

provide what is (at best) a superficial account of their lives (Maggio 2007). Further, we

unconsciously condemn them to a life of being silenced (Maggio 2007). This will be discussed

more thoroughly in an upcoming chapter on self-reflexivity.

The Growing Need for a Culture Centred Approach to Health Communication

The previous discussion of Subaltern Studies examined how the significance of minorities and

their culture was neglected for a long time. Further, it exposed the general invisibility of the

lower classes on various discursive platforms (Guha 1981; Chakrabarty 1985; MacDonald

2009). Gradually, several voices began to question the causes and the consequences of this

discursive neglect (Guha 1981; Spivak 1988; Chakrabarty 1985; MacDonald 2009). Initially

they were a small constellation of critics expressing their discontent. Progressively, they

evolved into a powerful movement whose concerns resounded throughout the world. Now that

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the issues of the marginalized have been thrust firmly into the glare of the globe, the following

has happened:

Firstly, there is now dialogue around the forces that act to ensure that they remain ostracised

(Airhenbuwa 2000-2004; Dutta 2008; Dutta-Bergman 2005). To this end, the Third World’s

scholars are vigilant about exposing both the macro and micro structures that relegate their

people into the realm of opacity (Airhenbuwa 2000; 2004; Dutta 2008; Dutta-Bergman 2005).

Secondly, while the Third World has yet to be fully on par with the First World in terms of

intellectual exchanges, measures to rectify this are being taken steadily. C.O. Airhenbuwa and

J. De Witt Webster (2004:6) refer to this commitment by Third World scholars to defining

context specific theoretical approaches as “epistemological vigilance”. Most importantly

however, is the increasing inquiry into the link between culture and peoples agency

(Airhenbuwa 2000; 2004; Dutta 2008; Dutta-Bergman 2005). The world’s greatest minds have

finally come to the realisation that culture is a prerequisite to the adoption of their

transformative philosophies. For this study where the goal is not to impose knowledge but

rather to acquire it, being cognisant of culture is of paramount importance.

I, like my predecessors in health communication research recognise that people behave in

culturally sanctioned ways (Mdondolo et al. 2003). What is tolerable within one cultural

context, may be strictly prohibited in another. Further, culture influences the applicability of

even the most innovative behaviour change recommendations (Airhihenbuwa 1995 Dutta-

Bergman 2005, Dutta 2006). To illustrate this, in the previous chapter I referenced a breast

cancer patient’s recommendation for the participation of men during breast cancer

examinations (Grimes and Hou 2013). She argued that male hands could detect abnormalities

more competently than female ones that are perhaps too acquainted with breasts and

impervious to changes. Additionally, she asserted that this could alter men’s regard for breasts

as exclusively sexual fixtures (Grimes and Hou 2013). Instead, they could gain a newfound

appreciation of them as organs of immense value to females and their identities (Grimes and

Hou 2013). Further, men could have an enhanced understanding of what their being diseased

or excised means to women (Grimes and Hou 2013). While these recommendations may be

valid and hold massive promise for improving communication between the genders, it is the

cultural milieu that determines their viability. In patriarchal communities where it is taboo for

men to involve themselves in female affairs, they would be impractical.

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Mohan Dutta (2008) suggests that the recent tilt towards culturally sensitive communication

approaches is partially motivated by the awareness that making an individual the sole target of

change interventions is ineffective. This is because “individual-level focus excludes other key

factors from the realm of health” (Dutta 2008:50). Culture is amongst these factors that either

enable or inhibit health related behaviour changes (Orgard 2006). Other notable components

include social structures (Dutta 2008). A person may have every intention of abiding by certain

health recommendations, yet, the alignment or lack thereof of these factors then constrains their

doing so. Dutta (2008) uses the example of the HIV/AIDS crisis to further support his assertion.

He states that over the years this issue has led to health communication practitioners developing

a myriad of strategies to stem the tide of new infections, to no avail. The bulk of these

interventions were geared at the individual and they focused on encouraging “him/her to

engage in safe sex practices such as abstinence, using condoms or disclosing HIV/AIDS

identity” (Dutta 2008: 50).

However, “absent from the articulations of this problem are factors such as socio-economic

status, access to resources, shifting cultural norms, community-wide decision networks of

gender inequity and relationship negotiation, and so on, which are central to the negotiation of

safe sex” (Dutta 2008:50). Thus, while an individual could be receptive to HIV/AIDS

messages, living below the poverty line for instance, could propel them into unsafe activities

in return for the façade of economic stability. Equally, they could be eager to practice safe sex,

but dissuaded by the sociocultural stereotypes around that. In sum, there is a multitude of

dynamics that act to either hamper or inspire the adoption of responsible choices. The narrow

focus on the ones at the individual level is limited, because it discounts those that are beyond

people’s control.

Biases of earlier communication interventions

An important fact to be mindful of, is that early communication paradigms assumed several

conjectures that derailed the adoption of positive health and behaviour change

recommendations. The culture centred approach actively redresses them. The first was the

cognitive bias which:

is founded on the notion that information influences action by challenging the underlying

beliefs and attitudes. The informed audience will know how to practice the recommended

health behaviors, on the basis of changes in the belief structure induced through information

heavy messages (Dutta 2008: 54)

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Basically, this logic assumes a level-headed individual with the propensity to change once they

are furnished with information. Overwhelming people with specifics about the potential

benefits and negative repercussions of certain behaviours was considered as the ideal deterrent

to their risky actions. This conviction led to the creation of interventions that isolated

individual cognitive capacity and then elevated it above other behavioural influences. The

health belief model (Becker 1974) and Kim Witte’s Extended Parallel Process Model (EPPM)

(Witte 1992) are examples. The former purports that individual behaviour is dependent on

perceptions of severity, susceptibility and prospective benefits of abiding by recommendations

related to that behaviour (Becker 1974).

If for instance health practitioners were to encourage women to conduct regular breast self-

exams, the likelihood of them heeding this call would be dependent on the following: their

perceptions about whether breast cancer is indeed a threat; their perceptions about the possible

gravity of the disease and the perceived efficacy of breast self-examinations. The latter theory

is an enhanced version of earlier fear appeal theories, which were designed to terrorise their

target audience (Witte 1992; Green and Witte 2006). It was anticipated that the induced panic

would be sufficient motivation for them to avoid destructive behaviours. The EPPM improved

on this by adding a self-efficacy component to fear models (Witte 1992; Green and Witte 2006).

It demonstrated how instilling fear without developing people’s belief in their capacity to

successfully follow the health recommendations was futile. If people lack self-efficacy, they

are likely to create defence mechanisms that prevent them from processing health messages

(Witte 1992; Green and Witte 2006). Effective messages must be designed in a manner that

evokes fear in order to convey the harmful aspects of an issue, whilst cultivating the confidence

that they can successfully execute the accompanying health suggestion (Witte 1992; Green and

Witte 2006).

To illustrate this using the breast cancer issue, if health practitioners were to focus solely on

the grisly aspects of it, the likelihood of women ignoring those warnings is high. At its worst,

breast cancer reduces its patients to shadows of their former selves. Images of women who

have undergone mastectomies, experienced alopecia, and become emaciated by chemotherapy,

are harrowing to see. At a human level, observing them elicits an intense combination of

compassion and fear. Therefore, as a woman who is susceptible to breast cancer, processing

such an image without being informed about preventative measures could terrorise you into

disregarding the warning entirely. This would be a reasonable reaction as the thought of

succumbing to that level of incapacitation is challenging to contend with. However, if the

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traumatic images were accompanied by positive guidelines (such as regular mammograms),

the probability of receptivity to them is high. That said, both the Health Belief Model (Becker

1974) and the EPPM (Witte 1992) place immense significance on individual logic and neglect

other contributors to assumption of certain behaviours. Therefore, they were inadequate in that

sense. The culture centred approach can be considered an improvement because it lacks this

inflexibility and unyielding certainty about people’s intellect.

Decontextualized Bias

In an earlier chapter I discussed how people on the periphery are typically more modest and

reserved about discussing certain matters (Nelms and Gorski 2006; Meneses and Yarbro 2007).

Additionally, there are strict gender norms that regulate who can discuss issues openly and who

is forbidden from doing so (Nelms and Gorski 2006; Meneses and Yarbro 2007). Thus,

regardless of the volume of information that is proliferated about breast cancer, these social

rules restrict its utility. Therefore, it would be naïve to expect a sudden surge of Third World

women to seek mammograms upon being informed about their benefits. In Western countries

however, women are allegedly inundated by the influx of breast cancer information (Thorne

and Murray 2000). Further, there appears to be no boundaries that define matters that can be

discussed and those that must be circumvented. Therefore, in such contexts expecting dramatic

increases in the adoption of breast cancer recommendations, is reasonable. Such sharp

contextual contrasts are an indication of the ignorance that is inherent in disregarding the

import of context to health behaviour. It is this decontextualisaion bias that the culture centred

approach attempts to amend.

Status Quo Bias

Dutta (2008) asserts that earlier approaches to health communication did a great disservice to

marginalised people by ignoring the role of social structures to their health seeking behaviour.

He explains how the popular health models such as the HBM (Becker 1974) and EPPM (Witte

1992) were fixated on the individuals, at the expense of recognising the structural influences

that impeded their agency as they sought health services. In so doing:

the dominant approach[es] serve… the status quo, ignoring the roles of status readjustment

and redistributive justice in the realm of health experiences of individuals in the

marginalized sectors of the world…theories of health communication ought to put poverty

and the lack of basic resources at the heart of theorizing; basic capabilities need to be taken

into account… (Dutta 2008:54)

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The ‘status quo’ being mentioned above is the tacit consensus on the immunity to the

predicament of the lower classes. From Dutta’s (2008) quote we gather that he is accentuating

how these theories were developed by the First World, which has a documented history of

instituting measures to suppress those on the margins. Naturally, the interventions they

proposed adhered to this mandate to suppress the underprivileged. We can deduce this from

the fact that structural shortcomings such as poverty and limited resources are discounted.

Instead, the blame for poor health is assigned predominantly to the individual (Dutta 2008). In

truth, even the most determined patient cannot contend with scarce resources. Hypothetically

speaking, a woman who suspects she has cancerous lumps and seeks medical attention would

have that agency curtailed if her local clinic lacked qualified oncologists. Or, if she detected

them herself but her local district did not have a functional oncology unit- that could also

restrict her treatment options. Therefore, refusing to acknowledge structural absences or

inadequacies is short-sighted. Opting to do so feeds into the First World’s antiquated

assumptions about the ‘backwardness’ of developing countries (Melkote and Steeves 2001).

Control Bias

The status quo bias is somewhat interlinked with what Dutta (2008) refers to as the control

bias. It refers to:

the development and implementation of communication strategies directed at a target

audience such that the beliefs, attitudes and behaviours of that audience might be changed.

The goal here is persuasion on the basis of the problem and solution configurations as

conceptualised by the senders of the message (Dutta 2008: 54)

Essentially, this concept denotes the Wests desire to control the margin’s comprehension and

response to illness. It fulfils this need by devising what it perceives to be the most appropriate

treatment. It then imposes this onto the marginalised public through health communication

campaigns. Dutta (2008) states that often, a health issue is typically isolated, along with what

is deemed as the best treatment approach. Should members of the public opt for an alternative

route to healing, their decision is interpreted as a silent refusal to submit to the preferred course

of action.

A prime example of this would be the decision to manage breast cancer through the traditional

healer route. I have tirelessly highlighted how traditional healers are subjected to contempt

from their biomedical peers, on account of their alleged lack of proficiency (Nelms and Gorski

2006; Muller and Steyn 1999). The mere fact that it took decades before collaboration with

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them became a possibility, suggests that they posed a threat to the total control that medical

doctors had grown accustomed to (Muller and Steyn 1999; Campbell-Hall et al. 2010).

That said, what I perceive as the main problem with the control bias is its inflexible and narrow

evaluation of health matters. Its singular fixation with prioritising western knowledge inhibits

the consideration of other healing avenues. While they may not always produce the anticipated

results, generally, every established healing field has strengths that can be enhanced. For

instance, in the previous chapter I mentioned that traditional healing tends to enrich the

psychological health of patients (Campbell-Hall et al. 2010; Muhamad et al. 2012). It may not

have the same level of technical precision as the biomedical field, yet, the psychological aspect

remains a significant quality that should not be disregarded (Muhamad et al. 2012). Ofcourse,

appreciating this fact requires open-mindedness.

Key Characteristics

Mohan Dutta, who is the main proponent of the culture centred approach identifies the

following as its key qualities:

Firstly, is its focus on voice and dialogue (Dutta-Bergman 2005; 2008). The allusions made

throughout the dissertation indicate the inability of the Third World to articulate itself to the

same degree as the West (Handrinath 2006; Bahl 1997). Further, tactics for combating illness

are conceived there before they filter to the Third World (Handrinath 2006). The culture centred

approach counters this trend by integrating “the voice of local communities into the ways in

which issues of health are understood, interpreted and communicated” (Dutta 2008:60). This

is accomplished through dialogic exchanges with people at grassroots level (Servaes 2008;

Melkote and Steeves 2001; White 2004). In this way, the approach creates an opportunity for

people to explore the best health options for them, instead of others speculating on their behalf.

It is important to note that other theoretical approaches have attempted to integrate the

perspectives of subaltern communities. However, the culture centred approach is distinct from

them because it demands heightened reflexivity from the communication professionals

(Servaes 2008; Melkote and Steeves 2001; White 2004). Preceding approaches endorsed their

being polite, but detached observers (Thornton 2008). However, the culture centred approaches

emphasises total immersion in order to fully appreciate people’s worldview. In so doing, it

forces the professional to interrogate and review their own subjectivities about the

underprivileged.

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In my case for instance, this approach necessitated a changed mindset towards my study

participants. I initially considered them as enormously distressed women who are either not

knowledgeable about breast cancer or too confined by sociocultural forces to seek help

promptly. Additionally, I perceived them as being extremely bound to the conventions of Zulu

culture and would never voluntarily enact behaviour that could compromise their identity as

members of this group. That said, if I apply the culture centred approach, I will need to abandon

these presumptions. Additionally, when I do interact with the participants, I will no longer

occupy the position of an emotionally absent, yet curious transcriber of their views. Nor can

they occupy the position of unassuming informants. The culture centred approach encourages

our interactions to be mutually transforming experiences (Dutta 2008; Dutta-Bergman 2005).

Structure

As mentioned previously, the culture centred approach is committed to uncovering the

influence of structure on people’s agency (Dutta 2008). “Structure refers to those organisations,

processes and systems in society which determine how that society is organised, how it

functions, and how individual members within it behave with respect to each other, to social

organizations, and so on” (Dutta 2008: 62). Thus, it is not merely about the facilities that people

visit when they are ill, but the procedures within them, the conduct of the professionals and so

forth. Additionally, Dutta states that “communicationally, structures constrain human action

by setting up communicative barriers” (Dutta 2008: 62). He then uses the example of the

mistreatment that homeless people encounter when they seek healthcare (Dutta 2008). The

manner in which important information is relayed to them is appalling (Dutta 2008). Such

communicative marginalisation is subtle and often unaccounted for. However, the culture

centred approach is committed to uncovering it because it is a major deterrent to health seeking

behaviours. “In other instances, structures create conditions of stigmatization which continue

to construct those at the margins as inferior, primitive and passive recipients of interventions

targeted at them” (Dutta 2008: 62). I would argue that this occurs due to a lack of representation

from those in the margins. Without this, it is difficult for them to challenge these deluded

stereotypes about them. Based on this logic, I could infer that the limited participation by

African breast cancer patients in global cancer conversations contributes to their being

stigmatised. In the previous chapter I mentioned how the only role they ever play in cancer

research, is that of curiosity inducing subjects of study. If this pattern does not change, they

will eternally be regarded as under-resourced victims of cancer. Without Africans to curtail the

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torrent of thinly veiled superiority disguised as compassion, ill-fitting Western strategies for

combating the disease will always be imposed onto them.

Context and Space

The culture centred approach also concerns itself with understanding how context and space

impact the health experiences of people on the periphery. “Context refers to the local and

immediate surroundings within which cultural members make choices” (Dutta 2008:63).

Essentially, it is the geographic location where people undergo their health crises and strategise

around appropriate routes back to wellness. Dutta (2008: 63) purports that “localised contexts

surround health meanings, health values, health beliefs, and health practices, and exist in a

continuous flux with the broader structures surrounding them”. This means that the notion of

health or lack thereof is constructed within specific locales. For instance, in Western settings,

mammograms are utilised to detect cancer. Upon diagnosis, a woman is considered ‘unhealthy’

or ‘ill’ regardless of how far the cancer has advanced. Further, various social structures such

as the media and oncologists actively encourage her to seek treatment as soon as she is able.

Conversely, in the Third World, for as long as she gives the outward impression of wellness,

she is considered ‘healthy’. It is only once the symptoms of disease manifest themselves

strongly that this assumption would change.

Importantly, the culture centred approach examines how space factors into health seeking

trends. Dutta (2008) asserts that people situated at the margins are subjected to discursive

exclusion because their location is so remote. As a result, “those at the centre have access to

positions of power and get to have a say on issues of policy and implementation, whereas those

without access serve as target audiences” (Dutta 2008 :63). Rarely, if ever do those situated on

the outskirts make recommendations that are heeded to the extent that they are decreed as actual

policies. My own summation of this ‘exclusion-due to- location’ argument is that it is a flimsy

justification for the continued marginalisation of the lower classes. Geography is not an

insurmountable challenge. It is merely varying positioning on the globe, which can be

transcended effortlessly. Despite this, we have yet to see expertise from periphery being

transported to the West. That said, the culture centred approach is dedicated to questioning

these imbalances.

Values

The culture-centred approach is particularly sensitive to examining how values influence our

conception of health problems. Of course, our values are informed by our cultural environment

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(Dutta 2008). Dutta (2008) then draws on the example of population growth to illustrate this

point. He explains how large families are typically frowned upon in the West, in favour of

nuclear ones comprising of 2 children. Dutta (2008: 65) states that deviating from this standard

is considered “deviant, primitive or abnormal. This strong condemnation arises from the fact

that financial stability is a highly coveted goal in that part of the globe (Dutta 2008). Therefore,

children then become liabilities who restrict people from fully revelling in the joy of financial

freedom. Conversely, in the Global South, people consciously choose to have many children

because they value collectivism as opposed to individualism (Dutta 2008). Despite being

resource poor, the principle of sharing is privileged above all else. Joy is derived from the

harmonious division of whichever scant resource is available. In fact, the West’s “message of

population control programs, which discusses the joys of well-planned nuclear families, might

be seen as epitomizing individual greed and materialism” (Dutta 2008:65). From these differing

perspectives, we can gauge how culturally entrenched values determine issues that are deemed

problematic or trivial. Also, the culture centred approach maintains that health communication

professionals must be mindful of values prior to implementing intervention because of their

connotations.

The Capabilities Approach

Subaltern Studies and the Culture Centred Approach are fertile ground for the excavation of

information pertaining to the muting and exclusion of minorities. Both schools of thought suit

the purposes of this study, because these themes are central to it. That said, the goal is to be as

pedantic as possible in seeking answers to the research questions. The Capabilities Approach

has several attributes that can aid in this endeavour.

Fundamentally, it is a framework that was popularised by Amartya Sen (2009) and further on,

Martha Naussbam (2000; 2003) enhanced it by injecting insights that were drawn from her

work on human rights.

Ingrid Robeyn’s (2007:93) definition encapsulates it thus: “the capability approach is a broad,

normative framework for the evaluation and assessment of individual well-being and social

arrangements, the design of policies, and proposals about social change in society”. Essentially,

it is a line of reasoning that concerns itself with evaluating people’s levels of functioning and

the contextual factors that permit or inhibit that. Also, it explores strategies to improve on this.

Sen drew the inspiration for this approach primarily from the work of political philosopher

John Rawls (1971). However, traces of it can be detected in the work of many influential

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thinkers such as Aristotle (Sen 2009). Therefore, Sen’s theory can be accepted as an advanced

amalgamation of philosophies, with Rawl’s (1971) being the most recognisable. Due to it being

a hybrid of various ideas that are associated with scholars from different places and periods, “it

is not strongly linked to one particular cultural and historical tradition” (Nussbaum 2003: 39).

Sen’s work ensures that “when we speak simply of what people are actually able to do and to

be, we do not give the appearance of privileging [either a Southern or] Western idea”

(Nussbaun 2003: 39).

Rawl’s work focused strongly on what Sen refers to as the “justice is fairness” principle (Sen

2009: 54). Here, the notion of justice is distilled to unequivocal equality and homogeneity

across various social spheres such as economics. Due to historical complexities and other social

dynamics that cannot be redressed easily, Sen perceived Rawls theorising to be limited. Before

we justify that further, let us discuss the qualities of the Capabilities Approach.

Key Traits

At its crux is a preoccupation with people’s capabilities, that is, investigating what they are

able to do, attain, achieve (Sen 2009). Sen states that “the idea of “capability” (i.e. the

opportunity to achieve valuable combinations of human functioning-what a person is able to

do or be) can be very helpful in understanding the opportunity aspect of freedom and human

rights” (Sen 2009:153). Therefore, if the fulfilment of needs is a stipulation in the bill of rights,

employing the capabilities approach can support the identification of hindrances to this.

Further, the capability to live a life that one deems as valuable is strongly highlighted in the

approach. To this end, Sen believes that policies should be adjusted to facilitate this.

Despite being an economist, Sen’s work digresses from the path followed by his peers who

evaluate quality of life in terms of economic prosperity. He eschews the idea of access to

primary goods as the sole or central indicator of wellbeing (Sen 2009). He maintains that their

true value lies only in how effectively they can be converted into functionings. Robeyn

(2007:99) succinctly clarifies this thus:

The relation between a good and the functioning to achieve certain beings and doings is

influenced by three groups of conversion factors. First, personal conversion factors (e.g.

metabolism, physical condition, sex, reading skills, intelligence) ... Second, social

conversion factors (e.g. Public policies, social norms, discriminating practises, gender roles,

societal hierarchies, power relations), and third environmental conversion factors (e.g.

climate geographical location), play a role in the conversion from characteristics of the good

to the individual functioning).

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From this we can deduce that the mere availability of a hospital for instance, is a means to the

realisation of a health goal. It is not an end in itself. However, through the alignment of

resources, people, social norms and values, it could be converted into that. For argument’s

sake, if mammograms were easily available to an underprivileged community, a personal factor

such as illiteracy could hinder a woman from converting it into a functioning. If she could not

read, she may not be able to comprehend the importance of these examinations. Or, a social

factor such as the expectation of female decorum could prevent females from consenting to

mammograms if they are performed by male physicians for instance (Muhamad and Merriam

2012). Moreover, if a woman lives in a rural area that is far removed from a hospital, this could

prevent her from benefiting from this health service. However, if the hospital was within close

proximity to her, if the medical staff met medical and social requirements and if she was

knowledgeable about mammograms, only then could her end goal be genuinely attained.

Essentially what this illustrates is that in some instances, people “need differing levels of

resources if they are to come up to the same level of capability to function. They also have

differing abilities to convert resources into actual functioning” (Nussbaum 2003: 35).

Additionally, when we begin to perceive the notion of capabilities from this angle, “it bring[s]

out the importance of seeing suffering as a central feature” (Sen 2009:285). When it dawns on

us that there are human beings who cannot function as they should because of certain

impediments, we can feel that pain of deprivation. When we realise that there are others who

face the same situation yet cannot address it because of being disadvantaged somehow, the

injustice of that evokes pain. Thus, we can gather that theorists who view the abundance of

resources as the main indicator of equality, are short-sighted.

Another strength of the capability approach is its focus on authentically examining the obscure

issues that encumber people’s agency. Other theoretical models do provide an indication of

such limitations, however, this if often perfunctory. The capabilities approach is conducive to

a more nuanced investigation. Using the poverty issue to illustrate his point, Sen (2009:256)

insists that there are instances where a “coupling of disadvantages” can intensify the problem.

For example, if somebody is economically poor, their situation could become more dismal if

they were also disabled. This is because their earning potential would be greatly reduced. In

the event that they were elderly, with additional illnesses, this would further diminish their

capability to convert their meagre earnings into meaningful functionings. In such a case, the

likelihood of escaping their poverty is low. Such crucial information is rarely captured in

frameworks that are designed to examine issues only at the surface level. However, through

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the use of the capabilities approach, it could be highlighted. In that way, opportunities to devise

strategies to address these issues can be devised.

Also, Sen’s insistence on context scrutiny is important because it dissuades us from making

totalising assumptions about the communities we study. The understandings of normalcy and

entitlement vary from one social setting to the next, therefore, we need to always be cognisant

of that. In some communities, people are able to differentiate between what is lawfully due to

them and nonessentials. Sen (2009) substantiates this through an analysis of how social forces

anaesthetise people from fully grasping the extent of their oppression. He states that in

instances of severe deprivation, our psyche neutralises the intensity of these experiences by

numbing us to them. In this way, we are protected and able to function, albeit minimally. This

is particularly true for “the traditional underdogs, such as oppressed minorities in intolerant

communities, sweated workers in exploitative industrial arrangements, precarious share

croppers living in a world of uncertainty, or subdued housewives in deeply sexist cultures”

(Sen 2009: 283).

According to Sen, the ‘adaptation of expectations and perceptions tend to play a particularly

major part in the perpetuation of social inequalities, including the relative deprivation of

women” (Sen 2009:283). South Africa has a time-honoured tradition of treating women like

second-class citizens in every arena. This trend alone corroborates Sen’s arguments. In an

earlier illustration, I highlighted how they are expected to mould entirely to their husband upon

marriage (Pillay 1994). In many instances, this entails the total forfeiting of their financial

assets and identity (1994). Some contemporary Zulu folks are renowned for this type of

financial and emotional plundering of their women. Such acts of pillaging are justified through

the custom of ukuhlonipha or respect (Rudwick and Shange 2009). Historically, the expectation

was that every individual should extend this to everyone regardless of age, sex or gender

(Rudwick and Shange 2009). With the passage of time, it has been dexterously altered to

accommodate men. Women who wish to secure the place amongst their people have to adhere

to it or face ostracism for being too outspoken. Vocalizing discontent threatens the position of

their men as the sovereign powers in their communities (Rudwick and Shange 2009). Such

independence is associated either with uncultured women who were reared ‘poorly’ or those

who have committed the ultimate treachery by adopting so-called European ways (Rudwick

and Shange 2009). Essentially, women who fail to conform to acceptable standards of

ukuhlonipha are shamed into silence.

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Sen (2009:283) further asserts that upon recognising the futility of their situation, the

marginalised “may lack the courage to desire any radical change and typically tend to adjust

their desires and expectations to what little they see as feasible. They train themselves to take

pleasure in small mercies”. Basically, the reality of the forces that constrain full functioning,

extinguishes any rebellion in them. As a coping mechanism, they find solace in any act or

occurrence that that gives them some reprieve from their oppression. If we apply this logic to

the issue of Zulu women being pressurised to adhere to the ukuhlonipha custom, we can deduce

that it is somewhat accurate. Rudwick and Shange (2009) discovered that despite being aware

of how it subordinates them, the women were unwilling to challenge the custom. For one, it

afforded them a sense of security and belonging within their marital homes. Of course,

acceptance from one’s family should be freely given. Ideally, it should not be conditional.

When it is withheld until a certain behaviour is demonstrated, it may not be genuine and thus

not worth having. Therefore, the fact that the women appear content to be rewarded with it

after earning it through subservience demonstrates how thoroughly subjugated they have

become.

The Importance of Freedom in Evaluating Capability

Another central concern of the Capability Approach is on the degree of autonomy individuals

when specifying the quality of their functionings. This is an important human right that is

particularly significant to subaltern people, who have had it violated for centuries. If we remove

the secondary issues that emerged as a result of the formation of the subaltern studies group,

we can appreciate that the cause of the outcry was being denied freedom. That is: the freedom

to participate in the documentation of their histories, the freedom to have their voices inserted

into a global conversation about who they were and their ancestors before them, the freedom

to be regarded as equals to their Western peers and so forth (Guha 1981, Sarkar and Chatuverdi

2000; Chakrabarty 1985). In South Africa, our global identity is synonymous with freedom or

rather the lack of it (Cooper (1994). 24 years after we celebrated our newly acquired status as

free people, we are still adjusting to the transition-hence my appreciation of Sen’s emphasis on

it being a human right. He insists that freedom should be a political goal and substantiates his

position with an illustration (Sen 2009). He argues that there is a difference between someone

who is classified as poor and therefore has no access to food, and someone who does, but opts

not to eat for personal reasons such as fasting (Sen 2009). The former has no choice in the

matter, whilst the latter does. Thus, political structures should construct an environment where

both parties have the freedom to choose how to utilise their freedom.

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Historically, politics was no respecter of choice (Cooper 1994; Comaroff 1998). People simply

adjusted to whichever stipulation was foisted onto them. This aspect of the Capability

Approach is of utmost importance to this study because the literature suggests that breast cancer

rates are as high as they are due to the denial of certain freedoms. A lack of access to

information to reliable information could be interpreted as an encroachment on freedom. This

is so because knowledge can be converted into power through seeking early mammograms and

so forth. Further, if someone is educated they are aware of the opportunities available and can

then choose the best healthcare options for themselves. In this way, they have the capability to

function in a manner that is in alignment with their definition of a valuable life.

Nussbaums Expansion of the Capabilities Approach

As aforementioned, the capabilities approach is flexible in that it can be utilised to assess

virtually any situation that pertains to human well-being. Various scholars have employed it in

their work, however, the most notable is Martha Nussbaum (2000; 2003). She and Sen speak

the same language when examining social factors that potentially worsen the human condition.

What makes Nussbaum’s version of Sen’s theory applicable to this study, is its feminist slant.

She ardently utilises the approach to scrutinise issues of freedom and equality across genders

(2000; 2003). In her work we can identify her commitment to detecting how gender differences

act to subordinate females (Nussbaum 2003). In this way, her development of Sen’s original

idea is superior. In fact, I would argue that to an extent, it is stronger than the Subaltern Studies

perspective which typically examines a vast array of topics around subalternity. With the

exception of scholars such as Giyatri Spivak, the subaltern studies faction rarely focuses

exclusively on female marginalization.

Another area of divergence between Sen and Nussbaum is on the subject of a definitive list of

capabilities (Robeyns 2007). Despite being the originator of this theory, Sen has always been

reluctant to create a list of capabilities that governments and researchers alike can draw from

as they make their assessments. Nussbaum on the other hand insists on a list because it would

be a benchmark to aim for when determining “to what extent equality of capability ought to be

a social goal or how it ought to be combined with other political values in the pursuit of justice

(2003:36). Thus, instead of vaguely pontificating about how structures such as government

constrain people’s capacity to function, there could be a decisive list illustrating those specific

infringements. In this way, instead of merely stating that an entity such as a hospital hampers

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patients’ capability to improve their health, we could pinpoint how this was done. Further, we

would have a drawing board to refer to when we are in doubt about how to rectify that.

When defending his reluctance to subscribe to a predetermined list of capabilities, Sen (2009)

argues that it would contradict the freedom aspect of his theory. It could be considered

hypocritical to claim to advocate people’s autonomy and to then dictate a list of what you

believe their capabilities should be. Sen (2009) maintains that it should be up to a specific

community to determine this, as sociocultural environments vary. What might be a highly

prioritised function in one area, could be irrelevant to another. That said, Nussbaum argues that

“there is a big difference between pushing people into functioning in ways you consider

valuable and leaving the choice up to them” (Nussbaum 2003:40). What could be considered

reasonable compromise would be to “combine the capabilities analysis with the language of

rights” (Nussbaum 2003:40). In this way, you combine what is a theoretically sound

conceptualisation of human capabilities with what they are entitled to legally.

With this logic in mind, Nussbaum (2003:41) developed her list comprising the following ten

capabilities: 1) life, 2) bodily health, 3) bodily integrity, 4) senses, imagination and thought, 5)

emotions, practical reason, 6) practical reason, 7) affiliation, 8) other species, 9) play, 10)

control over one’s environment. Nussbaum is adamant that this list is not exhaustive, so she

continually revises it to accommodate people’s changing needs. Importantly, she is unyielding

in her conviction that “a society that neglects one of them to promote the others has short-

changed its citizens, and there is a failure of justice in the short-changing” (Nussbaum

2003:40). She maintains that regardless of a community’s opulence or lack thereof, strides to

ensure that these capabilities are honoured can be made. Essentially, any forward motion

towards this is progress. Her list is important to this study because it can aid my examination

of how conscious my participants are of their capabilities. Further, it will be interesting to

understand which of these they prioritise and believe they are entitled to.

Conclusion

This chapter has presented three unique yet closely interrelated theoretical frames that underpin

this project. The unique attributes of each were explored comprehensively. The primary goal

of course, was to enhance the reader’s comprehension of the influences that have contributed

to the study participants’ present-day condition. Further, integrating these scholarly

perspectives sensitises the reader to the forthcoming narratives by the study participants.

However, let me be more precise with my rationale for including each theoretical perspective:

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Incorporating Subaltern Studies into this chapter was important to me because my motives for

conducting this study are similar to those of the originators of this field (Guha 1982;

Chakrabaty 1985; Sarkar and Chatuverdi 2000). Like me, they were committed to propelling

the voices of historically unheeded people into the mainstream, in a manner that genuinely

represents who they are. They chose to use the resources afforded to them by academia to

accomplish this goal. I chose to do the same. However, while their efforts were immensely

successful, they were not beyond reproach because their esoteric diction was more compatible

with intellectuals. Even as an emerging scholar, their writings were initially cryptic and

formidable to me. It took complete immersion and patient contemplation to fully grasp them.

This linguistic inaccessibility meant that the people that the subaltern studies cohort was

labouring to represent, were alienated (MacDonald 2009). Therefore, while their writings were

an indispensable guide for this chapter, it is my hope that I averted the aforementioned blunder.

If at all possible, my usage of this framework communicates the challenges of marginalised

people in an engaging yet infinitely deferential manner.

A further goal of this chapter was to dispel the myths that are often associated with Black,

disadvantaged South Africans. These include their being stereotyped as dependent and inept in

various ways (Cooper 1994). My discussion contended that these labels are utilised to trivialise

the magnitude of the challenges faced by Black people and to avoid revising history. My

rebuttal of these assumptions specified some of the injustices that were perpetrated on Black

South Africans. These included their being callously conditioned to have an enduring negative

self-concept (Fanon 1963; 1986). The intent behind this line of argument was to demonstrate

that the effects of this historical mistreatment has been inherited by the current generation of

Black people. Additionally, they may be more pronounced in Black women who are victimised

further through societal, cultural and political norms. As a result, this group is deserving of our

compassion and understanding because their ‘weaknesses’ are not a choice. They are merely a

by-product of a painful history. I tried to present this argument without the extensive use of

technical language. In this way, it will hopefully resonate with scholars and the laywomen who

inspired this dissertation.

The culture centred approach was included due to its capacity to intensely illuminate the

inconspicuous socio-cultural elements that influence people’s healthcare decision making

(Dutta 2008; Dutta-Bergman 2005; Dutta 2006). The literature that was utilised to support the

discussion demonstrated that socio-cultural forces are an overlooked yet monumental

obstruction to people accessing healthcare (Sen 2009). Further, older studies have implored

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new researchers to explore the role of socio-cultural forces on people’s agency as they seek

healthcare (Forte 1995; Taylor 2001; Sadler 2007). The culture centred approach was the only

immaculately developed framework that I could use to heed that call. It is hoped that my

analysis of its various components adequately communicates how arduous sociocultural

components can be on people from conservative and underprivileged communities.

Lastly, the logical solution to healing sick people is medical care. The accessibility of

healthcare is a taken-for-granted assumption (Dutta 2008). However, by integrating the

Capabilities Approach into the chapter I intended to challenge this notion. I utilised the

approach to highlight the impediments that underprivileged sick people need to overcome prior

to receiving treatment. Despite a genuine desire and concerted actions to regain optimum

health, it is often a mission. Ideally, this portion of the chapter should convey how our

placement on the social hierarchy informs our experience of healthcare. For the privileged

minority it is a right that they are entitled to. However, for the underprivileged majority, it is a

reward that they earn after overcoming numerous obstacles. Overall, it is anticipated that all

three theoretical frames laid the foundation for an empathetic interpretation of the study’s

findings.

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Chapter Four

Methodology

This chapter is a comprehensive discussion of the data gathering process. It specifies the data

collection tools that were utilised and the justification for selecting them. It commences with

an overview of what narratives are, their suitability to this study, the criticism that has been

raised against them and my refutation of that. From there, I briefly discuss the common patterns

that breast cancer narratives usually follow. In so doing, my goal is to demonstrate that previous

studies have carved a specific path for breast cancer narratives to follow. However, people are

unique, and their experiences can stray from this quintessential narrative trail. The portion of

this chapter that outlines the interviewing process is particularly thorough. It was approached

with precision in order to eliminate any confusion about the manner in which the narratives

were gleaned. Further, I outline the approach to evaluating and interpreting the findings.

Overall, the chapter condenses the mammoth-sized undertaking of acquiring and making sense

of information into a terse yet revealing report.

Narratives

With subject matter as intensely personal as breast cancer, it was imperative for each participant

to have an uncomplicated avenue for sharing her unique encounter with the disease. Narratives

fulfilled this requirement. That being said, utilising narratives during research inquiry is not

novel. Therefore, I am compelled to briefly justify my decision to integrate them into this study.

The vast majority of us seldom consider the fact that utilising narratives to make sense of the

world is an established practice. Barbara Czarniawska (2004) corroborates this by highlighting

the fact that even ancient, globally influential religious denominations connected with their

followers through narratives. She refers to the Bible, Talmud and Koran to support her

assertions (Czarniawska 2004). Gradually at the turn of the 19th century Vladimir Propp utilised

them in his examination of Russian folktales. They were developed even further by Mikhail

Bakhtin who had been influenced by Propp’s initial usage of them (Czarniawska 2004).

However, what is arguably the most profound overview of what they are and their utility in

society comes from Roland Barthes:

The narratives of the world are numberless. Narrative is first and foremost a prodigious

variety of genres, themselves distributed amongst different substances-as though any

material were fit to receive man’s stories. Able to be carried by articulated language, spoken

or written, fixed or moving images, gestures, and ordered mixture of all these substances;

narrative is present in myth, legend, fable, tale, novella, epic, history, tragedy, drama,

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comedy, mime, painting…stained glass windows, cinema, comings news item,

conversation. Moreover, under this almost infinite diversity of forms, narrative is present in

every age, in every place, in every society; it begins with the very history of mankind and

there is nowhere is nor has been a people without narrative. All classes, all human groups,

have their narratives…caring nothing for the division between good and bad literature,

narrative is international, transhistorical, transcultural: it is simply there, like life itself

(Barthers 1977: 79 in Czarniawska 2004:1)

Essentially, narratives are diverse and malleable enough to be communicated through multiple

channels. They can be spoken out loud or transferred in various forms including multimedia.

Further, they are an indispensable part of us as humans because we are social beings who are

biologically programmed to always interconnect with others. Narratives have the capacity to

transcend international, historical and social borders in order to relay meaning. For the most

part, they come to us naturally.

Justification for integrating narratives into the study

Firstly, breast cancer researchers support a narrative style for the exchange of cancer

information (Kreuter et al. 2007; Frisby 2002; Bock 2013). They maintain that they are a potent

research tool to employ, particularly with female respondents from communities with strong

oral histories (Friedman and Hoffman-Goetz 2007). They typically respond better to

information delivered in this manner, as it is less intimidating (Friedman and Hoffman-Goetz

2007). From this I would infer that because conversation is an activity most human beings

engage in, respondents prefer it because it is an uncomplicated method for connecting with

others. It is less alienating and discriminatory than an alternative such as writing or some other

strategy that induces dread or a sense of inadequacy in self-conscious people.

Further, researchers believe that narratives are a compelling strategy for encouraging positive

behaviour changes (Kreuter et al. 2007; Friedman and Hoffman Goetz 2007). They assert that

“in many narratives, individuals may not be forewarned of the persuasive intent and thus may

not marshal their cognitive resources to defend against a potentially counterattitudinal

message” (Kreuter et al. 2007:224). This means that narratives are capable of mentally

disarming people and preventing them from feeling threatened, to the extent of creating

cognitive barriers to cancer related information.

Additionally, narratives (particularly those that are about illness) can be empowering for sick

people. Bock’s (2013) summation of them indicates that people who are coping with disease

are stripped of their dignity because of the constant scrutiny they experience from health

institutions and society at large. Therefore, by sharing their subjective recollections verbally,

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they experience validation and empowerment. They are presented with the opportunity to

fashion an alternative identity for themselves instead of merely being stigmatized as patients

(Bock 2013). During the conversations they become people of value, whose proficiency on the

subject matter illuminates its murkier aspects for the listeners.

Narrative Criticism

Social science research is generally dismissed as being the antithesis to legitimate scientific

inquiry (Flick 1998). This is due in part to how it privileges the subjective aspect of a research

problem. Further, it typically utilises qualitative mechanisms in order to produce and evaluate

the data (Flick 1998). Narratives fall into the qualitative category; therefore, they are not spared

the disregard. I now offer a brief rebuttal of some of the criticism towards them because I

thoroughly believe in their capacity to generate information that revolutionises our perceptions

of certain issues.

A common complaint against the usage of narratives in research is that they do not produce

“real knowledge”, only a “mere interpretation of it… [which is] not real (Munro Hendry 2010:

73). I disagree strongly with this view because narratives trigger the sharing of knowledge

directly from people as they have encountered it. Without them, we researchers would merely

speculate about how people perceive a specific issue and the degree to which it affects their

lives. Through narratives however, we are privileged with hearing this uncensored and in real

time. Very few tactics can guarantee that level of authenticity. Narratives gave me direct access

to breast cancer patient’s innermost trials and triumphs. As such, I could appreciate who they

genuinely were beneath the pretentious exteriors they wear in order not to elicit the reactions

that are reserved for the infirm. Therefore, the issue is not the narrative format itself, but

whether the researcher chooses to manipulate it somehow. Only then does the knowledge lose

its raw and reliable quality.

Secondly, narratives have been accused of being narcissistic because of the credence they give

to individual voices (Munro Hendry 2010). “Scientific enquiry on the other hand, is

characterized as hard, rational, and universal (Munro Hendry 2010: 73). Based on the

exchanges with the participants, I would argue that this view is misguided. Every research

endeavour begins with doubt irrespective of the methods that are utilised to study it (Terre

Blanche and Durrheim 1999). We embark on it in order to gain insight into a vague research

problem. The results that inquiry yields provide us with the clarity we need in that moment.

This is because research inquiry “ends” in the same manner in which it was begun, which is

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with doubt (Terre Blanche and Durrheim 1999). The process is never completely over because

typically there are anomalies and other unanticipated discoveries which necessitate further

probing into the issue. For instance, the narratives that were shared by this study’s participants

provided a glance into their lives as breast cancer patients. The findings were valuable, but not

conclusive. Therefore, in the future there may be a need to return to Kwa Zulu Natal to examine

some facet of their experiences further. It is my observation that a sample never completely

represents a whole, regardless of the technique we use to examine it. Therefore, the claims

about the narcissism behind narratives are incorrect.

The final critique against the use of narrative is also related to its perceived scientific’

inadequacy’. However, Munro Hendry (2010:76) counter that the totalitarianism of scientific

inquiry has shortcomings that narratives compensate for. They compel us researchers to

appreciate the “faith and compassion that humans need to grapple with the unknown… [in so

doing], researchers can expand understandings of the complex ways in which humans

understand truth, reality, and give it meaning” (2010:76). As the findings will demonstrate,

human experiences are multifaceted, nonconformist and uncontainable. It is impossible to

capture and measure levels of fear and faith in a laboratory for instance. However, when people

tell us their stories, we are made aware of this. Further, when dealing with volatile

circumstances such as disease, the coping mechanisms that are critical to surviving it are not

available in tightly controlled, scientific environments. They are revealed through narratives.

Further in the study the role of what I am terming human “immeasurables” such as faith and

compassion, will be discussed. In sum, while the criticisms of narratives are numerous, the

ones mentioned above were the most relevant to this study. I now examine several grand cancer

narratives.

Eclectic Breast Cancer Narrative Patterns

Throughout the dissertation I have transiently referred to the monotonous pattern that highly

publicized breast cancer stories seem to take. I have alluded to how each one is packaged and

presented to the world. The literature indicates that there may be tacit rebuke towards breast

cancer stories that deviate from the path that researchers and the global marketing industry

have meticulously mapped out for patients. However due to this study’s focus on capturing the

authentic experiences of people who live with breast cancer, it was important not to replicate

these older “grand [breast cancer] narratives” ((Block and Weatherford 2013). Below I share

several of them. It is hoped that further in the dissertation the reader can recognise the

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differences between them and the actual experiences of Zulu breast cancer patients.

Importantly, “the world is too complex for grand narratives to provide any sense of legitimacy

for explaining the realities of individuals existing in a digitized and global society” (Block and

Weatherford 2013: 500). Therefore, it is vital for us to understand that people’s experiences of

disease cannot be niftily compartmentalised.

The ‘villain versus the victor’ narrative

The bulk of the material that is published by marketers on behalf of breast cancer adheres to

the following pattern: cancer is the metaphorical villain that invades the body of a heroic

woman (de Boer and Slatman 2014; Goldenberg 2010). She resolves to fight it valiantly

through chemotherapy and with the support of her loyal aides who are typically friends and

family (Goldenberg 2010). In the event that the cancer goes into remission, she has then won

the ‘battle’ against her foe and is considered a ‘survivor’ (de Boer and Slatman 2014;

Goldenberg 2010). However, if the cancer reaches a stage of palliative care until she passes,

she is then said to have lost the ‘battle’ (Goldenberg 2010). This standard narrative of the breast

cancer experience is typically received with good will from a global public that never questions

whether it is representative of all patients. However, the stories that are written by actual breast

cancer survivors strongly digress from the pattern I describe above. They are known as

“counternarratives” since they endeavour to “offer alternate perspective on breast cancer in the

public sphere; moreover… [they also do] …a kind of cultural work as …[they dislodge] the

power of mainstream breast cancer culture and its dominant stories of the disease” (Nielsen

2014: 98). Importantly, such accounts are powerful in that they “are exactly the kind of tools

needed to repair damage enacted through oppressive power systems, and, in this instance,

mainstream breast cancer culture, with its prescriptive and didactic stories, can be understood

as an oppressive power structure” (Nielsen 2014:98). The story that follows is a prime example

of a counter-narrative for reasons that will be supported.

The ‘healthy lifestyle’ narrative

In 2001, Barbara Ehrenreich wrote a thought provoking piece called “Welcome to Cancerland:

A mammogram leads to a cult of pink kitsch” (Ehrenreich 2001). To date, it is considered by

many as a deeply evocative yet realistic account of a breast cancer patient’s journey. Her work

is memorable because it deviates from the conventional buoyant cancer narrative. By contrast,

it is a sobering glimpse into the overwhelming and frightening world of breast cancer. She

begins by chronicling the day of her diagnosis. For Ehrenreich (2001:44), what began as a

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routine breast examination turned into an “induction into ‘Cancerland”. Like the rest of her

cancer journey, her positive diagnosis challenges everything the experts tell us about cancer

and factors which heighten our susceptibility to developing it. “Stress, poor diet, negative

thinking and lack of exercise are widely thought to cause cancer. Laughter, positive thinking

and exercise are presumably the antidote” (Goldenberg 2010:145). Ehrenreich adhered to all

these recommendations, yet, they did not immunise her against the disease. While reminiscing

on the irony of this, she said the following:

“I have no known risk factors, no breast cancer in the family, had my babies relatively young

and nursed them both. I eat right, drink sparingly, work out and doesn’t that count for

something?” (Ehrenreich 2001:43). Essentially what she is telling us is that there are instances

where women develop cancer even when they lead positive lifestyles and have no family

history of the disease. The messages circulated through the media encourage women to be

almost maniacal about breast examinations and other behaviours that limit the probability of

developing the disease. Therefore, it is heartening to be informed that sometimes cancer

develops inexplicably. In this way, women do not have to live a life of self-blame for not being

vigilant about breast self-examinations, eating healthily or inheriting bad genes.

The “naïve patient’ narrative

Another common theme in breast cancer narratives is the needy victim role that cancer patients

feel they must enact for their physicians (Bock 2013). Their actual accounts of their experiences

with them reveal the wearisome performances they need to deliver to avoid intimidating

medical professionals and compromising the quality of the healthcare they receive. One

narrator surmised this unspoken need to appease as follows: “I have learned -through trial and

error- to perform in the clinic for doctors in a way that signifies ‘good patient’-as in agreeable,

trustworthy and compliant, rather than ‘bad patient’-as in difficult, negligent and time-

consuming” (Nielsen 2014: 102). This “performed patienthood” (Nielsen 2014:102) guarantees

that at the least they are drip-fed recycled information about their condition as opposed to not

receiving any at all. The popular misconception around this trend, is that patients are being

supported by professionals whose medical expertise will ensure that their “journey” is

triumphant. In actual fact, they are adhering to an established yet dysfunctional pattern of

communicative subservience. However, it is framed in a positive manner in order to align it

with the dominant jovial narratives. In sum, the discussion above indicates that while cancer

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narratives may share certain similarities such as fear and pain, they are not the same. It also

suggests that a narrative approach is superior in that it captures these distinctions.

Research Paradigm

In my selection of the paradigm on which to embed the study, I was conscious of Michael

Quinn Patton’s recommendation that the choice needs to accommodate a specific “worldview,

a general perspective, a way of breaking down the complexity of the real world” (1980:37).

Since the study concerns itself with understanding the views of a particular community and the

intricacies around that, a qualitative approach seemed most appropriate. As a researcher within

the social sciences, it could be presumed that the qualitative route would be a foregone

preference. After all, unlike a quantitative one that concerns itself primarily with calculating

and measuring the interaction of phenomena, it lends itself to “description, analysis and

interpretation” (Wolcott 1994: 9). The more acquainted I became with a qualitative research

approach, the more I recognised its benefits:

Firstly, as a researcher, one becomes privy to “fluid definitions of a situation created by human

interaction” (Neuman 2011:118). Throughout the dissertation I have made copious references

to how Black female breast cancer patients are typically spoken for by foreigners to their racial,

cultural, class and occasionally gender group. The sentiments on their condition are presented

in computable and sterile terms that eradicate their significance. In fact, my summation of the

global scholarship on breast cancer in Black communities, is merely that it is prevalent. Further,

it emphasises the fact that Black women’s ineptitude to combat it is due to the Third World’s

economic and knowledge deficits. Researchers seldom probe this group for substantial insight

into the reality of living with breast cancer. However, the qualitative approach allowed the

participants to introduce a new dimension to the stagnant narratives that allegedly apply to all

Black cancer patients. The possibility that these narratives could be archaic and inapplicable to

them was previously unconsidered. Fortunately, working within the confines of the qualitative

paradigm allowed me to discontinue this pattern.

Secondly, a qualitative research approach honours human nature by recognising that people are

“social beings who create meaning and who constantly make sense of their worlds” (Newman

2011: 118). This is an important attribute especially due to the participants’ history as human

objects that were either acted for or upon. As Black females they have always been relegated

to positions of barefaced inferiority (Green 2002; MacDonald 2009). However, qualitative

methods create a space where their voices are heeded, and their insights are valued. Unlike a

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quantitative approach where the volume of information is often a prerequisite for its

significance, a qualitative one makes no such demands (Flick 1998). Every participant’s unique

interpretation of the world is meaningful and capable of enhancing our knowledge of breast

cancer.

Thirdly, adopting a qualitative approach to research enhances empathy (Quinn-Patton 1980).

This refers to the capability to “take and understand the stance, position, feelings, experiences

and worldviews of others” (Quinn Patton 1980: 56). Had I been in a science laboratory with no

contact with people, I would be under no obligation to appreciate their circumstances at an

emotional level. However, with a qualitative approach, being empathetic is mandatory to

making sense of the participants’ position. In fact, neglecting to do so would be a disservice

not only to them, but the entire practice of research inquiry. In my case, it would be more

accurate to say that I demonstrated “empathetic neutrality” where I was receptive to the

participant’s vulnerability and honesty but logical as I made deductions from their experiences

(Quinn Patton 1980:58).

From the passage above it can be gathered that in my usage of qualitative research methods, I

adopted an interpretive stance (Cresswell 2007). I am confident that this was a wise decision

because:

interpretive positions provide a pervasive lens or perspective on all aspects of a qualitative

research project [because]the participants in these interpretative projects represent

underrepresented or marginalized groups, whether those differences take the form of gender,

race, class, religion, sexuality, and geography or some intersection of these differences. The

problems and the research questions explored aim to understand…the conditions that serve

to disadvantage and exclude individuals or cultures, such as hierarchy, hegemony, racism,

sexism, unequal power relations, identity, or inequities in our society (Cresswell 2007: 24)

Every chapter of this study has highlighted a social structure, cultural norm, historical

occurrence or gender-based stereotype that acts to marginalise women. Thus far, it has been a

rather retrospective examination of how these forces render them so. The foundations are

constructed with older scholarly sources that graze only the surface of these issues. However,

by utilising an interpretive lens, we can get a present-day account of the effects of these factors

on the women.

Research Site

In the first chapter I briefly mentioned that the interviews were conducted at the Inkosi Albert

Luthuli Central Hospital (IALCH). It is situated in Cato Manor, Durban, Kwa Zulu Natal. The

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hospital was established in 2002 and is considered as one of the most technologically advanced

facilities in South Africa.

Figure D: Frontal View of the Inkosi Albert Luthuli Central Hospital

During his speech13 at the opening of the hospital, President Jacob Zuma revealed its cultural

background: it was named after Nobel Peace Prize winner Inkosi Albert Luthuli, whom Zuma

described as “one of the most outstanding leaders ever produced by this country, a profound

thinker, a bold and courageous fighter for the downtrodden, and a statesman” (Zuma 2002:1).

Further, the institution is an academic facility that trains medical students into skilled doctors

who can deliver quality healthcare to the region’s sick people. The hospital works through a

referral system where patients from across KZN are transferred to it. This point is important to

grasp because while my interactions with the participants occurred at IALCH, their experiences

are not confined to it. Typically, they visit district clinics and hospitals before being referred to

IALCH. Therefore, their narratives should be considered as an indication of the treatment they

receive across KZN’s healthcare facilities. They are not an exclusive expose of IALCH and its

staff members. Breast cancer patients are transferred there simply because of IALCH’s

technological sophistication. I chose to conduct the interviews there because it offered a readily

available sample of participants who met the study’s criteria. Secondly, I respected its

13 President JG Zuma’s speech is available in its entirety at: http://m.polity.org.za/article/zuma-opening-of-inkosi-albert-

luthuli-central-hospital-2002-11-22 Accessed: 30 March 2016

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commitment to abiding by the tenets that Inkosi Albert Luthuli’s reportedly adhered to while

he was alive. According to president Zuma (2002:1):

Inkosi Luthuli was uncompromising in his stance against racism, tribalism and sectional

exclusiveness. He believed in and fought for the oppressed people of South Africa regardless

of colour or creed. A staunch anti-imperialist and anti-colonialist, he was respected and

admired by democrats and anti-apartheid formations throughout the world. Inkosi Luthuli

genuinely and sincerely believed in the well-being, happiness and dignity of all human

beings

Further in the study, the narratives will reveal whether the treatment cancer patients receive is

in accordance with Luthuli’s values.

Sampling Design

The study’s participants we selected purposefully (Terre Blanche and Durrheim 1999; Mack et

al. 2005). In order to qualify for inclusion, the main requirements were that they be female,

with breast cancer and identify themselves as Zulu. By that I mean they needed to speak the

language and be familiar with the Zulu cultural environment and practices. Some participants

had one Zulu parent and one from another Black ethnic group. Yet they considered themselves

as fully Zulu. I included them in the study because I was not inclined to challenge their self-

concept. In terms of age, my primary concern was that they be legally consenting adults. As

such, their ages ranged from 22 to 82 years old. In hindsight, the choice to be flexible about

the age group was a wise one as I was able to gauge how a relatively young woman and a

mature one experience breast cancer.

The Interviewing Process

The first cluster of interviews were conducted in June 2016. With the assistance of the nursing

staff that was on duty, any consenting breast cancer patient was welcome to converse with me

prior to their chemotherapy session. The nurses improvised by converting a hospital room into

a designated interview area. They then explained the purpose of my presence in the ward and

asked for volunteers. The reasons for the patients’ willingness to participate are still unclear.

Perhaps they obliged in order to alleviate the monotony of sitting still for many hours on the

hospital bench. Regardless, I was not able to interview the anticipated number of patients due

to time constraints. I had resolved to interview thirty women. However, I only managed to

speak to fifteen.

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On my second trip to the hospital in September 2017, I decided to interview until saturation

(Mack et al. 2005). However, in order to avoid a repetition of the previous year’s

disappointment, I brought reinforcements. Prior to my 2017 arrival at the research site, I had

retained the services of Ms. Pumla Mkhiva who is a professional research assistant. Mkhiva

had over 25 years of experience in research, where she occupied various positions such as a

community mobiliser. She had worked primarily for the University of Kwa Zulu Natal, but

intermittently outsourced her expertise to various non-profit organisations in KZN. Mkhiva

also had vast experience as a liaison person between international donor organisations and the

opinion leaders of local communities. Therefore, I hired her with the understanding that she

would utilise her research skills and natural charisma to establish a rapport with the participants

(Flick 1998). During their chemotherapy visits to the hospital, some of the participants had

previously been exposed to researchers without necessarily engaging with them. Therefore,

Mkhiva’s foremost task was to furnish them with all the details of this study. She explained

who she and I were, the study’s objectives and most importantly, she impressed its voluntary

nature upon them.

Sister Seme, who was the manager of the breast cancer ward had been informed about our

second arrival in advance. She then verified that we had printed and signed copies of the

relevant documents such as permission letters from the provincial department of health, the

officials at the IALCH, the incentives for the participants and most importantly, informed

consent letters in both Zulu and English.

Afterwards, Sister Seme asked her subordinates to once again convert a hospital room into an

interview room for the day. My research assistant and I had brought a laptop, a digital recorder

and our cell phones to record the proceedings. I utilised all these devices to capture our

exchanges. However, at no point did the laptop camera focus on the participants faces. This

was done to protect their privacy, because although many of them were eager to be recorded,

past research experiences taught me that people react uncharacteristically when they know they

are being recorded (Flick 1998). I was wary that their subconscious reaction would compromise

the authenticity of our interaction. Therefore, the laptop camera recorded only our voices and

the hospital room.

I must emphasise the fact that although the selection of the participants from the hospital

benches was random, when they eventually entered the interview room they were fully

prepared. Ms. Mkhiva had thoroughly prepared them to a point where their decision to

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participate was a fully informed one. In fact, when we began speaking, many of them were

excited as they felt as if they were performing a benevolent act that would aid other breast

cancer patients in the future. As soon as they entered the room, we were on a first name basis

and our conversation that were guided by an interview schedule, commenced immediately

after.

I must stress that the duration of each interview was sufficient for my research purposes. It

must be borne in mind that my study is not an ethnographic one. It was not initiated with the

intention of excavating one or two seemingly indisputable truths that would be pored over until

the end of the dissertation. Instead, the goal was to reveal as many of the issues that are

synonymous with the breast cancer experience as possible. These insights can them be

examined individually after the doctoral experience. Hopefully at that stage there will be

enough resources to resolve them. Therefore, the duration of each interview did not

compromise the quality of the study because each highlighted issue was considered a gem that

would be interrogated further in the future. Further, at doctoral level the objective is originality.

The findings chapter will reveal some previously undisclosed information. With that in mind,

I maintain that the length of the interviews did not affect the profundity that is required from a

doctoral project.

Furthermore, despite their readiness to talk, the participants were undergoing the emotional

upheavals of their illness while the interviews were conducted. Thus, it was imperative that I

be sensitive to that and not be too forceful. There were patients who could only be interviewed

for a short while before being overcome with emotion. It would have been unethical of me to

barricade my way through these emotional boundaries in the quest for information.

It should also be noted that as Zulu woman who has spent 26 of her 29 years living in Kwa

Zulu Natal, I was acquainted enough with the socio-cultural context to immediately grasp every

point that the participants made. If the Zulu environment was alien to me, then that may have

delayed us from having meaningful exchanges. However, I am endogenous to KZN.

Furthermore, in Chapter 1 I mentioned that a family member’s breast health complications

partially inspired this study. This exposure to breast cancer and all that it comprises, is indelibly

emblazoned in my memory. There were patients whose journey was similar to what I had

witnessed in my relative. In this way, I had a vivid point of reference to draw from as I listened

to them. This contextual understanding significantly accelerated the process of knowledge

exchange.

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At the end of each interview each participant received a breast cancer themed hamper that

contained body care products. What was striking about this conclusion to our interviews is the

fact that several of the participants attempted to pay me for the hampers. They were fully aware

that I had purchased them as an incentive to thank them for their time. Therefore, it was an

exceptionally poignant display of Ubuntu to witness people who choose to share their meagre

earnings instead of feeling entitled (Samkange and Samkange 1980; Cornell and van Marle

2015). I interpreted their actions as their unspoken way of conveying gratitude at my

enthusiasm to hear, see and hopefully help them someday. It also assured me that I had not

succumbed to the exploitative researcher stereotype (Cornwall 2008).

Participant Observation and Field Notes

As stated previously, I visited the research site two times between 2016 and 2017 respectively.

I ensured that I arrived at eight in the morning and left the premises at four in the afternoon.

On both occasions I was careful to observe the participants’ non-verbal communication and

the intriguing hospital setting. These observations were recorded as field notes (Spradley 1980;

Bryman 1980). I consider the field notes to be a lesser data collection method because my

personal assessments are not the focal point of the dissertation. The interviews are far more

important because they are a reflection of the sentiments of the interest group. The field notes

merely supplemented the interviews and helped me to clarify my thoughts so that my final

analysis could be sophisticated. The table below depicts the elements that a researcher must be

mindful of during their note-taking:

1. Space The physical place or places

2. Actor The people involved

3. Activity A set of related acts that people do

4. Object The physical things that are present

5. Act Single Actions that people do

6. Event A set of related activities that people carry

out

7. Time The sequencing that takes place over time

8. Goal The things people are trying to accomplish

9. Feelings The emotions felt and expressed

Table A: Guidelines on Field Note Taking (Adapted from Spradley 1980: 78)

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As aforementioned, the interviews yielded several hours of captivating stories. However, it was

important to convey that my participants had my undivided attention. They needed to know

that I was fully present and engaged while they spoke. Therefore, it was impossible to create

in-depth notes during the interview sessions. However, each evening, I would recollect the

entire proceedings for the day. The quick notes I had made during the interviews prodded my

memory. I would then transfer those recollections onto my laptop. I ensured that every

occurrence, irrespective of magnitude was captured. From the salacious whispers that were

overheard while the participants waited on the benches, to the harrowing realities that they

shared during our interviews-it was all documented as field notes. All this material was then

transcribed from Zulu to English by myself and a professional transcriber who is a native Zulu

speaker.

Ethical Considerations: Participant Privacy and Data Storage

Breast cancer is a personal health issue that can be challenging to discuss. Therefore, gathering

the data in a manner that does not infringe on the participants rights was imperative. As part of

honouring those rights, I obtained gatekeeper letters from the relevant parties. These gave me

permission to interact with the participants. Further, their autonomy was protected through the

use of an informed consent form. I had drafted it in both English and Zulu, so participants

could choose their preferred form to read and then sign. It specified (in a language that

participants understood) the nature and purpose of the research, my identity and institutional

association contact details. Importantly, it emphasised that participation was voluntary, and

that anonymity would be ensured. Further, the participants were free to withdraw from the

research study at any time without any undesirable consequences to themselves. The informed

consent form clearly stated that pseudonyms would be used by participants. In fact, I assigned

numbers to every narrative. For instance, the first participant is referred to as “participant 1”

and the last participant is “participant 30”. All the research data and instruments (recordings,

interview transcripts and so forth) will be handed to the supervisor for safe storage at the

University of Johannesburg for a period of up to 5 years. Thereafter, the data will be safely

disposed of according to institutional norms and regulations.

Limitations

Budget

Financial challenges were another notable constraint to the study. At the onset of the project I

had secured funds from the National Institute for the Humanities and Social Sciences (NIHSS)

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who are a reputable sponsor for South African doctoral candidates. However, due to unforeseen

administrative challenges, there were delays in the release of the monies for the 2016 and 2017

years respectively. As a result, the latter portion of this project was self-funded.

Scheduling conflicts

During the latter part of my studies I was employed at the University of Johannesburg.

However, the hospital where the study participants were based is located in Durban Kwa Zulu

Natal (KZN), which is in a different region of the country. Reaching it required 14 hours to

and fro. Therefore, adjusting the work schedule in order not to neglect my research

commitments was challenging. However, I managed to negotiate through the logistical

constraints. Overall, I successfully circumvented all the challenges that arose.

Validity & Reliability of the study

According to Golafshani (2003) where qualitative research is concerned, validity and reliability

are not considered as concepts that need to be accounted for separately. Both terms refer to a

study’s integrity. Unlike quantitative methods that base their assessment of reliability and

validity on the consistency of their test-re-test results, qualitative ones base theirs on the “effort

and ability of the researcher” (Golafshani 2003: 600). Therefore, I committed myself to

ensuring that the trustworthiness of my work remained unquestionable by using appropriate

research instruments, embedding it within the right theoretical framework and conducting it in

an ethical manner. To this end, participants were furnished with informed consent letters that

were written in both English and isiZulu which is their mother tongue. Processes such as

gaining gatekeeper permission from the relevant parties and ethical approval were followed

meticulously. I strongly believe that taking these steps enhanced its academic soundness

(Golafshani 2003).

A Reflexivity Disclosure

Breast cancer is a delicate subject that inevitably evokes emotion from patients and onlookers

alike. In this instance, I dedicated approximately three years towards pedantically examining it

at doctoral level. This study is qualitative, which meant that as the researcher, I was the

instrument (Pezalla et al. 2012). The narratives belonged to the participants, but I was the vessel

that captured them. Essentially, I became a custodian of their most intimate experiences. It is

impossible to be a detached researcher while witnessing searing emotional vulnerability.

Therefore, I was forced to adopt dual roles. Inwardly I remained a social scientist who was

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critically processing even the most seemingly miniscule detail of our interactions. Externally,

I became a compassionate listener that they could converse with unreservedly. This consistent

exposure may have led to an emotional envelopment that is more intense than that of a

bystander. Therefore, there is an ethical obligation on my part to have a brief discussion on

reflexivity.

According to Roni Berger (2013), having an awareness of one’s subjectivities in the research

field is at the core of self-reflexivity. In qualitative research it is critical for scholars to have

“continual internal dialogue and critical self-evaluation of… [their] positionality as well as

active acknowledgement and explicit recognition that this position may affect the research

process and the outcome” (Berger 2013: 220). One needs to constantly monitor oneself in

order to avoid compromising the authenticity of their participant’s experiences. Essentially,

self-reflexivity refers to the “turning of the researchers lens back to oneself to recognise and

take responsibility for one’s own situatedness within the research and the effect that it may

have on the setting and the people being studied, questions being asked, data being collected

and its interpretation (Berger 2013: 220). As researchers we select a topic of study because it

has somehow piqued our interest. When we eventually explore it at doctoral level, we have

formulated prejudgments and probable outcomes. However, when a researcher chooses self-

reflexivity, they actively acknowledge the existence of these dynamics. As a result, of the

frequent self- evaluation, they are less likely to fully saturate into the final conclusions.

Possible effects of the researcher’s position

Berger (2013) outlines three ways in which a researcher’s position can affect their study.

Firstly, it can impact the degree of “access” that he or she has to their participant, as they will

only engage with someone they perceive as empathetic towards them. Subconsciously I was

aware of this. Therefore, I went to great lengths to convey my compassion without being

condescending. I took measures that ensured that there would be no emotional barriers between

us. It was vital that they experienced me as being both a competent professional and a relatable

young woman. Past research experiences taught me that subtle details such as an overly

sophisticated dress code can cause participants to be aloof and guarded. Therefore aesthetically,

my appearance was completely disarming. I presented myself as a casually dressed, regular

woman that they could have a memorable conversation with. Further, researchers have often

been accused of extracting knowledge from their participants and then vanishing completely

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from the setting (Cornwall 2008). Thus, during our exchanges, I communicated that there could

be as much reciprocity as they required.

Secondly, Berger (2013) states that the researcher’s position needs to be managed carefully as

it determines the amount and quality of the information that participants divulge. He highlights

how females are more likely to converse freely with other women, as opposed to men for

instance (Berger 2013). Past research experiences taught me this invaluable lesson. As result I

knew that the participants would only be less reticent if they perceived us as having more

similarities than differences. Fortunately, at the onset of our dialogues it was apparent that we

were more alike than different. For instance, I was female, Black, Zulu, originally from the

rural areas before moving to a communal settlement. Further, I had breasts which meant that

I was not exempt from developing cancer. They were comforted by the fact that hypothetically,

their agonising reality could be mine as well. Importantly, I was closely related to someone

who had experienced breast complications. Therefore, the turmoil of the diagnosis was not

foreign to me or mere data that I had acquired from textbooks. My knowledge of it went beyond

the theoretical level because I had lived through it vicariously. Further, while I may have been

more scholastically advanced than they were, they possessed the kind of wisdom that comes

from living courageously on a daily basis. Thus, they were more learned than me in that regard.

For that reason, we were equals in the process of knowledge exchange.

“Finally, the worldview and background of the researchers affects the way in which he or she

constructs the world, uses language, poses questions and chooses the lens for filtering the

information gathered from participants and making meaning of it, and thus may shape the

findings and conclusions of the study” (Berger 2013: 220). After my experience in the research

field, I can attest to the accuracy of this assertion. Like the study participants, I too am from a

Zulu background. As a result, I inherently knew that certain cultural prerequisites needed to be

honoured before significant exchanges between people from different age groups occurred. For

instance, it is imperative that we practice ukuhlonipha (respect) in general, but particularly

when interacting with our elders (Rudwick and Shange 2009). This must be evident even in

our use of language. Zulu elders typically express themselves through elaborate metaphors as

a sign of deference for the next person. Therefore, I needed to construct and pose my questions

in the rich language that they are accustomed to. Additionally, during the transcription process

I needed to help translate these eloquent chronicles according to academic conventions, without

diminishing their flair. Fortunately, my Zulu background adequately prepared me for this task.

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Strengths of self-reflexivity

The literature indicates that there is an ongoing debate about the merits of self-reflexivity in

qualitative research (Finlay 2002). Some scholars dismiss it as a self-indulgent and superfluous

exercise (Latour 1988). Others consider it a cornerstone of every qualitative research endeavour

(Maxey 1999; Pezalla et al. 2012). I fall into the latter category because self-reflexivity

enhanced this study in the following ways:

It forced me to cast aside the intellectual assumptions I had created prior to entering the research

field. The literature does not portray African breast cancer patients favourably (Pillay 2002).

Therefore, before the data collection phase, I had considered them as being a docile group who

were impervious to breast cancer due to illiteracy. I had envisioned them as being apathetic to

the relegation to the fringes of the Kwa Zulu Natal province, where they were submerged in

superstition and antiquated practices. The probability that they could consider healthcare a

priority was non-existent in my mind. However, after careful reflection, it became apparent

that I was projecting fabricated certainties prematurely. Had I not engaged in this self-

evaluation before the encounters with the participants, I would have devalued their experiences

and this project would have been pointless.

Further, through self-reflexivity I realised that there are no absolute truths despite what the

body of literature may indicate (Maxey 1999). Knowledge production is continually in flux.

Information that was considered accurate a decade ago, may no longer be valid currently. This

is particularly true for a health issue that is being researched ceaselessly across the globe. New

facts emerge constantly. The patients and communities embrace them, or they develop new

coping mechanisms and so forth. Had I not come to this realisation through introspection, I

would have continued to operate from the delusion of there being immutable facts.

Self-reflexivity “reminds us to explore how conversation or texts affects us and to reflect on

what we bring to it ourselves. In particular…unconscious needs” (Finlay 2002:217). As a

researcher one is constantly plagued by the guilt of possibly overstepping the participants’

boundaries or unintentionally manipulating them. However, the reflecting that occurred before

and after each conversation aided me with maintaining the mutually beneficial facet of our

interactions. With each recalibration I realised that I brought theoretical knowledge to each

encounter. I also provided the participants with an opportunity to vent to a genuinely concerned

individual. In a hospital environment that is swarming with professionals who are consumed

with attending to patients and patients who are overwhelmed by their own challenges, a

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compassionate ear is not always available. I provided temporary reprieve from this and

attempted to validate them to the best of my ability despite the constraints. Our encounters

were concerned with more than uncovering their challenges. They were geared towards

celebrating all the personal victories that they amassed during their cancer journey. I realised

that many of their unmet needs were emotional. Conversely, my unmet need was to be of

service to them. This degree of clarity would not have been possible without constant self-

appraisal.

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Chapter Five

Findings and Discussion

This chapter assembles and comprehensively interrogates the most pertinent information that

was extracted from the participants’ narratives. The dialogues generated several hours of

enthralling stories that were relayed with the utmost candour. However, only the most pertinent

aspects will be discussed. These include their perspectives of breast cancer, the mutable

significance of Zulu culture, treatment options and awareness of the cancer commodification

phenomenon. To the best of my knowledge this is the first study conducted with Zulu female

breast cancer patients in over a decade. Therefore, this chapter highlights the information that

corroborates existing scholarly findings. Newer discoveries that contradict older research

conclusions will also be presented. It is also important to reiterate that the narratives are not

intended to vilify the Inkosi Albert Luthuli Central Hospital (IALCH), its staff members, the

quality of their health services or its affiliates. The principal objective is to illuminate the breast

cancer issue as vividly as possible. It is my deepest hope that these findings will be beneficial

to health communication practitioners and ordinary civilians alike.

General Perceptions of and Reactions to Umdlavuza Wamabele (Breast Cancer)

The conversations between the participants and I revealed that the initial perceptions of and

reactions to breast cancer were diverse. If they were to be captured on a continuum, they would

have ranged from moderately optimistic to intensely cataclysmic. What was astonishing is that

these variations were related to the participants’ ages. The younger women (aged 34 and lower)

perceived breast cancer pessimistically. The older group shared the negative sentiments

somewhat, yet they were more balanced in their overview of it. Below are three excerpts that

illustrate these vastly contrasting reactions:

D14: Was there anything else that you knew about cancer?

P15: I knew that I was going to die but it just wouldn’t be now. There was another sister

whose surname was Mkhize and she had cancer. But it wasn’t like she was my sister. She

was just a friend from Umlazi. So, we kept seeing her and then she was told to put her

affairs in order because she was going to ‘go away’ [die]. So, then I told myself that cancer

does that you see? But she lived for a long time. Even now I’m telling myself that I’m still

going to live, but of course in the end I will go. Even if it is cancer, you see? (Participant

1, aged 68).

14 D: Dudu Zwane (the researcher) 15 P: Participant (anonymous)

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The excerpt reveals that the participant is aware of the severity and possible mortality of breast

cancer. However, after witnessing another woman surviving for longer than anticipated, she is

reassured that the same can happen for her. She is aware that death is inevitable. However, she

recognises that cancer is not the sole cause of death in the world. Therefore, she is affirming

life to herself despite the precariousness of living with a chronic illness. Another participant

responded as follows:

P: You lose your dignity and you are even afraid to go outside. It is the most difficult illness

ever and I always ask myself what I did badly before God to deserve such a punishment

because it is really a punishment. It’s like you’ve done a big sin and the worst part of it is

that you know that you’ll die at the end after suffering from pain, stress, your clothes don’t

fit you anymore, you are ugly and, in the end, you know that you’ll die. It’s like you would

rather die immediately and know that it is finished (Participant 13, age 30).

Evidently this participant perceived breast cancer as a death sentence. In fact, her response

suggests that a quick death is preferable to living with breast cancer. It is disconcerting to note

that she construes an enigmatic and opportunistic affliction as “punishment” from a higher

power (Koffman et al. 2013). Further, the fact that she is harbouring guilt despite not having

committed a transgression, conveys how profoundly her logic has been distorted. Overall, it

can be surmised that she considers cancer as a burden that must be borne while awaiting

imminent death (Thorne and Murray 2000. By contrast, an older participant said the following:

P: Awu my child…. I accepted it. I don’t know…. you know what? Faith does something to

you. Faith does something to you my child because your faith… [pauses]. The Word says

we know that we will die. But how we will die, when we will die, why we will die, nobody

knows. That’s what I accepted. I didn’t have any issue, I don’t want to lie. I accepted it and

told myself that since I am 65, there is something that could affect me somehow. I didn’t

have a problem, I don’t want to lie (Participant 11, age 65).

The excerpt above indicates that the participant perceived breast cancer as a by-product of

aging. She had anticipated that her advanced age would result in her health deteriorating

somehow. Therefore, when she did become ill, she accepted it as the natural trajectory of life.

Her reference to death indicates an awareness of the severity of breast cancer. However, it

appears that she has a strong spiritual connection that helps her to maintain a positive outlook.

In sum, the first excerpt contradicts the frequent reports of total despondency amongst Black

breast cancer patients (Forte 1995; Taylor 2001; Sadler 2007). It indicates that Black women

are capable of transcending the trauma of a breast cancer diagnosis. They can maintain a

positive attitude despite being critically ill, even during their twilight years. Past research

classifies them as being unwavering fatalists (Forte 1995; Taylor 2001; Sadler 2007). However,

this particular participant deviates from the narrative of an eternally forlorn Black breast cancer

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patient. She embodies strength by demonstrating that she has the intellectual and emotional

resources that are needed to withstand the demands of living with cancer.

Superficially, it could be concluded that the second participant conforms to the aforementioned

despondency stereotype. However, I would disagree strongly with that view. Firstly, she is

thirty-eight years younger than the more buoyant participants. Therefore, she may not have had

the type of life experiences that cultivate composure when life becomes challenging. The first

participant’s response indicates that she has witnessed a fellow woman living and exceeding

her life expectancy after being diagnosed with cancer. Therefore, she had an inadvertent role

model. Her commitment to survival may have been strengthened by that.

The fact that we learn through observing others is irrefutable. It has been empirically tested

and verified (Bandura 1995; 2004). In fact, when we observe people who are similar to us

succeeding, our self-efficacy beliefs are enhanced (Bandura 1995; 2004). We begin to trust in

our capacity to do the same. The younger participant did not report the presence of a role model

who could help alter her mind-set. Therefore, consigning her to the fatalistic category would

be unfair. I would classify her reaction as normal given her isolation while she processed her

diagnosis.

Ukwamukela (Acceptance)

The notion of ukwamukela16 (acceptance) was a recurrent theme amongst the participants.

When asked about their attitude towards cancer several months after being diagnosed, they

summarised their path to acceptance thus:

P: I eventually accepted it without any problem. So I’m here today aware that anything

might happen. It’s like when you give birth for the first time and those who have been

through it scare you and tell you that giving birth is like this and like that. When you are

there, you find out that it is not as bad as they said it was and you just have your baby without

feeling those terrible pains. I also think that cancer treatment is the same as giving birth.

There are those painful moments for a short while and then they pass (Participant 6).

From the excerpt we can deduce that the participant may have initially heard appalling

information about cancer from people. The birth analogy suggests that she now perceives each

cancer diagnosis as laborious but unique for every woman. We can also infer that her personal

encounter with cancer is vastly different to what she may have been told. Thus, the awareness

16 Definition obtained from https://zu.oxforddictionaries.com/translate/isizulu-english/-amukela?locale=en Accessed on: 19 October 2017

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that her experience is not as gruesome as she had anticipated, may have helped her to reach a

state of complete ukwamukela (Isizulu Oxford Living Dictionaries 2017).

D: But cancer is deeply saddening.

P: Cancer is challenging. But it needs (ukwamukela) acceptance. It needs (ukwamukela)

acceptance (Participant 5).

From this brief extract we gather that the participant is cognisant of the hardship that comes

with a breast cancer diagnosis. However, her response indicates that acceptance as opposed to

a state of denial is a crucial step towards coping. Her emphasis on acceptance may suggest that

for her, a denial of what is, would be an additional burden to bear. Therefore, she chose to

accept her new reality. Overall both participants epitomise strength and hope. They appear to

have processed living with this disease rapidly but pragmatically. Their responses are another

resounding contradiction of the ‘fatalistic mentality’ narrative that is proliferated by First

World cancer researchers (Forte 1995; Taylor 2001; Sadler 2007). Fatalism connotes a resigned

mindset where the will to persevere is no longer there. However, these participants demonstrate

that intellectually and psychologically they are sound. Further, their decision to enact agency

by continuing to seek healthcare suggests that they have hope for complete healing (Freire

1990; Melkote and Steeves 2001).

Subtexts of the word “Umdlavuza”

A fascinating finding relates to the connotations that are attached to the word “umdlavuza”.

The extracts above indicated that some participants regard the disease with a sense of

foreboding. In extreme cases, they associate it with death. However, it is interesting to discover

that even the term “umdlavuza” elicits a reaction:

P: It is a deeply painful word. That word umdlavuza is painful. It’s painful to hear someone

say umdlavuza.

D: Really? Please tell me why?

P: It’s painful to hear someone say umdlavuza. When someone says umdlavuza, you tell

yourself that this thing is eating me every day. You just think there’s nothing left to who I

am. It’s painful for them to say it out of their mouth (Participant 10).

In Zulu, the word “ukudla” refers to food or the act of “eating” (Isizulu Oxford Living

Dictionaries 2017). Further, to “dlavuza” means to literally “tear into or apart” or to “devour”

(Isizulu Oxford Living Dictionaries 2017). Therefore, there is a high probability that the

etymological origins of “umdlavuza” can be traced back to these words. In the excerpt above,

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it is probably painful for the participant to hear it, as it may conjure up the image of the cancer

ravaging her internally. In addition to the physical damage, she imagined the disease

consuming the very essence of who she is. The experience of an illness gradually decimating

people from within despite their best efforts to treat it, may have been documented in the past.

However, it is the first time that a Zulu woman reports this association being triggered by a

word. Overall umdlavuza is one of a few words that luridly convey the internal transmutation

of a specific disease.

Strong while Weak: Early lessons in stoicism

At a logical level we can infer that receiving a positive breast cancer diagnosis is unsettling. It

would not be alarming to see the affected individual undergoing various stages of emotional

tumult before fully accepting it. However, I discovered that even the participants who reported

being distraught, forced themselves to adjust quickly. Their stories suggest that openly

wallowing in grief, while processing the diagnosis is socially unacceptable (McCool 2008;

Cooper and Mullin 2001). Their reactions suggested that it was imperative to project strength

even at their physical weakest. They did not explicitly state that displaying weakness was

improper. However, their narratives suggest that bravery is a deeply ingrained and staunchly

upheld belief in the Zulu community (Cooper and Mullin 2001). A poignant excerpt from a

participant illustrates this thus:

P: You know what? I grew up in the rural areas, where we had to farm. We had everything.

That’s why I say I should’ve been retired by now. At a certain time, we had to plough the

soil. If you were a girl, you knew that at a certain time you had to wake up. It’s not like our

grandchildren today who sleep. They wake up at 10. Now with that, how do you expect to

be healthy? My mother would never get up and sweep while I was sleeping. My mother

would never open the door and find me quietly sleeping. No my child. My mother would

never call my name and have me not answer….

My last-born child that I spoke about, also passed away. She was at the hospital with a

headache and she said Ma I would like you to come and see me. I would go and see her a

lot. So, when I got there the nurse said: “Ma, did you know that this child had died on

Sunday? I went to tell the doctor so that he could come and see her. When I brought the

doctor to her, she “was awake”. So that affected me seriously. I then went back to my child.

I said “Listen here Phindile, you are mine. When you are not mine, you are Gods. You were

given to me by God and I want you to yield to God’s will”. I said that while holding her. “I

want you to yield to God’s will”. Then my last words were “Goodbye my child, I will come

back to visit you”. Then I left. The next day my sister in law came in with the phone and

said “Phindile is no more”. I said, “she submitted to God’s will because the first time around

she may have been hesitating and saying [to God] “but my Mother…” So, we need to submit

to God’s will. If you look around you, how many people have died and left you wishing you

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could have gone with them? Acceptance is what is needed. Let us not make our children

sick (Participant 22, aged 65).

The first portion of the participant’s story indicates that she was conditioned to be strong during

childhood. The pride with which she recounts her physically rigorous upbringing demonstrates

that strength was held in high regard. The reference to being raised in the rural area suggests

that she is proud of being farm-strong and able to endure the demands of life in harsh

environments. From the reference to early rising, we gather that physical toil was another

widespread and highly valued practice in her community. Currently, she continues to conform

to the values that were inculcated into her.

The second portion is her recollection of her daughter’s passing. She had been ill and was

subsequently hospitalised. While the participant was at home, the daughter was allegedly

pronounced dead medically. However, when the participant arrived at the hospital, the daughter

was alive again. My interpretation of the participant’s reaction to the news is that she loved her

child deeply. However, she felt that the daughter’s awakening based on love for her as the

mother, was a defiance of God’s will. The participant probably believed that celebrating her

daughter’s ‘resurrection’ was tantamount to altering the natural progression of life and God’s

law. Therefore, she could not fully embrace it because she perceived it as connoting an inability

to mukela (accept), which is the ultimate weakness to her. In her mind, true courage was living

with her daughter only if it was ordained by God, hence her instruction to surrender to Him.

Further, for her, true strength was determination despite the prospect of pain due to losing a

loved one. The level-headed response to the daughter’s “second death”- that is the approval

she gives her for being stout enough to surrender- confirms how highly valued courage is to

her.

The narrative above illustrates the accuracy of a previous finding about the significance of

stoicism in the Zulu community (Cooper and Mullin 2001). Both researchers discovered that

any external display of vulnerability is silently condemned by this cultural group (Cooper and

Mullin 2001). If embracing the pain of life without a child is preferable to living with them

while harbouring guilt that you are cowardly for holding onto them- then that is a resounding

statement about the importance of strength. Below is another excerpt that demonstrates this:

D: Now that you are about to have the operation, who will come here with you, who will

support you on the day and so on? Are you bringing yourself to the hospital?

P: From home?

D: Yes.

P: I will do it by myself.

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D: So, you are going to leave home by yourself and come here, you’ll sleep alone, they

will operate on you and then you will go home by yourself after that?

P: I might at least call the child to come and fetch me. That is if I don’t have bus fare. But

if I do have it, I can walk by myself. I am not a cry baby- I am not a cry-baby. I am used to

doing everything by myself (Participant 26, aged 67).

From the excerpt we can gauge that demonstrating vulnerability or even asking for assistance

is a challenge for the participant. As a person who is living with a potentially fatal illness, it is

not unusual to require assistance. In fact, it is expected. However, the prospect of admitting

that she needs practical help after undergoing surgery appears abhorrent to her. In fact, her

determination to undergo the entire process alone, further indicates her reluctance to appear

weak. Further, the reference to being a “cry baby” indicates her fear of helplessness. This

particular participant was 67 years old, which suggests that the compulsion to portray strength

may have been inculcated many years ago. She and the aforementioned participant probably

belong to a generation where tenacity was emphasised incessantly. The excerpt also confirms

previous findings about women fearing vulnerability, even amongst their families (Remennick

2006). These findings indicate that women have an unspoken obligation to be strong during

times of immense hardship, lest their families disintegrate (Thorne and Murray 2000). They

occupy several roles within their families and are unquestionably the pillars that ensure that

these units do not collapse (Thorne and Murray 2000). Overall, this finding confirms that breast

cancer patients suffer silently, for fear of being burdensome (Remennick 2006; Thorne and

Murray 2000).

Prior Knowledge of Breast Cancer

The majority of the literature that was reviewed suggests that breast cancer unawareness is

partially responsible for late diagnosis (Meneses and Yarbro 2007; Matatiele and Van de

Heever 2008; Porter 2008; Wadler 2011; Opoku: 2012; Formenti et al. 2012). Therefore, it was

important to establish whether that was true for this particular group of participants. When

asked what they had known about breast cancer prior to being diagnosed, they responded as

follows:

P: I know it from TV

D: Do you know good things or bad things?

P: Bad things. I know that once it gets you, you need to wait for death. The father of my

child had throat cancer. My Lord, he used to smoke cigarettes. He would smoke one after

the other. So, he had cancer throat. In the end the hospital told him there was nothing they

could do for him and he must wait for the day of death. You see, waiting for the day of death

is very painful. When doctors tell you that they can’t help you any further, it’s very difficult

(Participant 16).

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D: But in the past-did you know how you can get breast cancer?

P: I don’t know. I don’t know…

D: Some say that if your mother had it or your grandmother, it’s hereditary…

P: My mother didn’t even have BP[blood pressure]. She didn’t have diabetes. She just

touched here [forehead], said it was painful and that was the end. But this is what confuses

me: why don’t doctors know how to cure it? It’s the only disease that defeats them. When

it gets into you, you have to go. If it spreads all over your body, forget it. You must wait for

the way home [death]. It makes me sad (Participant 18).

Both participants appear to have limited previous knowledge of breast cancer. Despite brief

exposure to it in the media and in a familial setting, they have a vague grasp of what it is. It is

encouraging to note some awareness that there is more than one type of cancer. However, that

optimism is eradicated by the realisation that they understand these variations only in the

broadest of terms. They do not understand breast cancer specifically which is imperative, as

that is what their bodies combat daily. In fact, the only breast cancer-related information that

they appeared to know with certainty is that it is incurable. However, this is incorrect as breast

cancer is curable, particularly in the early stages (Brinton et al. 2014).

The second participant’s remark about doctors’ being confounded by cancer on account of its

opacity is a fair one. There are numerous deadly diseases that are known to man. Typically,

even when there is no cure available, at the very least doctors have critical facts related to them

at their disposal. With HIV for instance, the various ways in which it can be contracted and

prevented are widely known (UNAIDS, 2010). Yet, cancer remains a perplexing subject

despite being one of the most globally prominent and thoroughly researched diseases

worldwide (Stefan et al.2013). If medical experts are mystified by this elusive illness, then

regular citizens cannot be blamed for their limited awareness either. Overall, both participants

demonstrated that the studies indicating a breast cancer knowledge deficit, were accurate

(Meneses and Yarbro 2007; Matatiele and Van den Heever 2008; Porter 2008; Opoku: 2012;

Formenti et al. 2012). Further, there appears to be a need for interventions that clarify popular

myths about the disease.

Breast Cancer Detection

Every participant reported that they suspected breast cancer after examining themselves. At

that point in time, they lacked the technical information on how to approach this activity

effectively. However, they were vigilant and highly attuned to abnormalities on their breasts.

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Therefore, their instincts guided their untrained self-examination attempts. Some of the women

narrated their detection experiences thus:

P: I found out in 2013. Is it 2013? Yes, I found out in 2013. You know that when you breast

feed it’s as if…it’s as if…

D: Your nipples crack?

P: No, they don’t crack. It is like…the milk is full?

D: Yes.

P: So that’s what I thought until my baby stopped feeding. After that-about one year from

that- I felt that there was an unusual lump. So, I decided to go to the clinic to tell them that

there is a lump that is unusual (Participant 26).

There was a lump, but I felt it when I was about to menstruate. You know the feeling of the

breast becoming firmer when you are about to menstruate, and the feeling would fade after

menstruation and yet it was continuing to grow. It became big and I went to the clinic and I

was referred to the hospital and they made their tests and kept on saying that they cannot

see it. I was asked to call again after 3 weeks (Participant 14).

Both excerpts indicate that the participants were perceptive to the general changes in their

bodies and even more so when these occurred in their breasts. Importantly, most breast cancer

experts and related publications highly recommend regular breast self-examinations (Women’s

Health Breast Cancer 2013; Fact Sheet Breast Cancer 2014). In fact, in South Africa CANSA

teaches women how to perform them correctly (Women’s Health Breast Cancer 2013; Fact

Sheet Breast Cancer 2014). The study participants may not have attended these classes and

consequently were not equipped with the technical skills. Despite this, they managed to execute

them with astonishing precision.

Most impressive of all however, is the immediate seeking of medical care after detection. Every

single participant’s narrative indicates that they did not neglect to do this. Many of them could

not afford private healthcare. Therefore, they consulted their local clinics. Their efforts are

commendable because countless studies emphasise the importance of swift medical

consultation upon detection of suspicious breast changes (Kruger and Apffelstaedt 2007;

Women’s Health Breast Cancer 2013; Fact Sheet Breast Cancer 2014). In fact, the Kwa Zulu

Natal Department of Health Breast Cancer Prevention and Control Policy 201717 that was

revised in June 2017, indicates that early detection interventions are a massive priority for the

organisation. They are committed to ensuring that women all over the Kwa Zulu Natal province

17 The latest version of this policy document is available on: www.health.gov.za/index.../2015-04-30-08-24-27?...breast-cancer-policy Date accessed: 19 October 2017

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are aware of how crucial early detection is to cancer prevention and treatment (Breast Cancer

Prevention and Control Policy 2017). All the participants did not have access to this policy nor

were they aware of its existence. However, they followed this recommendation by relying

solely on their intuition. Further, they sought medical advice of their volition. This negates

older findings which claim that Black women, particularly those from Africa, delay this step

(Frisby 2002; Matatiele and van de Heever 2008).

Navigating the path from Detection to Treatment

An appalling finding concerned the treacherous journey from self-detection of the cancer, to

the treatment phase. As mentioned above, the vast majority of breast cancer publications stress

the need for early detection (Kingham et al. 2013; Fact Sheet Breast Cancer 2014; Brinton et

al. 2014). Emphasising the importance of detection implies that exploring treatment options

will be an urgent undertaking. However, in the Kwa Zulu Natal region, this is not the case.

Every single participant that was interviewed encountered prolonged delays in the

commencement of treatment. In fact, even receiving a conclusive cancer diagnosis proved to

be an arduous process:

P: I started at the clinic in my community called Kwa Mbonambi. I think I went there for

almost 2 years. It [the breast] became black and it started leaking a white discharge here at

the tip. When I would wake up in the mornings I would have a white layer here at the tip.

Then the nipple turned inward. I went to a doctor and he said it was cancer. The problem is

that in order to receive treatment, the hospital would have to also confirm that it was cancer.

He wrote a letter for me. He was a private doctor and because I don’t have medical aid I

have to use the government hospital. They [the hospital] want their own proof that what the

doctor was saying is indeed the truth. So, they kept on taking samples, but the samples would

always reveal that there was nothing wrong. They kept giving me pills and because I wasn’t

in any pain, I would go there and sometimes I would just take the pills and not go. Then I

would notice that it wasn’t going away. So, I would go back and tell them ‘ayi bo, this isn’t

going away’. Eventually there was a nursing sister who said let’s see what it looks like. By

then it was very very black to the extent that I was even afraid to undress. It changes in such

a way that you begin to feel self-conscious in front of other people. So, she said let me write

you a letter to Ngwelezane [Hospital]. When I got to Ngwelezane they were shocked that I

had waited so long to come to them. I told them that I had not waited its only that I couldn’t

come to them without a letter. And if you do ask for a letter, they tell you that they can’t

give it to you without first trying to find out what is wrong with you for themselves. So,

there was all of that. (Participant 11)

From the extract we gather that the participant detected the cancer herself. She promptly visited

the clinic closest to her and did not receive assistance. This neglect continued for two years

until she decided to consult a private medical practitioner, who confirmed that she had breast

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cancer. However, due to what I assume are financial constraints, she could not afford further

private treatment and had to return to the clinic. Despite the confirmed cancer diagnosis, the

clinic’s medical personnel kept placating her concerns with a regular supply of undisclosed

pills. She did not know what the pills were for, but believing that they would help somehow,

she continued to consume them. At this stage she was not in physical pain. Therefore, she might

have assumed that the mysterious pills were probably curing the cancer. However, the concern

resurfaced when the outward appearance of the breast changed dramatically. She returned to

the clinic and they had to see the radical appearance before being convinced that her condition

warranted further medical attention. Based solely on the descriptions of her symptoms, the

literature suggests that this particular patient had Paget’s disease. This is “a lesion that looks

like a scaling, oozing weeping, crusting lesion of the skin of the nipple and areola

complex…[further] more than 90% of women with Paget’s disease have an underlying breast

cancer” (Pantanowitz and Benn 2002:74). Most importantly, “it is one of the few types of

cancer that should be treated with a mastectomy and immediate reconstruction as the cancer

can be arising from any area of the breast” (Pantanowitz and Benn 2002: 75). Given the gravity

of these symptoms, the participant should not have been subjected to the bureaucracy that she

endured.

Further, the participant was chastised for allegedly seeking help late when this was not the case.

This is an indication of the “status quo bias” that Dutta refers to in his work (2008:54). Loosely

defined, it refers to the tendency of affluent parties to refute or minimise the realities that

confound the underprivileged (Dutta 2008). Within a health communication context, it would

entail actions such as discounting the importance of various resources (such as competent

healthcare workers) and then reverting to patient shaming when these shortages adversely

affect their wellbeing. However, in the past status quo prejudices were evident amongst First

World parties (Dutta 2008). While inexcusable, their lack of empathy for the subaltern could

have been attributed to their being geographically removed from them (Dutta 2008; Amador et

al. 2015). Presently, we can deduce that status quo biases exist even amongst people of similar

ethnicities and geographical backgrounds. Drawing on the participant’s experience, I would

cautiously posit that they exist when people of similar rank unite against those they perceive

as inferior to them. They then choose to wield their authority, knowledge or whichever

mechanism that connotes their superiority against the marginalised person. Overall, it is

disturbing to realise that such inconspicuous, yet condemnatory practices occur amid

vulnerable people.

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No referral? No Treatment

It is also concerning to note that public hospitals do not attend to patients sans a referral letter18.

This may be a strategy that is devised to monitor the uncontrolled influx of patients. However,

the previous extract reveals that even in instances where a private medical professional

confirms the presence of cancer, the patient will not be attended to without the letter. When

one peruses a copy of the referral letter, there is a section that must be completed by a medical

officer from a “referral institution” (KZN Health 2003). The letter has several categories of

institutions that can issue it, and these include private health care facilities (KZN Health 2003).

However, in practice, it appears that referral letters are acceptable only if they are issued by

district clinics. If a patient initially chooses the private healthcare route and her financial

resources decline thus compelling her to seek public healthcare, she is forced to regress in her

treatment. Even if she was much further along, the public health care system compels her to

start from the very beginning. Common logic indicates that a local clinic is a miniature version

of a state hospital. Thus, their resources are considerably limited in comparison to the bigger

health facilities. Therefore, the decree that clinics must attempt to treat cancer before

transferring the patients to hospitals, defies logic.

This participant’s experience validates Mohan Dutta’s theorizing about instances where health

structures actively impede people’s access to healthcare (Dutta 2006; 2008). In this case, she

heeded her body’s initial warning signs that something was amiss. Further, she unknowingly

heeded the health department’s recommendation to seek immediate attention in the event that

this happens (Breast Cancer Prevention and Control Policy 2017). Therefore, it is

disappointing to note the hypocrisy inherent in making a specific stipulation, giving people the

impression that they will receive assistance if they adhere to it and then failing to do so. It is a

violation of trust in the healthcare structures and the capacity of the medical personnel within

it. While this may appear to be an isolated incident, it is not. Every single participant had a

similar story about their failure to deliver the quality service that is expected from them.

Rotating Referrals

18 Copies of the referral letter are available at www.kznhealth.gov.za/referralletter.pdf Accessed: 19 October 2017

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Another participant relayed her story of how health structures became the barrier to her

treatment thus:

D: 14th November 2016?

P: Yes. Last year.

D: So if you had to guess, how many times since November have you been up and down?

P: About 20. I left home and went to the clinic at Emthonjeni. At Emthonjeni they checked

me. I found a lump and I thought it was a boil. I went to Emthonjeni and they said no, they

didn’t know this disease-this thing. Then they wrote me a letter and told me to go to Harding.

When I got to Harding I gave them this letter and they told me to show them, I showed them.

Then they said they also couldn’t see this thing clearly. Then they transferred me to Port

Shepstone Hospital

D: Huh! So now you had to go from where you come from, to Port Shepstone?

P: I went to Yadi, the actual Hospital. Then at Shepstone they put me into a scan. They said

it was cancer and told me to go back. They then gave me a letter to Yadini. From Shepstone

to Yadini. At Yadini they read and read the letter and said they would take a sample that

would then come here [to Albert Luthuli] (Participant 16).

From the excerpt we gather that the participant’s first visit to the clinic was in November 2016.

This is after she detected a lump that she mistook for an abscess. She acted responsibly by

seeking medical attention in order to be assured that it was benign. The clinic she refers to is

in Mthonjaneni in Melmoth, which is a very rural part of the Kwa Zulu Natal province. She

was then transferred to the nearest hospital in Harding, which is 383 kilometres (4 hours and

14 minutes) away from where she originated from. They were unable to diagnose the issue and

transferred her to a bigger hospital on the South Coast of Durban called Port Shepstone. That

is an additional 77, 5 kilometres (1 hour) away. That is where they eventually confirmed that

she had breast cancer. Here we see Dutta’s findings about the adverse consequences of

geographically removed health facilities, being confirmed once again (Dutta 2006; 2008).

When the medical professionals at a proximal facility fail to diagnose disease, it becomes a

calamitous shortcoming. In this instance she was transferred several times to institutions that

were a significant distance away. This suggests that these limitations are not restricted to one

institution. They are prevalent at several hospitals in the Kwa Zulu Natal region.

Here we also see that the participant had adequate emotional resources or what Robeyn refers

to as “personal conversion factors”, which are key to optimal function (Robeyn 2007:99).

Evidently, she had the intelligence and the resolve. However, if these traits are not supported

by efficient structures, then an individual’s capability to function effectively is limited. Overall,

it is appalling to consider that an individual can visit a health institution approximately 20 times

in 10 months without their health improving, due to amendable factors.

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Causes of Delay

The excerpt above highlighted one common cause of delay, which is the lack of medical

expertise. This has been highlighted before by other researchers (Kingham et al. 2013). They

stated that many Third World countries are plagued by inept medical professionals (Kingham

et al. 2013). However, it was still astounding to discover that this challenge exists even in South

Africa, which is considered as more advanced than other African countries. The extract below

illustrates another key reason behind the delays:

P: I sleep over, then wake up and they keep telling me tomorrow. Here and also at

Addington. I’ve been there to do a morgascan, a body scan and a-

D: What is a morgascan?

P: That’s where they check whether or not it hasn’t spread to places like your head-how fast

your heart is beating, whether it’s been affected. Then they check your bones and whether

it hasn’t spread there. It’s a lot. There are many tests that I’ve done. I don’t know the names

of some of them. There’s the other one where you have to undress and then they take the

sick breast and pressurise it. You need to have all of that done (Patient 20)

Evidently, there is a battery of tests that must be performed prior to a cancer diagnosis being

established (Pantanowitz and Benn 2002). What is commendable is the degree of

meticulousness that KZN hospitals demonstrate towards this part of the process. It seems that

the health system is designed to ensure that patients undergo a complete physical examination

to determine both the presence and evolution of the disease (Breast Cancer Prevention and

Control Policy 2017). However, the setback is that these tests are not concluded in a single

session. The patient needs to make themselves available over a period of several months to

undergo the tests and receive the results.

Unskilled Professionals

The discussion above identified the shortage of skilled medical professionals at public health

facilities across KZN. However, it is important to comprehensively examine the extent of their

alleged ineptitude. The paragraph above gives the illusion that at their worst, unskilled hospital

staff exacerbate delays. While that alone is problematic, it can be resolved. The excerpt below

provides a sobering account of the seldom discussed, but hazardous consequences of

employing incompetent personnel:

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P: In December I went back to the clinic and told them that I felt as if this thing was

continuing to grow. They said because it was ‘holiday time’, I should come back in January

and they would transfer me to the big hospital. Then that’s what happened. There, they found

out that I had a lump. So, the doctor said he would write me a letter to come back again so

they could find out more about the lump. When I got to the ward, I slept and the following

day the doctor operated on me.

D: Oh…just like that?

P: Yes

D: So, was the operation to remove the lump?

P: The truth is the doctor decided on the operation by himself. He was trying to extract this

thing. While he removed it…I was awake the whole time and feeling pain…he kept saying

it would pass. I told him that I was in pain and that we should rather stop. After he operated

on me, he stitched me up and I have ten stitches here [unbuttons her shirt to reveal the scars].

After that he said he would take the sample to the lab and we came here to Inkosi Albert in

January. He then told me to wait until February when he would make an appointment for

me at King Edward where they would assist me accordingly. I went there, and they asked

me why I allowed such a huge operation to be done to me. I explained that the doctor had

been trying to remove the lump. They called the doctor to confirm this and King Edward

was adamant that he should not have done such a big operation. They said that all he needed

to do, was to take a sample. They said he should have poked me with a needle and used

some instrument to take the tissue from the breast. My doctor then tried to defend himself

by lying because he knew that he would get into trouble. When I got back home to Nongoma

and went back to the clinic, they said that doctor had left months ago, and they were not

sure where he was transferred to. So the clinic then transferred me here and I have been told

that they will try and fix me as much as they can. (Patient 8)

The excerpt depicts how a medical professional perpetrated several violations on the

participant. He was entrusted with her care but transgressed several professional and personal

boundaries. He was supposed to perform a biopsy in order to diagnose the nature of the lump

(Pantanowitz and Benn 2002; Women’s health Breast Cancer 2013). Without consulting or

explaining to her, he opted to literally cut it out of her breast. The literature reveals that at the

diagnosis stage, his actions were premature (Women’s health Breast Cancer 2013; Fact Sheet

Breast Cancer 2014). He should have opted for a “hook wire biopsy” …which can be both a

“diagnostic and therapeutic tool” (Pantanowitz and Benn 2002: 25). However, because of its

dual purpose, it requires a doctor’s technique to be exceptionally sophisticated. He is to perform

it with the understanding that the results could reveal a benign lump, where no future incisions

would be necessary. In that case, care should be taken not to mar the breast needlessly. If it is

cancerous, then repeated cuts into said breast would be guaranteed. Despite that, every effort

should be made to maintain the pristine appearance of the breast because of its value to the

patient. Further, if the incisions are executed conscientiously, they do not “interfere with a

mastectomy incision, thus making immediate or future reconstruction easier” (Pantanowitz and

Benn 2002:25).

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Overall, the procedure should have been minor and executed with the patient’s welfare in mind.

However, it became invasive. The patient did not consent to it, nor was she informed of what

it was for. Therefore, it was performed under duress and inhumanely. Afterwards, the patient

bore permanent physical scars. Her entire experience proves that the chauvinistic approach to

female patients, which is cited constantly in literature prevails (Thorne and Murray 2000;

Anderson 2014; Schulzke 2011). The doctor clearly considered himself an omniscient source

of knowledge. He then exercised his seemingly superior male intellect while he operated on

her. In fact, the callous manner in which he chose to extract the lump indicates that he did not

see her as an actual person. Instead, he saw a polluted feminine physical form (Lerclec-Madlala

2001). The only way the cancer ‘infestation’ could be removed, was “to excise the offending

parts” (Thorne and Murray 2000:146).

Importantly, this participants experience indicates that the subaltern status of the Black woman

prevails (Spivak 1988). During the apartheid era it was unconcealed (Fanon 1986; Dekker

2012). However, the excerpt indicates that it is now more understated, but just as injurious.

Prior to democracy being instituted, the South African subaltern were silenced through

aggression (Fanon 1986). In fact, this was exacted unapologetically. Drawing from the

participant’s narrative I posit that the physical violence endures, but the ownership of it is now

absent. The political correctness that pervaded South Africa after democracy makes it

impossible to brazenly harm those one sees as beneath them. Further, during our interview I

noticed that the participant’s English was fairly weak. I kept inserting it into the conversation

purely out of habit. Her disjointed responses were always a reminder for me to revert back to

Zulu. Afterwards, I inferred that she probably articulated herself in this diffident manner to the

doctor. That may have further solidified her marginal status to him, hence his total

obliviousness to her distressed protests. Her other subaltern qualities were her gender, race,

and social class status.

In sum, the excerpt indicates that the notion of an “unskilled” medical professional should not

be limited to scientific expertise (Kingham et al. 2013). While the academic competency is

crucial, it does not guarantee that someone is an effective healthcare worker. Evidently, one

needs to be free from every conceivable bias towards their patients (Dutta 2008). They need to

see them as actual people whose sick status does not signify inferiority (Mdondolo et al. 2003).

There is also a great need for empathy, as it dismantles the emotional barrier between doctors

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and their patients (Amador et al. 2015). Based on my deductions from the narratives, I would

argue that the emotional barrier is created by the scientific environment in which doctors are

trained. It is a well-known fact that it exalts rationality over emotion (Petraglia 2009; Mathibela

2015). Therefore, unbeknownst to them, doctors approach their patients as diseased bodies in

need of a cure, as opposed to sentient beings who require sensitivity from their physicians.

Consequences of Treatment Delays

The extended waiting periods have adverse consequences on the patients. These were made

clear through the following excerpt:

At R. K. Khan they gave me dates that were far away. The doctor that I found was very nice

to me. He had said if they give you dates that are far away, please come back and tell me. I

will change them because they have a habit of giving out dates that are far. These are the

dates for the check-ups, X-rays and scans and all of that. So, I went back and luckily, they

had given me a date that wasn’t that far away. I had gone in June and they gave me

November. At home I have siblings who are nurses. They told me “hurry up because this

might affect you and cancer can spread. So, go back there and tell them that it’s painful. Lie

to them”. I went back and told them that there’s something odd that I’m feeling and not

understanding

D: So, if you hadn’t lied, they wouldn’t have seen you?

P: No, they would not have seen me. My siblings complained about the date, that it was too

far. They were right because it was here, you see? [gestures to her breast]. It was a lump

here that you could feel, so they didn’t do anything. They just said that the date should be

in November. Okay I went back, they gave me painkillers and sent me back to the bookings

place and gave me a date within the month. They hurried up and did the tests there at R.K.

Khan. Then they checked me. It was still here and not here yet [points to different places on

breast]. Then it came back here and it’s moving on its own. Then it became a bulge and my

breast looked angry and red. (Participant 19)

Based on the excerpt we can presume that prolonged waiting periods are standard at public

hospitals. This is confirmed when the doctor advises the participant to inform him if the

administrative personnel give her a late appointment date, as per the norm. What is concerning

is that doctors appear to have the authority to alter the appointment dates at will. However, they

do so at their own discretion, which translates into a select cluster of patients being privileged

with timely consultations. Ideally this should be extended to every patient and not those that

are haphazardly chosen by the hospital’s physicians. What is also disquieting is the

participant’s relief in the five-month interval before her next consultation. It indicates that the

average waiting period is probably much longer.

We can gather that these massive time lapses force patients to resort to fraudulence in order to

receive medical care. It appears that the medical professionals at public hospitals are amenable

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only to patients whose cancer is visibly bothersome. In a previous extract, participant 11

alluded to this trend. Her requests for medical attention were only heeded when her breast was

noticeably deformed. Further, if a patient does not appear to be in pain, her cancer is stultified

with pain killers and she is dismissed. That is probably why participant 19 falsely claimed to

be in pain. Occurrences such as this demonstrate the soundness of Amartya Sen’s observation

about how power dynamics affect people’s capability to function well (Sen 2009). The hospital

is a powerful entity that determines whether or not patients have access to healthcare. Within

the hospitals, authoritative personnel such as the doctors wield their power over them as well.

They may not consciously inhibit them from receiving timely care. However, incidents such as

the one above, illustrate that this does occur.

From the extracts, we can infer that the protracted waiting periods contribute to the cancer

metastasising in the patients (Gray 2007; Odigie et al. 2010). The patients typically seek

treatment punctually. However, they receive it when the cancer has intensified to alarming

extents. Thus far it appears that the trajectory to commencing treatment is as follows:

Phase 1 Patient performs the Breast Self-Exam

(BSE)-Visits District Clinic

Phase 2 The District Clinic transfers the patient to a

District Hospital

Phase 3 The District Hospital examines the patient

Phase 4 The patient receives the results of the District

Hospital’s examination and is referred back

to the District Clinic

Phase 5 The District Clinic issues a referral letter to a

Regional Hospital where treatment begins

Table B: Standard Pathway to Initialising Breast-Cancer Treatment

The first phase is where the patient reports an abnormality in her breasts at a clinic that is

closest to her. The second phase is where she is transferred to a neighbouring hospital in order

for them to begin examining her. This is not immediate, and the patients have to wait for an

undisclosed period before the referral occurs. From there, she is transferred to an even bigger

hospital in the KZN region where she undergoes numerous tests and scans. She needs to avail

herself several times in order for all the examinations to be concluded and for the professionals

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to be assured that the results are conclusive. From what I could gather, if she is not in visible

pain during this point, she is confined to her home for a period of up to five months. However,

if her need for urgent healthcare supersedes her conscience, she can make false claims about

pain. Only then can the process be accelerated, and she can be seen earlier. Fourthly, she

eventually receives the results confirming the existence of cancer. At this stage, her initially

minor internal symptoms have manifested themselves outwardly. Once they are noticeable and

to the satisfaction of the hospital staff, she can begin her treatment.

Another important concern with the duration of the waiting periods, is that they propel patients

into an intermediate state that is rife with uncertainty. The narrative below occurred between

myself and a participant who was awaiting a second lump removal after the first attempt failed.

She was concerned that the length of the waiting period could lead to the formation of another

cancerous lump:

P: I would feel very very bad if it came back, because that would mean it’s come back to

claim me. Are there instances where it does come back?

D: In some instances, yes [nods]

P: My Lord, may it not come back Jesus. May it not come back.

D: What sometimes happens is that there are delays. They tell you to come back on this date

or that date and-

P: Just like today’s date. They scheduled it a long time ago. And I was anxious because the

date they gave me was too far away. However, they won’t see me if a date hasn’t been

specified. Now they’ve given me Tuesday. After that they still have to give me a date for

when I have to sleep in and have it [the lump] removed. Hopefully it won’t be too far away

as well. That’s what I’m praying for so that this thing won’t spread.

The extract reveals the participant’s apprehension. Logically we can infer that any individual

that is diagnosed with a potentially terminal disease would be eager to know the available

treatment options. Afterwards, they would be anxious to begin the process of returning to a

state of optimum health. However, the KZN hospital setting is not designed to cater to these

emotional concerns. The system appears to be geared towards processing nameless persons

into it, rendering medical services, dispensing medication and then expelling them out, only to

begin the cycle again. Even the phrasing of its objectives is austere:

4.2. Early detection, diagnosis and treatment: the aim should be to detect and treat breast

cancer disease, by ensuring access to appropriate diagnostic and treatment procedures in

designated breast units. The most effective and efficient treatment is linked to early

detection programmes and follows evidence-based, gold standards of care (Breast Cancer

Prevention and Control Policy 2017: 20)

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Evidently, no mention is made of the emotional impact that deviations from these objectives

have on the patients. The anxiety that patients must endure as they wait for the system to deliver

is unaccounted for. It is assumed that patients have all the necessary information about cancer.

Therefore, they can be inserted seamlessly into the system. However, we can gauge from the

participant’s response, that she is oblivious to the possibility of cancer recurrence (Gray 2008;

Pantanowitz and Benn 2002). Once she did know, her response suggested that she would be

devastated should that occur. Intellectually we can surmise that the seemingly interminable

waiting periods compound the negative emotions that are related to a cancer diagnosis. When

hospitals allow these delays to occur, they violate the stipulation of the departmental policy

which mandates consistent gold standards of care (Breast Cancer Prevention and Control

Policy 2017).

Accessing Breast Cancer Information

Written material

It was interesting to note that there is a disparity in access to cancer information. It is caused

by various factors. When asked how and where they obtained information on breast cancer, the

participants responded as follows:

P: They gave us papers. They gave us papers to read.

D: Who? The nurses?

P: The doctors and the nurses

D: Do they give it to you the very first time you arrive at the hospital?

P: When you first get here they give you a paper to read. There is a lot that is written on it

and some of it I’ve forgotten because I’m old. There’s a doctor from Musgrave who sent me

a book that explains everything about cancer.

D: Do you read the book yourself?

P: I read it.

The excerpt indicates that public hospitals do furnish their participants with cancer pamphlets

on arrival. The participant remarked that the information written on these pamphlets is dense

for somebody in the fifties, whose memory may be declining. Therefore, while the initiative to

provide written information is commendable, the overall suitability and quality is questionable.

A younger participant alludes to this in the excerpt below:

As for the information, they don’t give it to us. I find it for myself. I realised that we don’t

get information properly. I interact with much older people because of this thing [cancer].

So, you can clearly see that they don’t know anything. So, I usually find it for myself on my

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phone, I read books, I find information on my own. They don’t give us information.

Somebody just blasts you with the news that “you have cancer, you need to go to Addington

to do this and that”. They don’t ask you: “what do you want to know about cancer? What

are you supposed to do, what are you supposed to eat, what should you stop doing? They

just give you a book, like “alright, now you have a book”. Then they tell you “you have

cancer, come back on the 28th, you’re going to Addington”. Then you have to get out and

go home with that lump in your mind. Your mind is- they don’t have a way of conveying

information. They don’t have it in them to think that right now we’re going to tell whoever

that she has cancer, so we need to have a counsellor here who can tell her what she can do,

what she can’t do (Participant 4, aged 22).

The participant’s response indicates that the gap in accessing information is indeed related to

age. As a younger woman, she is more technologically savvy than the older patients. She

realised early that the information supplied by the hospital was inadequate. She then utilised

the internet to conduct her own cancer research. In this way, the older patients are tremendously

disadvantaged communicatively (Dutta-Bergman 2005; Dutta 2008). Additionally, we gather

that because the pamphlets have no utility to them, they do not have explicit guidelines to help

them navigate through their cancer journey. The excerpt indicates that they are bombarded with

the news of a positive cancer diagnosis. From there, they are given their schedule for their next

appointment and a cancer booklet. The information is delivered in a perfunctory and

impersonal manner.

If this occurrence is common at public hospitals, then it gives credence to the references to

communicative marginalisation that are pervasive throughout this dissertation (Dutta 2005-

2008; Albrecht 2006). If sick people are denied appropriate information about their condition,

they are denied the opportunity to be conscious and critical (Schulzke 2011). They are thrust

into a position where an external party determines what they should know and what must be

withheld from them. This is an infringement on their freedom to choose for themselves (Ranuga

1960; Spivak 1988; Sen 2009). Further, this denies them entry into the global discursive space

(Dutta 2005-2008). Notably, the current distribution of information indicates the presence of a

“pro-literacy bias” in the hospitals’ communication model (Melkote and Steeves 2001: 233).

Hospitals subscribe to the fallacy of an intellectually proficient body of patients, who can

instantly grasp the knowledge that trickles down to them (Melkote and Steeves 2001). Their

current strategy overlooks the fact that these women are individuals with similar but different

backgrounds. Their academic backgrounds and ages vary greatly. Therefore, hospitals cannot

realistically depend on their current communication model as it is grounded on one variable,

which is literacy and that is not universal amongst their patients.

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Mass Media: Radio

Other participants mentioned that they depend on various mass media outlets such as the radio

for cancer information:

P: You see usually, I just turn on the radio and find out a lot from the news. I find out a lot

of things from the radio and I chat about it. I ask my family “have you heard what is

happening” and my mother will say “you’re always sitting next to the radio” and I tell her

“well I am sick, and I always need to be on guard you see?” What I also heard on the radio

is that there are no doctors. The doctors quit straight. So now I’ve just heard that they said

the manager here is the one who should do the hiring. He should hire doctors.

D: The manager?

P: I think so. The doctors are complaining about the fact that there are no assistants here

D: No nurses you mean?

P: There are no work assistants. There is no equipment to help medical students, there is

still a shortage. That’s what I heard clearly on the radio (Participant 25, aged 34).

Evidently the participant is vigilant about remaining knowledgeable about breast cancer. Her

attentiveness indicates that she is serious about her health and discovering new insights that

could improve it. What is unclear is whether the radio provides supplementary information or

if it is the primary source of it. Additionally, she did not provide specific details about the radio

station or programmes she listened to. Therefore, it can be presumed that she scans the radio

channels with the hope of coming across a cancer discussion. Thus, questions such as the

general frequency and depth of breast cancer coverage on the radio are raised. Knowing this

could help us ascertain the degree of significance that it is given. It would be burdensome for

people living with breast cancer to be attached to the radio with the fervent hope that it might

be mentioned. Conversely, if cancer received regular coverage without an attentive audience,

that would be equally futile. What is also notable about the excerpt is that it legitimises the

scholarly posturing on the significance of the subaltern entering the discursive space (Dutta

2005-2008). The participant’s awareness of the challenges that are facing the health system

clearly empowered her. It helped her to comprehend the challenges that the institution she

depends on for healthcare is facing. In this way, she can formulate opinions and possibly

suggestions for improvement since she is an affected party. Importantly, her knowledge of the

challenges that confront IALCH is accurate. According to the November 2017 issue of the

health department’s Health Chat19, there are no permanent oncologists there. “There are part-

19 The latest issue of the KZN Department of Health’s Health Chat is available at: http://www.kznhealth.gov.za/comms/HealthChat/November-2017.pdf Accessed: 17 November 2017

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time oncologists and support from Grey’s Hospital. There are [only] 4 medical officers and 6

registrars, who will be relocated to provinces to complete their training. There are also [only]3

radiotherapy machines” (Health Chat 2017:7). Overall, providing information to patients can

be equated to giving them a voice.

Language Dilemma

Another impediment to the effective delivery of information is the language barrier.

Participants reported that their consultations were usually with English speaking doctors. They

are not native Zulu speakers, which means that their proficiency varies. Thus, participants

involuntarily become silent observers during these critical interactions. Kincaid and Figueroa

(2009: 1321) refer to this imbalanced distribution of knowledge as “information inequity”. One

participant summarised her experience thus:

D: Do you speak to the doctor directly when you are here, or do you speak to the nurse?

P: Here [at Albert Luthuli] it was a doctor. That day it was a Black person.

D: Are you able to speak directly to the doctor?

P: No, they have to translate for me

D: Who translates? The nurse?

P: Yes

D: Do you trust the nurse’s translation?

P: I would say I do because I do catch some of it. It’s just usually when I listen, my mouth

doesn’t allow me to respond (Participant 9).

From the excerpt it appears that the language challenge necessitates the presence of a translator.

This can be problematic as the patient has no way of evaluating their competence. Thus, crucial

information that could literally influence whether the patient lives or dies has to be filtered

through two people before reaching her. When the appointment eventually arrives, she cannot

maximise it because of the language barrier. Further, the hospital policies do not account for

the personality aspects of the people that are involved during these appointments. For instance,

if the patient is a reserved individual who would prefer a private audience with the doctor, they

are forced to endure a third party’s presence. Further, they are indebted to said third party as

he or she has to translate intimate information about their treatment. Drawing from Dutta’s

(2008) theorising once again, I will infer that the personality dynamics are crucial in general

communication. When language impediments and sick people are involved, close scrutiny to

them becomes vital. Personality differences determine whether or not the cycle of knowledge

imposition as opposed to exchange endures.

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Professionalism when conveying information

The poor delivery of cancer information was frequently yet hesitantly cited. The dissatisfaction

is illustrated in the excerpt below:

D: Do they explain properly?

P: Sometimes they do explain, but not much. It depends on the clinic you go to because they

are not the same right? At some you can get answers if you ask a question. Sometimes the

nurses are not very helpful, some of them are not alright, but people are different. Sometimes

you can ask something, and they probably were upset at home, but then they take it out on

you. They can’t sit down with you and ask you why you are there and things like that

(Participant 20).

We can gather that the level of information a patient gets is contingent on the type of institution

that they visit and the staff members they encounter. We can detect the sense of trepidation that

participants experience as they consider asking questions. It is deeply disturbing to note this

degree of unprofessionalism towards chronically ill people, who direly need information.

Based on the KZN policy documents, dispensing knowledge is a crucial health service that

should be rendered (Breast Cancer Prevention and Control Policy 2017). Doing this with

compassion is in accordance with the gold standards of health care (Breast Cancer Prevention

and Control Policy 2017). Therefore, the fact that some health professionals fail to adhere to it

is alarming. Furthermore, the realisation that patients now consider this negligence normal and

disregard it as individual eccentricity when they experience it, is also concerning.

From Strangers to Sisters on the Bench

The interviews revealed that the long hours that patients spend waiting on hospital benches

leads to the development of companionship. These are not the pretentious relationships that

grudgingly grow when people are forced to be within proximity of each other. These were

organic connections where valuable insights were shared. Participants who were confused

about what to expect after being diagnosed, sought clarity from those who were at advanced

stages of treatment. These women filled in the information gaps that the professionals may

have left open. Furthermore, they provided solace to each other when fears arose, without

judging whether they were legitimate or irrational. Listening to these narratives of

identification and unity amongst strangers indicates that the “Ubuntu” that Mabogo P. More

(2005: 156 in Cornell and van Marle 2015) refer to, still exists in the Zulu community. As

aforementioned, Ubuntu concerns itself with validating each other’s humanity (Samkange and

Samkange 1980; Cornell and van Marle 2015). Furthermore, it is where we move beyond our

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individualistic preoccupations and prioritise those of others, in order to grow collectively

(Samkange and Samkange 1980; Cornell and van Marle 2015). I can state without a morsel of

doubt that shared growth occurs on the hospital benches. Participants meet during a time of

immense physical and emotional turmoil. However, they typically end their treatment as an

emotional composed unit that is united in its hopes for recovery. The hospital system is

designed to be systematised and functional. Therefore, pragmatic concerns supersede

emotional ones. However, the benches produce warmth that combats the profoundly

melancholic hospital environment.

Demystifying the Myths

Our conversations demonstrated that there is a great need for accurate breast cancer

information. They revealed that the patients had internalised many myths about the illness.

These ranged from the allegedly misguided actions that they took which caused the cancer to

develop, to those that could have caused it to intensify. For instance, a participant believed that

choosing to take contraceptives activated the cancer. Clinicians agree that “the pill is generally

safe, however, taking oral contraceptives for over five years by young females before their first

pregnancy (oestrogen window period) appears to increase the risk of premenopausal breast

cancer minimally” (Pantanowitz and Benn 2002: 74). Further, the contraceptive pill is a form

of hormone therapy. Hormonal drugs are occasionally prescribed to combat cancer

(Pantanowitz and Benn 2002). Therefore, the probability of a woman “actuating” cancer

through the pill is minute. Several others ignored the early warning signs of change in their

breasts. They attributed them to breastfeeding, which does not cause cancer. There are several

breast-feeding health issues that are often mistaken for cancer. They include “galactoceles”,

(which are milk retention cysts) and abscesses (Pantanowitz and Benn 2002: 29). These often

occur due to improper breast-feeding activity (Pantanowitz and Benn 2002). Their prevention

and treatment range from minor practices such as increasing the frequency of feedings, to using

cold cabbage leaves to alleviate discomfort, to minor surgical removals (Pantanowitz and Benn

2002).

These misconceptions are concerning because they lead to participants harbouring undue guilt.

To this end, “most breast cancers (90%) are sporadic. This means that the cancers arise in any

women, at any time, and are the result of the interplay of …risk factors. i.e. the effect of the

environment on the genes” (Pantanowitz and Benn 2002: 43). Therefore, no woman should

entertain guilt when it is nature’s interaction with her body that caused her illness. This should

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not be intensified with unnecessary remorse. Secondly, the myths are genuinely incorrect.

There is no categorical scientific correlation between the use of contraceptives and cancer

development. Further, there is no evidence to support the claims about breast feeding

definitively exacerbating cancer. However, there is ample evidence from studies about Black

breast cancer patients, which regards breast feeding as a protective measure against the disease

(Formenti et al. 2012: 2; Kruger and Apffelstaedt 2007). Therefore, the apparent pervasiveness

of these beliefs indicates that the numerous calls for breast cancer awareness amongst African

women should be heeded urgently.

Is Breast Cancer Hereditary?

A substantial amount of literature purports that breast cancer is hereditary (Bodurtha et al.

2014; Women’s health Breast Cancer 2013; Kruger and Appfelstaedt 2007; Porter 2008).

Further, it outlines the measures that some women take to reduce their genetic predisposition

to the disease (Bodurtha et al. 2014; Women’s health Breast Cancer 2013; Kruger and

Appfelstaedt 2007; Porter 2008). However, only 3 of this study’s 30 participants indicated that

there were other women in their families who had previously been diagnosed with breast

cancer. When questioned about having possibly inherited it, one participant responded as

follows:

P: No. I asked my mother if there has ever been anyone else and she said no. but I couldn’t

ask my father because he is late. My daughter also keeps asking me the same question.

D: What do you tell her?

P: Well she can see that I am sick, and she asks me if I’m going to be operated on, how I

feel. You know, questions like that. Then I tell her I will be fine because she’s afraid, since

she is a girl. She asked me: Ma, will I also get cancer because they took my blood at the

hospital and they said I should come back when I’m 18 so I can get checked and be protected

so that if they find anything it will be alright quickly for me? So she is hopeful and has that

hope that she will also be fine (Participant 7, aged 30).

The excerpt does not negate the theory that breast cancer can be hereditary. However, this

study’s sample was too small for that logic to be applicable. Notably, the excerpt does indicate

two important issues that require further scientific exploration. Firstly, the age of the women

being diagnosed is lowering rapidly. This trend has been highlighted previously and its

repeated discovery indicates that it may have a degree of validity (Kingham et al. 2013; Stefan

et al. 2013; Opoku 2012). However, the exact cause of it is unclear.

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Secondly, there is seldom any allusions to the actions of the females whose relatives are

diagnosed with breast cancer. Presently, the excerpt indicates that younger women are

beginning to take precautionary measures after their loved ones are diagnosed. This is

encouraging as many health communication interventions advocate timely action in order to

guarantee early detection or treatment (Kruger and Apffelstaedt 2007; Women’s Health Breast

Cancer 2013; Fact Sheet Breast Cancer 2014). Further, there now appears to be tentative steps

towards open dialogue. In the past, women have reportedly suppressed themselves. This

finding suggests that we are gradually moving towards a more positive direction.

Previous Breast Cancer Diagnosis

An intriguing finding was related to recurrent breast cancer diagnoses. Only two of the

participants reported having this experience. Their accounts of it are as follows:

P: I was very sick on this breast when I was young.

D: Ma may I ask if anyone else in your family has had this or if you are the first?

P: I got this a long time ago when I was young and still a makoti. I was still young and had

my first child.

D: If you don’t mind, please could you tell me how old you are now?

P: Years coming to the hospital?

D: No. I mean your age? Do you remember it?

P: [Reaches into her knapsack and pulls out her ID document]

D: 1935! Wow. You look so fresh. Thank you

P: When I was young and a makoti this breast swelled up. I had been treating it in the

Sintu (African) way. They said it was a nyamakazi.

D: What is a nyamakazi?

P: It is the tearing in the breast. It tore as well. Nobody cut it. Then it healed and healed

and healed. Then I went to Swaziland to work. After it healed, I came back here to

Mhlabuyalingana. Hawu, then the breast, it became this big. (Participant 18, aged 82)

The insert indicates that breast complications are a repetitive issue for her. During her initial

illness many years ago, she was unaware that the root cause was cancer. It was haphazardly

dismissed as minor tearing. She then sought out Zulu traditional healing remedies and they

appeared to alleviate her symptoms. The time period that elapsed between the first diagnosis

in her youth and the current one at 82 years old is unclear. However, we can presume that it

was several decades. Therefore, she registered shock when her old symptoms returned. This

participant’s experience is similar to that of my relative who partially inspired this study. With

the benefit of hindsight and further probing into these incidents, I would posit that both ladies

probably developed “micrometastases” (Pantanowitz and Benn 2002:53). These are small

islands of malignant cells that develop in the body. Research indicates that 10% of women

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develop a stealthy form of these toxic cells and will probably die rapidly from it as it

indiscernible through the usual methods (Pantanowitz and Benn 2002). The other 90% who

develop a more overt form of these tumours can survive for approximately 5 years or much

longer even if they are receiving the correct treatments (Pantanowitz and Benn 2002).

Both incidents demonstrate that older Zulu women typically seek healing through traditional

means first (Campbell-Hall et al. 2010). It also indicates that these remedies provide relief to

breast related ailments, albeit temporarily. The excerpt also indicates that the criticism of

traditional healers is merited in some instances (Ashforth 2005; Mathibela et al. 2015). In this

case, the participant was not given any specificities about her ailment. Details such as the core

cause of the problem, its progression and the properties of her treatment were omitted. It is

unclear whether that first dose of treatment cured the cancer only for it to recur because of other

factors, or if it made it momentarily undetectable because of silent micrometastases

(Pantanowitz and Benn 2002). Therefore, in the interest of fairness we cannot completely

denigrate traditional healers and their remedies. As we can clearly see, Western methods are

not entirely failsafe either. However, there is an unquestionable need for precision.

The second participant surmised her experience thus:

P: Let me tell you my child. This thing started in me long ago. I was sick of because of my

breasts a long time ago when I was younger. I had just had a child and right now I think she

is about 25 or thereabouts. They swelled up and became this big [gestures with her hands]

D: Both of them?

P: Yes.

D: How old were you?

P: My child I am not educated. I don’t pay attention to ages. Then we went to prophesy. We

went to abathandazi and the abathandazi said I was experiencing amandiki from where I

was married to. Then they called an inyanga and we slaughtered for the amagobongo and

they went away. And so, I relaxed until I got old, which is now.

D: So, they had been swollen?

P: Eh heh.

D: And he gave you imithi?

P: Eh heh.

D: How were you taking them?

P: I would vomit.

D: And you were alright after that?

P: I was alright, I was alright. For years in fact. I tell you I was 5 months pregnant with my

child. Now she has a bhungu who could have a child of his own. Then it came back now.

But it didn’t come back in the same way as before. Last time the breasts swelled up. Now,

there is a lump. Eh heh. There’s a lump. (Participant 17, age probably 65 or older).

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The extract validates earlier findings about Zulu people’s belief in the dual causes of disease

(Comaroff and Comaroff 1999; Mills 2005:132; Steyn and Muller 1999, Muller and Steyn

2000). Consulting traditional healers in order to discern the physical cause of illness connotes

the import of spirituality to the participant. Further, placating divine spirits as the first step

towards healing, suggests that illness is considered an indication of a spiritual disconnection.

In order for it to be restored, amends must be made. Furthermore, the step to expelling the

illness from the body through purging with imithi demonstrates that treatment is approached

holistically (Ashforth 2005; Flint and Parle 2008). Complete healing cannot occur unless both

the physical and spiritual causes are addressed (Comaroff and Comaroff 1999; Mills 2005;

Steyn and Muller 1999, Muller and Steyn 2000). What is interesting to note is the fact that the

second bout of breast problems was more intense than the first. The decision not to treat it

through biomedical means is indicative of a changed mindset. I would presume that their failure

to cure her during the initial attack led to reduced confidence in their efficacy. Overall, we can

conclude that the older generation of Zulu women are agreeable to traditional healing as the

line of treatment. However, they are increasingly gravitating towards Western healing methods.

Cancer Conversations

Zulu men as Caretakers

It was important to establish whether the participants extend the cancer conversations beyond

the confines of the hospitals and clinics. The motivation behind the posing of that question

was to gauge the social visibility of and receptivity to the disease. Further, the older literature

suggests that Zulu communities are typically conservative (Wright 1997; Mdondolo et al.

2003). Therefore, it was important to find out whether they were willing to candidly discuss a

condition that affects a private body part. The responses this question elicited varied. One

participant responded as follows:

P: My mother is there when I need to talk. My aunts are also there, and even my child’s

father is incredibly supportive. I’m sure you know how men can be. They sometimes change,

but he hasn’t changed. He’s very supportive

D: Do you talk openly with him?

P: We talk. Even when he doesn’t want to or feel like talking about it all the time, but when

he has time…. he gives himself the time to read about it. When he comes back from work

he will say: “I read that your thing is like this and like that. Or I just found this out about

your thing”

D: [laughs] your thing?

P: [laughs] yes, my thing. He reads, and he tries to stay well-informed about it. He knows

that when I start reacting in a certain way, that is what is causing it. (Participant 13)

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The extract indicates that the participant is surrounded by a supportive family structure that

permits cancer talk. Discussing cancer in a hospital is normal considering that they are sites for

clinical conversations on all disease. However, the realisation that participants have other

sanctuaries where they can go beyond the monotonous scientific discourse, is heartening. It is

also encouraging to note that Zulu men are now agreeable to talking about breast cancer. Earlier

in the study I examined their notorious antagonism towards this subject (Lerclec-Madlala 2002;

Ngubane 1977). In fact, they once regarded the breast with severe trepidation if it became

diseased (Lerclec-Madlala 2002; Ngubane 1977). The affected woman was then regarded

apprehensively, if at all. Often, her husband would replace her with a healthy co-wife. Overall,

the loss of a breast translated into the loss of a joyous life. This was replaced with relegation

into obscurity within the home.

In the above case, it appears that some Zulu men are availing themselves to their partners in

several significant ways: firstly, they are becoming confidants. Secondly, they are becoming

research assistants who seek out valuable information for their partners. This is novel and

commendable because there is a widespread knowledge deficit amongst African cancer

patients. Therefore, it is reassuring to note that they have partners who can be co-seekers of

knowledge and rectify the deficiency. Based on the excerpt we gather that the information

search equips intimate partners with the skills they need to respond effectively to the side-

effects experienced by the women. In this way, their caretaking skills are enhanced.

Importantly, the reported consistency in attitude towards the participant suggests that her

identity has not diminished in her partners eyes. His summation of her seems fair as evidently,

he regards her as a loved one, who simply requires support due to a health condition. Thus, the

participants retain some measure of stability in their lives after it is destabilised by a cancer

diagnosis.

However, what was concerning is the reference to cancer as “her thing”. It connotes a

reluctance to fully accept that the disease affects everyone she is close to. In reality, it has

seeped into the fabric of all their lives. Their support of her indicates that they are aware of this

on some level. However, the choice of vocabulary suggests that her partner is yet to consciously

acknowledge it. Therefore, the participant is somewhat isolated by this subliminal denial of

their new reality.

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The trend of emotionally supportive Zulu men was widespread amongst this group of

participants. Another described her experience of it thus:

D: Who do you talk to?

P: I have a partner who lives with me. We discuss everything. There’s nothing that we don’t

talk about with him. Even when I am in pain and suffering he’ll ask if I am okay. He even

says things like “tell me why you aren’t menstruating because you are supposed to be having

your period now?”

D: Hah…. hah!!

P: I’ve never seen such a talkative male.

D: How old is he?

P: He is 24 years old. But he’s talkative and I always say that I have a talkative boyfriend. I

even tell him that he’s talkative. (Participant 7, aged 24)

The willingness to go beyond cancer concerns and discuss various female issues is heartening.

If the participant’s partner had restricted the dialogue to cancer, I would have construed it as

an obligatory act, which is perhaps motivated by guilt. However, his willingness to go beyond

breast cancer suggests that men no longer dismiss serious health problems as “women’s

issues”. This is encouraging to witness because it suggests that the veil of shame that once

covered them is slowly being lifted (Wright 1997; Kline 2007; Pillay 2002; Wadler et al. 2011;

Kingham et al. 2013). Additionally, the relatively young age of the participant’s partner

suggests that the current generation of men are relinquishing the archaic beliefs of their

predecessors. They now embrace what was once vilified and shamed.

Absent/Inadequate Emotional Support Structures

It is also important to note that unconditional emotional support is not afforded to every Zulu

woman who needs it. Several participants had no outlet for unburdening themselves. The

excerpts below depict two accounts of involuntary emotional repression:

P: I don’t go to church, I don’t have a friend, when I meet someone I can chat with like you

for instance, I am able to talk to them and feel a bit better you know? But I don’t have a

friend. I can’t talk to boyfriends. I try but they don’t have a full understanding you know,

but they know how to listen. (Participant 6)

P: I’m able to talk to him but most of the time I’m the one who gets irritated and make him

get fed up. When I have my stress, I talk about cancer and the treatment and getting sick

from it. I end up scolding him for sweet nothing and he’ll just leave and go to drink alcohol

and he’ll come back in the early morning drunk. Mind you, I’m not supposed to be stressed

in the first place but I’m the cause of his behaviour.

D: But you are sick.

P: He’ll then lose interest in everything and we’ll quarrel. (Participant 9)

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The first extract suggests that participant 6 may have been a loner even before her cancer

diagnosis. Once it became known, her solitude intensified. However, she now clearly yearns

to connect to people and share her feelings. Thus far her attempts to vent to intimate partners

have been unsuccessful. They are willing to listen, but do not offer words of comfort because

cancer is a foreign subject to them. Therefore, these encounters can be equated to poignant

monologues with an unresponsive audience. She appears to have more reciprocal

communication from intermittent encounters with strangers such as myself. Overall, it is

concerning to note that there are women who have to single-handedly process living with a

terminal disease.

Participant 9 has a partner that she can converse with. However, he appears ill-equipped to

manage the emotionally strenuous aspects of their dialogues. She appears to be undergoing

various stages of emotional turmoil and lacks the tools to process them effectively. As a result,

she unleashes her pain onto her partner. Since he does not know how to respond in a supportive

manner, he resorts to alcohol consumption. This destructive pattern seems to have become

normal. However, as she aptly indicates, it is detrimental to her already compromised health.

Overall, this extract indicates that cancer cannot be managed in isolation. Patients need a

dependable support structure where their feelings (however intense) can be articulated and

validated (Grimes and Hou 2013; Nelms and Gorski 2006). Further, we can infer that the

emotional toll of cancer filters into the lives of their loved ones as well. Many of them are

probably not healthcare professionals. Therefore, they may not know how to adjust to the

changes and be nurturing towards the participants at the same time.

Assessing the General Inclination to Talk

As aforementioned, the findings indicate that participants have an immense desire to talk

unreservedly about cancer. However, the conditions need to be conducive in order for these

uninhibited dialogues to occur. From what I could gather, trust is the primary feature that must

be present. The participants did not state this explicitly. However, this can be discerned from

the responses they gave after being asked to name the people they informed about their cancer

diagnosis:

D: Who did you tell at home?

P: I told my boy

D: How old is he?

P: He’s forty-something. He’s from 1969. So, I only told him and nobody else. And I also

asked him not to tell anyone else. If I die, let me die.

D: Hawu…why?

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P: People talk. They go around “planting”. “You see her? She has cancer”-you see? So I

was suspicious

D: Were you telling him because he’s the eldest or-?

P: He’s not the oldest. He was the one closest to me. My daughter does not come near me.

I don’t know what I did to her. So, I told him because I know that he’s the one who loves

me

D: What did he say?

P: He was very sad, but he’ll be happy now that they’re saying that they’ll remove the lump

that’s left and it hasn’t spread all over the body. (Participant 15)

From the excerpt we gather that the participant disclosed her cancer status to somebody she

trusted to keep it private. She was adamant that nobody else should know, lest they violate her

trust through gossip and judgement. Her response indicates that trust is not automatically

bestowed, it must be earned. It appears that even blood kin such as one’s own children must

earn it by being loving and empathetic.

The fear of trust being betrayed is always lurking in the minds of patients. The brief excerpt

below indicates this:

Even if I know that I’m going to cover up, there will be someone who knows that ‘Gugu

doesn’t have a breast’ and then they will also tell someone else. (Participant 1)

Evidently, privacy is a highly valued right that participants guard fiercely. From what I could

gather, they are highly protective of it, as it gives them some measure of control regarding the

number of people who know their diagnosis. Further, the concerns around disclosure relate to

both the quantity and character of the people they share it with. Participants were wary that

choosing poorly could result in them being fodder for their community to dissect.

Public Disclosure: Young vs. Old Perspectives

Another interesting discovery is that the older participants were less guarded about sharing

their cancer diagnosis. In fact, they publicly volunteered the information:

P: My child I don’t want to lie. I tell them all. Even the people at church. I stand up and tell

them. I don’t want people to think somebody killed me or somebody did this or that to me

and so on. (Participant 26, aged 66)

P: I told my mom at home. I told her and makoti. Makoti said “ayi sisi keep going. Keep

trying I don’t want to lie to you. P: I also go to church and I told them. If they lay their hands

on me I have hope. Before I came here to the hospital, they prayed for me shame. I know

that even when I’m here, they pray for me back there. (Participant 4, aged 50)

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Evidently, both participants are more secure within themselves. Their motives for publicly

sharing the news about their diagnosis are different, yet still contingent on the trust factor

(Muhamad et al. 2012). It can be inferred that Participant 26 disclosed her status because she

was attempting to combat possible speculations that could arise in the event of her demise.

Unlike the younger participants however, her main concern was with assuring the community

that nothing untoward caused her death. She is not held hostage by the fear of being judged on

a personal level. Importantly, she trusts that the purity of the intentions behind her disclosure

will be clear.

Participant 4 shared her diagnosis with several people. I presume that her intention was to

garner much needed emotional support. She was probably aware that living with cancer would

be challenging. Therefore, she anticipated that she would need encouragement in order to

survive the experience. Importantly, she trusted that the people she divulged her illness to

would uplift her when she required it most. Based on both these participants’ ages, I would

argue that they still subscribe to the Ubuntu principle (Samkange and Samkange 1980; Cornell

and van Marle 2015; Metz 2007). They appear to have that spirit of solidarity with one’s

community. They appear to value being able to share their experiences, so that others can either

grow through or go through it with them.

Stigma and Shame

In earlier chapters of the dissertation there are references to the stigmatising effects of a breast

cancer diagnosis (Bell 2014; Wright 1997; Meneses and Yarbro 2007). Some of the study

participants reported experiencing this from both family and community members. This

intensified their already impaired sense of worth. I have previously alluded to the fact that our

self-concept is formulated primarily by other people’s perceptions of us (Taylor C. in Dekker

2012). If they are positive, we adopt an optimistic perspective of ourselves. Conversely, if they

project negativity, that too is instilled in us. We begin to believe that we are defective

irrespective of whether it is true or false. The participants who received negative feedback from

others after their cancer status was known, internalised it wholeheartedly. Consequently, they

reported feeling stigmatised:

P: I am dead, but I’m walking. It’s only that God is still refusing with my spirit. I don’t get

any help, I don’t know where to go if I do need help, the community shuns me. You know

us cancer patients are bigger outcasts than people with HIV/AIDS, even though I got the

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cancer from my genes or from bad luck. It’s not like HIV/AIDS. Everyone knows where

you get HIV/AIDS from. Rarely do you get it from a car accident. There’s only one way to

get HIV/AIDS. But those people are not shunned in the same way that we are.

D: Why do you say you’re shunned?

P: Have you seen somebody after they’ve heard you have cancer?

D: No

P: When they look at you… [claps hands and mimics a sad face] They say “awu shame”.

Others lose it even more by actually asking you: “oh I heard you’re sick, awu shame”.

Saying “shame” on its own means that it’s over for me. However, people with HIV/AIDS

take their pills. “Hawu oh, you have HIV/AIDS girl’?” “Ai it’s alright because of the pills”.

With us, the person will start off by saying ‘awu shame aaaaaah, they say this thing kills’.

There’s nothing else that comes out of their mouth. They always start off with: “they say

this thing kills”.

D: So, you don’t like the sympathy?

P: I don’t want sympathy. I don’t like pity. Even at home, I don’t like it when they keep

saying: ‘how do you feel?”. If I’m sick, I’ll say I’m sick. When I am not sick you will see

me doing my things the way I usually do them. I don’t way excessive pity. (Participant 15)

Essentially, the pessimistic comments that people make about cancer led the participant to view

herself as a walking corpse. She believes that her vitality and other qualities which made her

feel human were annihilated by cancer. As a result, she felt ostracised by community members

who had exceptionally fatalistic beliefs about her condition. What was interesting to note was

her barely contained frustration at the injustice of being shunned without cause. The reference

to HIV/AIDS, highlights her belief that people contract it strictly through risky behaviour.

However, they are not subjected to the disrepute that she has to endure. She believes that is

unfair as she did not engage in activities that could have endangered her health. She appears

deeply resentful at being an innocent victim of negative circumstance. Further, the feeling of

being ostracised is exacerbated by the excessive sympathy some people show her. She seemed

to find it patronising. She interpreted it as their fear that cancer had rendered her helpless and

diminished from the person she once was. Overall, I would infer that people are largely

unaware of the stigmatising effect that their careless comments and behaviours can have on

cancer patients. The participant’s narrative strongly indicates that there is a massive need for

mindfulness and sensitivity during exchanges with sick people.

Excessive Unsolicited Publicity

Unwanted social scrutiny is reportedly another by-product of breast cancer. Patients recounted

having to endure endless speculation while their community members adjusted to their altered

physical appearance. I deduced that patients yearned for privacy or at the very least, to be

treated normally after their diagnosis. The desperation for these needs to be fulfilled is evident

in the illustration below:

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P: Can you imagine somebody having their breast sheared off?

D: [laughs] No. I like the way you describe it though. “Sheared off” though…

P: Even in the community everyone now knows that you have one breast. It’s not a good

feeling. I won’t lie, it’s not a good feeling. Do you know what I suggested? I said to them

that they must cut both the breasts off. What could go wrong? They must cut them both off.

Can you imagine taking your clothes off around your friends? Imagine that confusion. Have

you see somebody with one arm? Have you seen what they look like? That person becomes

disabled. So now I’m also going to become disabled. I’d rather become disabled and not

have both breasts then. (Participant 14)

The extract corroborates past scholarly views about society’s inability to accept that a one

breasted woman is still a whole being (Ribas 2014). It demonstrates that the noticeable absence

of a body part automatically engenders derogatory labelling. In this instance, the participant

feared that she would now be considered disabled. The notion of disability has several

connotations to it. It connotes deficiency, loss, dependence, vulnerability and other reductionist

labels. Further, it increases the likelihood of being “Othered”, hence the participant’s concern

that she would be considered a social oddity. Additionally, past researchers have noted the

haste with which breast cancer patients seek to restore normalcy by undergoing reconstructive

surgery (Rubin and Tanebaum 2011). I presume that the participant lacked the financial means

for this procedure. However, the desire to be perceived as normal was strong enough for her to

consider a measure as drastic as severing both the healthy and cancerous breasts. This radical

decision suggests that society needs to renounce its rigid ideas about the factors that constitute

a “normal woman”. In the First World there were breast cancer activists who challenged these

unrealistic ideals (Evans et al. 2014). Presently, they have celebrities who continue to do so

diligently. However, in conservative Kwa Zulu Natal, the women are not as fortunate.

Unpacking the particulars of breast cancer treatment

Thus far the chapter has detailed how participants negotiate the path from self-diagnosing

cancer to having it confirmed by health professionals. The discussion now presents the

specifics of treatment as reported by the participants. Earlier in the dissertation it was noted

that Zulu patients were known to favour traditional methods to biomedical healing (Thornton

2015; Washington 2010; (Crawford and Lipsedge 2004). However presently, they are deviating

from this pattern. In fact, there appeared to be strong averse to traditional healing for several

reasons. A commonly cited one, was the fear that its harshness was harmful to the body:

P: I have never even tried Zulu muthi. My reason for not trying Zulu muthi is that we were

told that if you are on chemotherapy, you shouldn’t drink something that’s going to expel

it. Have you noticed that when you visit a person such as an inyanga, he usually gives you

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something and tells you to vomit? As chemo patients, we are not allowed to vomit. We are

not allowed to do enemas. You are not allowed to exhaust your body because the chemo is

exhausting by itself. So, I haven’t ingested anything. It’s only now that I’m finished with it

that I’ve started drinking “Forever”. I buy “Forever”. I don’t see what it does, but I drink it

anyway. (Participant 13)

On the surface, the reasons for opting for biomedical treatment over traditional remedies are

pragmatic. Ingesting chemotherapy and then purging it out with Zulu muthi would defeat the

purpose of healing. The body of a cancer patient is usually debilitated by the disease and efforts

to combat that through treatment, place it under additional stress. Therefore, the logical choice

in this case was to select a single treatment route and adhere to it. The patient also mentioned

utilising products from the Forever Living20company. They are an international brand that is

increasingly gaining popularity in South Africa. Their commitment to using organic and natural

ingredients in products such as their health tonics, is well-known. Therefore, the participant’s

choice to integrate them into her treatment regime suggests that she wants to be gentle with her

body. She was the first woman to express concern about the severity of traditional remedies.

Overall her response indicates that the modern Zulu woman no longer subscribes to the notion

of a holistic approach to healing (Thornton 2015). It seems that the concerns about the duality

of disease causality are no longer as prevalent as they were in the past (Comaroff and Comaroff

1999; Mills 2005; Steyn and Muller 1999, Muller and Steyn 2000). Further, entreating the

ancestors to intervene is no longer imperative. Importantly, the decision to trust the doctors

who advised her to avoid combining treatments, suggests that traditional healing is no longer

an automatic choice for Zulu women. They are now more discerning about their treatment

choice. At a deeper level, the excerpt denotes a change in Zulu values. Mysticism and an

ancestral connection are not as integral to the average Zulu person as they once were. Their

identity is no longer intertwined with these philosophies.

Herbal Remedies or Herbal Dupes?

The participants who had initially been willing to consult traditional healers reported being

disappointed by their methods. Their efficacy is increasingly being questioned which is

unusual, as they have not been mistrusted before. The participants narrated their doubt-

inducing experiences thus:

20 Additional details about the Forever Living brand are available at: http://foreverliving.com/ Accessed on: 22 October 2017

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P: I have not been to an inyanga recently because I don’t believe in them. Also, I don’t want

them at all. They make disease “more”. I don’t want an inyanga. Go to the doctor, pray and

that is all.

D: Really?

P: Someone told me about an inyanga who works with bottles. He gave me empties and

told me to go to Umngeni [area in Durban]. I don’t remember the street name. Those bottles

ended up staying somewhere in my cupboard. He also told me to buy another one for R210

because it cures cancer. Ayi, I have never done that. Someone else then gave me a bottle of

powder, uh it’s called Maringa and its Indian muthi that I bought at Goramas okay? He told

me to use a teaspoon to drink it and I kept drinking it.

D: Was it at the Goramas in town?

P: No, the Goramas at Gateway where they sell spices.

D: Oh…

P: So I bought that powder and it was as if I had just done chemo. It made me sick and you

see that is what is not wanted. You shouldn’t just ingest everything

D: Where did you hear about the Goramas powder?

P: From someone who was doing chemo like me. (Participant 5)

The passage above confirms that the perceived unreliability of traditional methods is becoming

pervasive. The patient was initially keen to experiment with them. However, she hesitated.

Misgivings about the traditional healer’s lack of expertise and how that could aggravate her

illness is probably what prevented her from doing so. Further, her reluctance to purchase more

medication suggests that she may have considered the healer a fraudster, who marketed harmful

goods for money. What is interesting to note is the willingness to try remedies from an Indian

healer soon after this experience. It indicates that Zulu women do see the value of herbal

treatments, albeit not the ones that are dispensed by Zulu healers. Most significantly, this

excerpt indicates a very important shift within the Zulu community: it suggests that the

traditional healer is no longer a revered figure (Nelms & Gorski 2006; Muhamad et al. 2012;

Thornton 2015). Previous studies revealed that being a traditional healer was once a prestigious

vocation (Thornton 2015; Nelms & Gorski 2006; Muhamad et al. 2012). People considered

these men and women to be the spiritual liaison personnel between humanity and the spiritual

realm (Washington 2010). They were perceived as possessing a unique skill-set that was

imparted only to the extraordinarily gifted (Washington 2010). However, their public stature

has now declined. People such as the participant above, now consider them as unskilled

entrepreneurs who peddle potentially dangerous goods.

All roads lead to the Hospital

Other reservations about traditional healers pertain to the imprecision of their methods

(Schumaker et al. 2007; Ashforth 2005). Biomedical methods are increasingly being perceived

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as superior because they provide unambiguous information that the patient can use to measure

the disease’s progress. This appreciation for specificity is illustrated below:

P: When the doctor removes this thing, he will know that it is here, it is out now. When you

take those muthi, how will you know what is happening, whether it is truly removed? I don’t

believe in that. Anyway, in the end you can do it all, but you have to come to the hospital

whether you are afraid or not. (Participant 2)

Based on the excerpt we can deduce that some patients perceive healer consultations as a futile

exercise. They seem to believe that these visits do not provide the same measure of clarity as

their biomedical equivalent. This colossal shortcoming eventually necessitates an appointment

with a Western doctor. The criticism about the lack of rigour amongst the Zulu healer

community has been cited countless times previously (Mathibela et al. 2015). However, the

bulk of it emanated from their arch medicinal rivals, who were Western doctors. Thus, they

could have been overlooked on grounds such as their detachment from Zulu contexts and so

forth. However, the doubts are now emerging from fellow Zulus, which suggests that they may

have some merit. That being said, what is commendable about the critique is that it illustrates

that Zulus women are becoming more calculating. Previously they were stereotyped as being

docile and unassuming (Mdondolo et al. 2003). Further, the referrals to traditional health

professional were usually made by their close relatives and friends. Therefore, the realisation

that women no longer succumb to any pressure from these influential people, signifies

independence. This newfound ability to discern between treatments that are beneficial and

those that are counter-productive corroborate Dutta’s emphasis on constantly revising “taken-

for-granted-assumptions” (2008:54). Evidently, the perceptions that scholars once had about

Zulu women have evolved drastically.

Christianity vs. Traditional Healing

Christian doctrines were another significant factor that deterred patients from experimenting

with traditional healers and their therapies. Within the Zulu community, there are different

Christian denominations and their diverging stipulations affect patients approach to healing.

This is demonstrated in the extracts below:

P: You see, what I can say I’ve tried is water. The water that they say is Holy. It’s usually

at the door in Roman Catholic churches. So, if you take that and do your cross sign with it-

even in your house. Even the pastor tells us that when there is thunder, you do this using the

water [makes the holy cross sign over her chest]. That’s all.

D: So, Ma, its prayer only for you?

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P: So, you do this for everything in your life-that’s it. The Word says lift up your eyes

where? Up above. That’s it my child. (Participant 6)

P: Yes, I go to church, but I am a sayoni. I’m not an um, what you call born-again?

D: You’re not born again?

P: I am not…I will put it that way. I am not saved because I am not born again or a gospel

who is forced to avoid muthi. I am a sayoni, where if I do something like do things related

to emsamo, such as amagobongo …you see-when I do go back to church I have to be

cleansed first before I can take in church things. We worship, use water or iziwasho and so

on. I’m sure you know iziwasho. (Participant 9)

Both the extracts indicate that for some participants, the Grace of Jesus Christ is sufficient for

them throughout their cancer journey. There are practical considerations to this decision, but

they are all embedded in Christianity. The second excerpt refers to be a sayoni. This is a

division of Christians who are regarded as having stronger ties to the average Zulu individual

(Hastings 1994). What distinguishes them from other churches is their evocative songs, dances

and penchant for herbal concoctions. Conversely, other sub-divisions of this group adhere to

the trademark singing and dancing but opt for holy water over herbs. In the event that

“iziwasho” (healing composites such as powders) are utilised, they must be blessed with

copious amounts of prayer (Elphick and Davenport 1997:223). Essentially, every practice from

this group must be faith based. If not, it is no longer sacred and falls into the ‘dark realm’ of

ancestral activity. The participant’s reference to being cleansed in the event of participation in

activities related to “umsamo”, is an emphatic renunciation of a critical aspect of Zulu culture

(Hammond-Tooke 2008:64). In sum, previous studies posited that the high incidence of cancer

is possibly due to globalisation’s erasure of the protective factors that once safeguarded women

on the margins (Formenti et al. 2012 Kruger and Apffelstaedt 2007). Based on the above

abstracts, it could be argued that globalisation is vigorously erasing local cultural values. This

demonstrates that where cancer treatment is concerned, Africans are mirroring the West

(Formenti et al. 2012; Akarolo-Anthony et al. 2010). Whether or not this development is

advantageous remains unclear.

Perspectives of Treatment

Chemotherapy Opinions & Reactions

The findings above indicate that Zulu women are increasingly foregoing traditional remedies

in favour of biomedical ones. The latter treatment route has benefits that are well documented

(Oleson and O’Fallon 2012; Mondal 2015; Thornton 2015). Conversely, the challenges related

to it are seldom discussed comprehensively in cancer literature. However, they were revealed

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through the womens’ stories. Before we delve into them, it is important to re-iterate that

typically, there are three popular “lines of attack” (Pantanowitz and Benn 2002:52). They “are

surgery, radiotherapy and oncology (chemotherapy and hormone manipulation)”. Scholars in

the field recommend that the patients “breast team” use their expertise to explore the best

method to implement, based on her needs. This group should include a “surgeon, oncologist,

radiotherapist [and the] patient [who is] the most important member of the team” (Pantanowitz

and Benn 2002:61).

Overall, the patients could not differentiate between any of these procedures. In fact, they

invented their own creative metaphors in order to make sense of them. They described

chemotherapy in the following manner:

D: So, have you started chemo?

P: I finished chemo

D: How many times have you done it?

P: I did six sessions I think. Ya, six. I did them all.

D: Oh wait, is the standard six or?

P: You do 3-3, right?

D: 3-3 how?

P: You do 3, the red, they call it the devil. It’s where you lose your hair. It takes out your

hair.

D: [laughs] they call it the devil here in the hospital?

P: No. Where we do the chemo they call it the devil because your hair comes out and so

on you see? So, I think that’s why they call it the devil. Ya, so something like that. Then

the second is slightly better

D: Is that the orange one?

P: No, it’s not orange.

D: White?

P: White.

D: And then after that?

P: I was done and then they told me to come and see the doctor. But it was going well

because the lump shrank. Even though the pains were there, they did go away, at least it

shrunk. (Participant 4)

The passage illustrates that the patients understand chemotherapy only in the most rudimentary

terms. From what I could gather, the hospital allocates them chemotherapy sessions that are

spread out over several months. The chemotherapy is administered and the patients’ response

to it is monitored. The initial dosage is red in colour, and is possibly the harshest, hence it being

called “the devil” by the patients after they receive it. The white and orange follow and

probably have milder side-effects. What is encouraging to note, is that at the very least the

participant is aware that chemotherapy is intended to attack the cancer cells. Her noticing the

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subsequent shrinking of the cancerous lump is also impressive. In fact, the literature states that

“chemotherapy is successful in shrinking the cancer in over 60% of cases” (Pantanowitz and

Benn 2002: 60). However, this is the only scientifically sound information that participants had

in relation to the cancer. In fairness however, despite being an academic who actively

researches this subject, I was equally oblivious to these different colour prescriptions of

chemotherapy.

Overall, this indicates that medical personnel may need to revise their current communication

strategy. The information that they are providing presently, is simply not being understood and

retained successfully. Ideally, participants should be provided with explicit and factual details

about chemotherapy. They should be aware that it is typically prescribed to premenopausal

women, who have rapidly progressing cancer (Women’s Health Breast Cancer 2013; Fact

Sheet Breast Cancer 2014). Also, while it is extremely effective in shrinking the cancer cells

by curbing their multiplication, it is lethal to the healthy cells too (Pantanowitz and Benn 2002).

When the body is unable to produce healthy cells, even temporarily, it disintegrates rapidly.

Delicate areas such as the gut and bone marrow succumb fast to this obliteration hence the side

effects such as hair loss (Pantanowitz and Benn 2002). “When the gut cells are affected, the

patient complains of nausea, vomiting, haematemesis (vomiting of blood), bloody diarrhea etc.

when the bone marrow is involved, the red blood cells decrease-anaemia; the white blood cells

decrease; …the platelets decrease-bleeding” (Pantanowitz and Benn 2002: 61). Overall,

patients should be given a methodical itemisation of the biological facets, benefits and effects

of chemotherapy. Presently they are subjected to a mechanical recital of how their bodies will

briefly collapse under the strain. The participants described these experiences thus:

P: [there was] vomiting, diarrhoea, your skin changes, your nails may come off, you might

become bloated-some people do. They didn’t tell us about that, but some people get swollen

feet, they sweat a lot, they have insomnia, your head feels frozen as if it has been placed

inside a fridge and so on. It happens to certain people. It just depends on what your body is

like. Others are just fine. Their skin doesn’t change at all, they are fine (Participant 6).

P: Sometimes things don’t go well in my head. I wasn’t even able to hear things at a certain

point. Sometimes I wouldn’t even recognise the people that I know you see? I would just

forget them. Even my boy would say ‘your sickness is spreading even to your mind’

(Participant 9).

Overall, the side-effects of chemotherapy are mentioned, yet their full extent is not conveyed.

From my vantage point, these descriptions are glib. Therefore, patients may not fully grasp

their physical toll complete. In fact, judging by the second excerpt, the strain of the side-effects

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began to cause her to question her mental faculties. Further, based on the excerpts, participants

can be forgiven for dismissing the side-effect warnings as something that befalls an unfortunate

minority. The trauma of witnessing the physical undoing of one’s body has been documented

in the past. It is what Barbara Ehrenreich referred to as being “transmogrified into an evil

clown-puking, trembling, swelling, surrendering significant parts, and oozing post-surgical

fluids” (2001:44). That being said, the toll of chemotherapy goes beyond the physical changes.

It can also be felt emotionally. A participant described this in this manner:

P: Ooooh. As for chemo. What can I say about chemo? It is very painful because it’s what

humiliates you in front of people. It causes people to recognise that there is something wrong

with you. Because even when you try to be strong, as a woman there is nothing as depressing

as losing your hair. For your hair to fall out…

D: I understand. I once tried to dye my hair. Then it fell off and there was a ring as big as a

fifty-cent piece here [nape of the neck]. Can you imagine, a whole fifty cent coin?! It felt

like I couldn’t hide it, so in the end I cut off all my hair.

P: Well with chemo it falls off on its own. It falls off on its own, you lose your appetite, you

hate certain smells, you’re always moody even when somebody tries to talk to you nicely,

you get that feeling that you’re not alright. What’s the most painful out of everything

however, is losing the hair. I felt that deeply. Losing your hair is painful but at home they

don’t mind (Participant 7)

From this passage we can gauge that before chemotherapy, the knowledge that someone is sick

can be kept private. However, once they begin this treatment, the very drastic physical changes

that it triggers make the illness public knowledge. It subjects the patient to unwanted scrutiny

and any other reaction that people may have. They are completely at the mercy of society’s

judgement. The inability to retain one’s privacy is a powerless state to be in. Importantly,

chemotherapy triggers hair loss. It is common knowledge that hair is intimately bound to the

female gender (Khumalo 2010). Globally, women spend incalculable amounts of money on its

maintenance. Therefore, losing it translates into a loss of one’s identify as female (Khumalo

2010). It also contributes to the “cosmetic crisis”, where those who fail to reach a socially

acceptable standard of aesthetic perfection are rejected (Riba 2014: 7). As a woman myself

who has experienced involuntary hair loss, I can attest to how agonising it can be. When one

is in public, one feels as if they are under an ever-present magnifying glass. Even when people

are polite and pretend not to notice it, their discomfort is perceptible. When one is alone, one

struggles to recognise oneself in the mirror. You wonder who the stranger that resembles who

you once were, is. Overall, there is an inexorable feeling of helplessness. In my case, the hair

loss was accidental. Further, it grew back rapidly. With cancer patients, it is involuntary.

Furthermore, they lose hair all over their bodies including the eyebrows and private areas. Also,

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while it does grow back, it is only after the completion of the chemotherapy. Ideally this is a

six-month process (Pantanowitz and Benn 2002). However, given the aforementioned delays

that plague the KZN health system, this could be much longer for Zulu patients.

Is chemotherapy the only way forward?

What concerned me with the chemotherapy is that participants seemed to believe that it was

the only available cancer treatment. They were convinced that the only other alternative to

chemotherapy was death. This perception is dangerous for several reasons. The central one

being that it curtails patient’s freedom to search for other less aggressive treatments. Secondly,

chemotherapy is certainly not the only route to complete recovery (Gray 2007; Pantanowitz

and Benn 2002; CANSA 2014). Thirdly, patients are optimistic when they undergo

chemotherapy. However, this is short-lived because it is physically taxing and occasionally

ineffective. One of the participants alluded to this below:

P: I don’t know what the chemo was for because it didn’t help me, I will not lie.

D: Really?

P: It didn’t make any difference.

D: What were its side effects like?

P: Oh!! You see the red?

D: Uh?

P: I refuse. If I had to start with it again, I would cry first. The red?

D: Mmm?

P: Ayi bandla…thank you. (Patient 12)

The brief extract highlights the participant’s disillusionment with chemotherapy. Her reaction

suggests that she believes she was subjected to a tremendously aggressive, yet ineffective

treatment. Further, it suggests that had she known that beforehand, she would not have

consented to it. Overall the extract suggests that she would have appreciated being supplied

with more comprehensive information, so that she could make a fully informed decision. What

she was told did not adequately prepare her for chemotherapy. This communicative negligence

from health professionals at hospitals disempowers the patients. The extract below conveys

that:

P: We are all in one room and there are about…there are many of us.

D: Do you see one doctor every time you come?

P: Ya, but I don’t really know who he is, I just see him

D: Does he still remember you each time you meet?

P: He tries to know his patients. He knows ‘oh I remember you’. But he’s not really alone

in the office, there are other doctors. But that one is always there.

D: Do you speak to him directly?

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P: I try

D: Can you ask questions freely?

P: [Laughs]

D: What is he? Black or White?

P: He’s a Kwere -Kwere (Foreigner)

D: [Laughs]

P: What can I say?

D: Does he speak Zulu?

P: He also speaks Zulu, but you can hear what he’s saying…there are many others with

him, White doctors, Indians, and Blacks. (Patient 12)

The scenario described by the participant is not conducive to fruitful doctor-patient

communication. It demonstrates that a patient is subjected to a team of doctors who assess her

detachedly. They debate about the best treatment option for her, without her input. There

appears to be one primary physician who is assigned to patients. In this particular case, he was

not fluent in the patient’s mother tongue. Due to the language barrier we can surmise that he

was the chief decision maker, while the patient sat bewildered. This scenario is disturbing for

several reasons. Firstly, it illustrates the infantilising treatment that patients are subjected to at

public hospitals. This has been highlighted by cancer patients in older literature (Trudel et al.

2013; Thorne and Murray 2000). Their communication approach is top-down and causes the

patient to feel as if they are bystanders to their own treatment process. They must quietly

endure being observed, prodded and monitored. This is highly demeaning as they are mature

adults who are entitled to an opinion on how their bodies should be treated. Further, past cancer

researchers emphasise the importance of the patient being the key member of the treatment

team (Trudel et al. 2013). The doctors may draw from their areas of specialisation and share

their perspectives. However, this should be done in order to enhance the patient’s awareness of

the possibilities that are available to her. The final decision on the course of action to pursue

should always be made by the patient. Prioritising her in this way is the “cornerstone of patient

care” (Trudel et al. 2013:1). However, it seems to be neglected at public hospitals.

Consequences of an Infantilising Treatment Approach

The infantilising treatment that patients are subjected to, does more than alienate them. A

patient narrated a heart wrenching story that illustrates that unbeknownst to doctors, this

approach can initialise events that permanently alter their lives:

P: Then I came here [to Albert Luthuli]. Then here I found a different doctor. I didn’t find

the one who moved me here. He gave me pills and told me to take them every afternoon.

They were white. He also gave me liquid medicine that I could drop into my mouth

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D: Liquid medicine that you could drop into your mouth? What was it for?

P: It went hand in hand with these pills.

D: What type of pills were these?

P: I don’t know what the pills were, but they were small and white

D: The doctor just gave them to you and said take them?

P: Yes. He also said they would shrink the breast and allow them to take out the lump.

D: Whooo! There are pills that can shrink a breast? So that they can take out a lump?

P: Yes. That’s what he said. I would take those pills for 4 months. He gave them to me in

October, November, December, January. He then gave me 23 February as the date.

D: How did those pills treat you?

P: Ayi, they killed me my child. They killed me. My arm suddenly swelled up and became

this big [gestures with her hand]. The breast wrinkled up as you can see, that’s why it looks

like this [lifts her shirt]

D: It looks so black.

P: It’s like this, it’s like this. This thing [the black scars] rose up my arm. Here in my armpits

I developed lumps that looked like boils. I went insane from the pain that I felt. It was as if

I was mentally unstable. After that, I called a nompilo to find out if they could help me

because I was dying.

D: A nompilo is one of those health ladies who go from house to house?

P: Mmm. She said what would help me is to go to the nearest hospital. So, I went to

Osindisweni and I found a doctor who did not help me. Then I went back and found another

one because the swelling on my arm would not go down. Instead of that it was swelling up

even more. I couldn’t even wash my own panty my child. I couldn’t do anything

D: But Ma, why didn’t you stop taking them?

P: I didn’t know what would happen if I did. What helped me is that on the date of the 9th

of February, I didn’t find them at the clinic

D: The pills?

P: Yes. So that’s what eventually helped me. But by then I had already been ruined and the

date for coming here was close by. When I got here they asked me who had told me to stop

taking the pills. I said nobody told me to stop taking them, I didn’t find them at the clinic

because they were out of stock.

D: Ma, when you started taking them and noticed that your arm was swelling, why didn’t

you go back and tell them that ‘they are making me sick bakithi’?

P: The problem is that you only come here when it’s your date. When I called to ask, I found

out that here you only come on your date. If it’s not your date, the doctor won’t see you.

D: What kind of doctor was that? Were they White, Indian or Black?

P: He was Indian.

D: Was he speaking through a nurse?

P: Yes

D: Did he speak to the nurse, who would then speak to you?

P: Mmm

D: Are you able to speak to the doctor and say I’m not alright here? (Participant 7)

This exchange between the participant and I provide a glimpse into the horrors that occur due

to the patriarchal approach to cancer treatment (Thorne and Murray 2000; Schulzke 2011).

Firstly, the chief doctor in the patients “breast team” dispensed medication without fully

divulging what it was for. He exercised his authority over the patient and made an executive

decision on her behalf. This is despite being aware that the likelihood of never interacting with

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her again, was high. Therefore, there was a possibility that he would not be able to monitor

how the medication would interact with her body. Secondly, there was language gap that

restricted the patient’s ability to fully understand what the medication was for. The paltry

details that filtered down to her via the nurse, indicates that it was potent, and its purpose was

to dramatically alter the size of her breast. Thirdly, when her body responded adversely to the

pills, the professional who prescribed them was absent. So were the rest of her “breast team”.

The medication aggravated her body and caused health problems that were not there before.

Despite being gravely ill, she then had to utilise her own resources in order to remedy the

damage that occurred as a result of the misguided prescription. There are numerous conclusions

that can be drawn from this case. However, the glaring ones are as follows:

Firstly, the constantly alternating medical teams that attend to patients is problematic. It hinders

the development of trust in the doctor-patient relationship. Cancer is a terminal illness that has

inconsistent effects on each patient. Therefore, while it is understood that hospitals in the

country are resource poor, the rotating professionals make achieving gold standards of

treatment unattainable (Stefan et al. 2013). Patients would probably appreciate some degree of

constancy during the course of treatment. Importantly, the interchangeability of doctors makes

accountability challenging. If he or she takes action that amounts to medical malpractice like

we see in this participant’s case, he or she cannot be disciplined effectively. The knowledge

that there are no consequences in the health system, is completely disempowering to patients.

Secondly, the doctor caused permanent bodily defects to the patient through his negligent

prescription. The patient was already “fighting a cancer battle” (Koffman et al. 2013:354; de

Boer and Slatman 2014). However, the doctor caused her health issues to intensify. His casual

prescription of mysterious pills underscores the impersonal nature of doctor-patient

relationships. His behaviour suggests that to him, the participant was not an intelligent human

‘being’ under stress. It indicates that she was a human ‘cog’ in the health system that needed

to be processed. Overall, the patient has to fight two battles: one with an illness that is ravaging

her body and another with a health system that cavalierly intensifies them through negligence.

Thirdly, this narrative demonstrates that a patient’s voice is completely unheeded at public

hospital (Dutta 2008). A medical doctor completely renders it inaudible. He or she dictates the

remedial course of action, which is respected by all and sundry within the hospital walls. A

patient must then accept it. The disregard for the participant’s voice can be detected by the

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chastisement the patient was subjected to, when the medical staff believed she had stopped

taking the pills without seeking permission first. Despite their exacerbating her illness, their

main concern was to ascertain the reason for her violating the doctor’s authoritative voice. Her

physical well-being was secondary to that. Further, the hospital system prohibits patients from

voicing concern without a doctor’s expressed permission to enter the hospital grounds. Further,

even during actual consultations, the nurse must translate the doctor’s prescription to the

patient. On the surface her role is to be the medium that facilitates fruitful dialogue between

the two parties. However, due to the top-down nature of these encounters, it is the doctor’s

voice that is prioritised. If these conditions make a patient too self-conscious to speak even

through a translator, then she is unapologetically muted.

Fourth, the literature indicated that when traditional doctors were preferred, patients willingly

trusted them (Muhamad et al. 2012; Muller and Steyn 1999). This trust was tendered without

reservation, because the nature of the consultations supported the full expression of the

patient’s desires. Further, they encouraged communal participation, which meant that the

patient was surrounded by emotionally supportive people. Currently Western methods are

depicted as the only viable treatment option. However, based on the participant’s story,

Western professionals operate through a flawed system. One such malfunction is the

aforementioned inability to honour the patient’s voice (Dutta 208). Also, judging by how the

patient had to fend for herself when the doctor’s prescription nearly killed her, the system is

painfully isolating. Based on these realities, I would argue that patients now have surrender to

their doctor’s will. The trust is no longer issued voluntarily. It is forged by fear and other

challenges that are engendered by the unfeeling hospital system.

Fifth and perhaps most important, the participants complete adherence to the doctor’s

catastrophic prescription signifies the presence of the Black inferiority complex that Fanon

(1963; 1986) alluded to. Her inability to question the doctor’s wisdom after he prescribed

medication that in her words almost killed her, indicates the presence of fear of some

unfathomable consequence. The doctor was Indian and not White. However, the caste system

that South Africa operated, under always conveyed that Black people were the lowliest of all

the race groups. Therefore, this particular participant may have been afraid to challenge the

doctor on that ground. It is disturbing to note that these psychological handicaps pervade public

hospitals 24 years into democracy. They need to be rectified because evidently, they can

literally be deadly.

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Is there a purpose to chemotherapy?

The data analysis phase revealed a disturbing pattern. Literally every woman that had

undergone chemotherapy, inevitably had a mastectomy or was scheduled for one. The

participants that concerned me the most were those who had followed all the prevention and

treatment recommendations. Despite the belief that they are a group that demonstrates low

adherence to “recommended breast cancer screening guidelines”, they had detected the cancer

early and sought treatment promptly (Sadler 2007:2). Despite being transferred numerous

times to health facilities that are dispersed across KZN, they persevered. They did not miss a

single hospital appointment. Even when their resources were limited, they managed to be

present. Even when the effects of chemotherapy caused the physical deterioration of their

bodies, which gradually infiltrated their private lives, they completed all the sessions.

Therefore, I was as perplexed as they were, at their eventual breast excisions. All of us were

functioning under the delusion that chemotherapy is intended to eradicate cancer. Its efficacy

is allegedly enhanced if the toxic cells are diagnosed at an early stage (Gray 2007; Women’s

Health Breast Cancer 2013; Fact Sheet Breast Cancer 2014). In fact, clinging to these so called

‘scientific facts’, had motivated the participants to endure the onerous side-effects of

chemotherapy.

Drawing from these facts and the details from the narratives, I would assert that the massive

time lapses interfere with the prompt commencement of chemotherapy. In this way, they

become a titanic cause of mastectomies. When chemotherapy is eventually initiated, the

cancerous cells have multiplied to a degree that renders it ineffective. The doctors are then

forced into a position where they can either salvage the patient’s breast or her life. Typically,

they opt for the latter. Overall, I would argue that there is an urgent need to prioritise the

initiation of chemotherapy in order to increase the likelihood of its effectiveness. Given its

severe side-effects, I would argue that there is a moral obligation to ensure that this is done.

Logically we can deduce that it is inhumane to subject an ailing person to that level of stress,

with the awareness that time delays could render the treatment unsuccessful.

Financial Implications of Chemotherapy

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The interviewees indicated that the side-effects of chemotherapy were not confined to their

bodies. The devastating effects extended into their livelihood. Several ladies were forced to

resign from their places of employment after beginning the treatment:

P: Ever since I found out, I haven’t been able to do anything. My life stopped. I can’t even

find a job.

D: Hawu, were you working?

P: Yes. I was working at Richards, a hotel. But because I couldn’t handle scents anymore

once I started chemo, I took the decision to stop until I was done

D: So right now, who is supporting you financially at home?

P: My mother (Participant 22).

P: The person who used to try and get money at home is me.

D: Where were you working?

P: I was working at the factory. A clothing factory. The ‘chemo’ doctor even wrote me a

letter for the pension.

D: Pension for what?

P: I told him that I don’t work anymore (Participant 20).

The excerpts illustrate that chemotherapy results in participants being both physically and

financially dependent on others. Both participants were financially viable women prior to it.

However, they could no longer be productive afterwards. It should be noted that chemotherapy

is portrayed as the most effective treatment option that is available (Women’s Health Breast

Cancer 2013; Fact Sheet Breast Cancer 2014). However, the havoc that it wreaks in patients’

private lives is seldom discussed. The irony of one’s life being destroyed by a course of

treatment that is intended to improve it, should not be overlooked. In the first extract, the

participant is fortunate to have an alternate source of income, who is her mother. However,

commencing chemotherapy has resulted in a cessation of life, as a contributing member of

society. Evidently, this “new normal” is challenging for her to accept. The second participant

was not as fortunate. She is the sole breadwinner in her household. Therefore, her

chemotherapy- induced physical deterioration affected her capacity to provide for her

dependants. Had she not disclosed that fact to doctor, she would not have been made aware of

the availability of a cancer grant. Overall, there are two important realisations that should be

noted from both excerpts. The first is that chemotherapy creates a dual dependence on the state

and its resources. Patients depend on it for healthcare and financial support. Secondly,

chemotherapy is essentially an internal physical implosion, with effects that are felt externally.

In some instances, the patients have a network of people who support them through this. In

others, the women must navigate through the turmoil on their own. They are the ones who need

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additional support and should be made aware of the existence of resources such as cancer

grants.

Surgery Perspectives

The discussions above alluded to the inevitability of mastectomies. The older breast cancer

scholars unanimously emphasise that this is a traumatising experience for the patients involved

(Doh and Pompper 2015; Opoku 2012; Grimes and Hou 2013; Kingham et al. 2013). However,

the participants of this study had mixed reactions. I noted that the women who were over the

age of forty were more amenable to it than their younger counterparts. The latter group

expressed several valid concerns:

Shortage of competent (plastic) Surgeons

A 30-year-old participant expressed her ambivalence towards the prospect of a mastectomy

thus:

P: I did the chemo, but it didn’t decrease it in the way that they had expected, and they were

forced to do the operation. Then they wrote me a letter to go to Ngwelezane. At Ngwelezane

they said they couldn’t operate on me because it was too big. They then sent me back here.

They had said that if they did the operation themselves, they would leave it open like that.

So, I said I couldn’t do that. I couldn’t allow that. I said they couldn’t leave me open like

that because-

D: Hold on Sisi what do you mean? So, they would open you up and-?

P: They would remove the breast

D: Remove it?

P: Yes, my whole breast would be removed. They would remove it completely and I

wouldn’t have it. So, I said they couldn’t open me up like that and they should at least allow

me to go to the doctor in eThekwini to hear what he has to say, because if you open me up

like that I still have to go back home. At home, I have a child.

D: How old is he?

P: He is nine. He is a 9-year-old boy. He is still trying to process the fact that I am sick. He

can see my breast changing. So now when I come back with a wound that will stress him

even more because he’s already stressed by my constant departures. There are days when I

am not there at home. There are days when I am there. I’m sick. I’m lying down, I’m getting

up and all that saddens him. So, I said please don’t cut it yet, let me wait and hear what the

doctors in Durban have to say. If they also feel the same way, then you can open it, remove

what you can and leave what you can (Participant 4).

The excerpt indicates that the participant underwent chemotherapy, however it did not attain

the anticipated results which was to eliminate the cancer. Therefore, the doctors opted to

contain the possibility of it metastasising to dangerous levels with a mastectomy. What is

important to grasp with the rest of her narrative, is that the doctors disclosed that they did not

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know how to perform it in a “cosmetically acceptable” manner (Pantanowitz and Benn

2002:66). This means that instead of neatly excising the breast and making the area conducive

to reconstruction, they would leave a gaping wound on her chest. The hospital that she visited

is one of the smaller facilities in the KZN province and they were candid about their lack of

skill in this area.

What we can gather from the narrative is that the scarcity of proficient surgeons is grimmer

than we can imagine (Kingham et al. 2013). If the best that hospitals can offer their mastectomy

patients is a bleeding crater on their chest, then older researchers’ miminised the severity of the

skills-shortage. Further, there is clearly a medical knowledge deficit amongst the doctors. This

is evidenced by their willingness to discharge a patient with a cavernous chest wound, while

the possibility of infections is there.

What can also be discerned from the extract is that KZN public hospitals do not avail breast

conserving surgery options to their patients. Research indicates that:

in Europe 75% of patients in the better centres get breast conserving surgery or mastectomy

with immediate reconstruction…no longer are breast cancer patients rushed to surgery on

the day of the diagnosis, but extensive planning with the entire cancer team is undertaken

so as to give the patient the best outcome. With increasing frequency, pre-operative

chemotherapy and radiation therapy are being used so that breast cancer surgery can be

achieved with good cosmesis (Pantanowitz and Benn 2002: 66).

Essentially, European women have a breast team that helps them to chart their cancer treatment.

There is a concrete map in place that documents viable avenues for them to explore. Each step

is navigated gradually with the understanding that the patient’s appearance and by extension

her life should not be radically altered by the cancer. Drawing from the participant’s story, it

appears that KZN women are not granted this privilege. Her excerpt indicates that there was

never any effort to conserve her breast. There were various conservation options that could

have been made available to her prior the mastectomy. The fact that such discussions did not

occur, suggests that there was never any intention to perform them. The treatment strategy was

centred on radical treatments such as chemotherapy and removal. Further, European women

are privileged with a multifaceted team that probably includes both surgeons and plastic

surgeons (Rubin and Tanebaum 2011; Riba 2014). Based on the participant’s story, we now

know that KZN women are not as fortunate. The hospital’s resources only grant them surgeons

(with varying skills). This suggests that the budget only caters to procedures that are regarded

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as necessities. Evidently, the amputation of an intimate body part is prioritised. Its restoration

is dismissed as a cosmetic extravagance.

Notably, the narrative indicates that the toll of a mastectomy is also borne by the patients’

family. Public hospitals appear insensitive to that reality. They operate under the misconception

that the only person who suffers the loss of a breast, is the patient. Evidently, the loved ones

suffer vicariously through her. They may not feel the physical pain of the surgery. However,

their pain is probably more acute, since it is accompanied by a pervasive sense of helplessness.

At a logical level we can infer that watching a loved one undergo an illness that is as physically

strenuous as cancer and not knowing how to alleviate some of the tension, is dreadful. We can

also presume that this guilt is worse amongst children. We gauge through the narrative that

despite the participant’s best efforts to protect her nine-year-old from absorbing the heaviness

of her illness, the little exposure that he received affected him greatly. Therefore, witnessing

his mother as she nursed a seeping chest wound, would have been more traumatising.

Practical Mastectomy Considerations

The younger participants’ responses indicated that the removal of a breast should not be

dismissed as a mere physical change. For them, it translates into widespread loss. One of them

stated the following:

D: How do you feel about the possibility of having your breast removed?

P: I don’t like it but what can I do? I don’t like it, I won’t lie.

D: Are you afraid?

P: I’m afraid. I am really afraid of it and I’ve actually had a lot of stress. You know when I

had to come to the doctor for him to tell me the date, I became so sick that my siblings said

I need counselling. Now that they’ve said there are no doctors, I’m very happy I won’t lie.

D: You’re happy.

P: I’m happy. I don’t care. I continue to take my pills. Also, I don’t know what can be done

to assist us other than to have our breasts sheared off. I mean really, can you imagine that

thing?

D: Another lady told me that they can create one that is artificial here at the hospital.

P: So now what? What happens when you sleep with that artificial breast? You sleep and

on one side you have your breast hanging and on the other there’s nothing? Can you imagine

taking your clothes off around your friends? Imagine that confusion? Say you’re wearing

your bathing suit or your bra? Ayi no man, let’s stop lying to each other. (Participant 26)

Essentially, the participant was dreading her impending mastectomy because it would unsettle

her life. For her, the procedure would not be a minor excision of an organ, but an erasure of

normalcy (Rubin and Tanebaum 2011; Riba 2014). The mundane tasks that she previously

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undertook carelessly, would now require more consideration. Whereas before she could

effortlessly change her clothes, she now cannot do that without arousing curiosity. Nor can she

wear bathing suits without eliciting similar reactions. The latter part of her excerpt connotes

her frustration at how the aftermath of a mastectomy is minimized. She is upset by the lie that

the removal is an unremarkable endeavour when it creates massive complications for the

woman who experiences it. Her observations are accurate and older literature has highlighted

the dramatic life inversion that mastectomies cause (Ribas 2014). Audre Lorde for instance,

highlighted the more inconvenient aspects of life as a one breasted woman (Ribas 2014). She

recognised that this invisible segment of the population faces a unique set of challenges. Lorde

found that the prospect of fitting into one’s clothes was daunting because they are not intended

for single-breasted women (Ribas 2014). The fact that fashion retailers do not cater to this

group intensified the discomfort. In sum, this participant’s response demonstrates that women

who have undergone mastectomies need professional help in order to adjust to their new reality.

They need an outlet where they can express their concerns and have them validated instead of

trivialised.

Dissatisfaction with Public Hospitals

The interviews revealed that the younger patients harboured some disenchantment with the

health system. They articulated it thus:

P: It’s for them to help us. I know that they said there is nothing more they can do to help,

but they must try hard. We are appealing, shame.

D: What type of help?

P: In terms of staff members and they can do more than remove our breasts. Can you imagine

that girl? Our beauty is in our breasts. They must stop playing with us. I’m enraged. I’m full

of rage. I’m fed up. I’m fed up for real now. Because if someone tells me…they found this

thing last year, but it’s been there for a long time. It’s not as if it started lasted year. I’ve had

it for a long time and kept coming to them. So, when a person tells me that they can’t operate

on it because there’s no space, what am I supposed to do? What am I supposed to do? Wait?

If I wait and then they tell me that it’s spread somewhere else? (Participant 11)

P: It’s awful. They don’t care about us. They don’t care. Do you see the chairs?

D: Yes

P: There’s a granny who is bleeding. Her breast is bleeding

D: I think I saw her. It looks big

P: It’s bleeding. Nobody cares about here. She shouldn’t be sitting in front of people because

everybody who passes by looks at her. They don’t care. Even the doctors. Even if you tell

them that I feel pain, it’s painful and this thing is rotten. Can you imagine being rotten while

you’re alive and how painful that is? They don’t care about us. I won’t lie. They don’t care.

I can’t say they help us with anything. You sit like this and then they call you. You see the

doctor for 2 minutes while he looks and looks at you. Sometimes he doesn’t even ask you

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to undress. He just looks at you, looks at your file and tells you to come back on a certain

day. What’s worse is that your breast is rotting and when it’s rotten, we can’t sit like this

and talk. It smells. Firstly, you are ashamed of the fact that you have cancer, then you

become ashamed of the fact that your breast is rotten. Whenever you show up, people hold

their noses. They hold their noses like this when you show up. So, they don’t care for us.

I’m not going to lie. They just don’t care for us. (Participant 22)

The first extract highlights the participant’s frustration with the health system due to its failure

to improve the treatment options that it avails to breast cancer patients. She believes that efforts

at investigating options that do not include disfiguring and robbing them of a body part that

defines them as women could be intensified (Schulzke 2011; Rubin and Tanebaum 2011).

While she did not expressly state this, I surmised that she believes that hospitals do not consider

breast cancer a priority. In her view, the existing harsh treatments they offer are expedient for

the staff who prefer to devote their expertise to other “critical” diseases. Furthermore, her

response highlights her belief that the hospital system is defective. Patients such as herself

conform its guidelines. Despite this, they are neglected until the cancer grows to an

unmanageable extent. When this happens, they are dismissed by the medical staff who claim

to not know how to remedy the issue. Overall, we can discern the intense sense of

powerlessness from the participant. Evidently, she feels that the health system purports to offer

assistance to women in her position, only to derail their efforts to reclaim their health. The

concerns about the marginalization of cancer as an urgent health concern, have been noted by

researchers before. In South Africa where the financial resources are exhausted by HIV/AIDS,

this sidelining is more marked (Stefan et al. 2013).

The second extract demonstrates how hurt the participant is by the apathetic treatment they

receive at hospitals. She is greatly wounded by how anaesthetized the staff members are to

their pain. Her disappointment is twofold: Firstly, her expectations of receiving adequate

medical care were not met. She expected the hospital staff to take measures to assist a patient

whose breast was emitting blood while she sat on the benches. She anticipated that someone

who was experiencing this uncontainable level of physical stress, would have been prioritized.

However, the nurses were unperturbed despite it being their professional duty to assist in such

instances. Secondly, the participant is appalled at the blatant lack of empathy from the nurses

to the patient (Amador et al. 2015). She expected them to go beyond feeling for her as a patient

and to feel with her as a person. At a human level there are certain experiences which should

equalize us all. These include our self-esteem needs and our efforts to maintain them,

particularly when we are in public. Therefore, the fact that the nurses have immunised

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themselves to the shame that patients feel when their bodies reek in public, is painful for the

participant to witness. To a degree, I shared the participant’s concerns. During the interviews

I had noticed that the number of nurses on duty, was smaller than the patients in the cancer

ward. They seemed considerably overwhelmed. Therefore, I attributed the emotional

detachment they demonstrated towards the patients to exhaustion. By that point I had read

Razack and Fellow’s (1998) work on competing marginalities. This refers to the belief that our

unique set of challenges are greater than other people’s (Razack and Fellows 1998). Overall,

the nurses appeared to believe that the responsibility of managing an enormous ward of sick

people was greater than the patients’ frustration at sitting ‘idly’ on the benches.

Ukwamukela and the Mastectomy

As mentioned above, the older participants demonstrated a great degree of ukwamukela

(acceptance) towards the mastectomy process. When asked to describe their feelings towards

it and the manner in which the news was communicated to them, they responded as follows:

P: No, lying is bad. I have not seen any bad treatment. It’s just that I’m the one who can’t

hear because it’s usually an Indian, maybe White doctor. Then there’s an Indian nurse also.

So, we are not educated, we don’t know English.

D: So, the nurse has to translate?

P: Eh heh. Sometimes she doesn’t translate until the doctor steps in and lets out some Zulu-

nyana and sometimes I can hear. Sometimes I don’t hear. Right now, ayi… they said they

will cut the breast. Both of them.

D: How do you feel about that?

P: Ayi I don’t care. I see a lot of people who don’t have them-the breasts, but they are alive.

D: You don’t have a problem?

P: Ai. I left my house so that the doctor’s will can be done. He must apply his knowledge.

That’s why I left my house. I can’t leave my house and then be a dictator. I am the one who

wants to be helped and not the doctor am I right? (Participant 22)

From the passage we can gather that the vital details of the participant impeding mastectomy

were lost in translation. Evidently, the nurse’s translating skills must have been weak if a first-

language English speaking doctor felt compelled to intervene. Thus, we can infer that the

patient received the gist of what to expect, as opposed to comprehensive information. Her

nonchalance towards the procedure is motivated by two factors: firstly, she has seen others who

have undergone mastectomies surviving. In this way, she is convinced that there her life will

continue normally after she undergoes it. Once again, we see the impact that positive role

modelling can have on strengthening efficacy beliefs (Bandura 1995; 2004). The second factor

behind her serene disposition is the confidence in the doctor’s expertise. It is disturbing to note

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because she appears wholly acquiescent to the doctor’s dictates. The participant is from the

pre-democracy era. Therefore, I interpreted her attitude to be an indication of an innate

inferiority complex that Black people are said to have (Fanon 1963). Being raised in an era

where they were flogged into succumbing to their oppressor’s will, they learned to live a life

where they cowed to everyone who shared his skin colour (Ranuga 1960). They learned to be

content with the notion of being visible yet unseen and unheard (Steyn 1998). This conditioning

was methodical and therefore enduring. Were this not the case, then the patient would have

asserted herself and had an opinion about the removal of both her breasts. Further, the comment

about her silence on account of being the one in need, signifies her perceived secondary status.

In fact, her complete unawareness of the poor delivery of the mastectomy news suggests that

she has been conditioned to accept mediocrity. Ideally she should be conscious of her worth as

a person and her rights as a patient within a system that has instituted policies, that are intended

to protect her. The operation is fairly drastic and could have numerous unintended

consequences. Therefore, her inclination to meekly undergo it, signifies her fear of the

‘authoritative’ White ‘expert’ (Ranuga 1960). Furthermore, her complete submission

corroborates Sen’s (2009) observations about the illusion of autonomy where underprivileged

people’s functioning is concerned. Sen (2009) alluded to the hypocrisy in steering people

towards a specific direction and then claiming that the choice was entirely theirs. In this

patient’s case, the doctor would probably have no qualms with stating that the patient chose

the mastectomy after being fully informed. This is despite the fact that the details of the

operation were diluted by the insipid translation. Overall, it seems that health practitioners are

now obliged to be conscious of patients’ historical background during mastectomy

conversations. It can influence their comprehension (or lack thereof) of the procedure.

Another senior participant who was agreeable to the mastectomy, substantiated her decision

thus:

P: I finished with chemo last week and today I’m here to see what the doctor will do with

the breast. It will depend on what he feels, whether he will remove it or what

D: How do you feel about that? You seem calm?

P: Believe in God. I believe in God. I am hoping that they will remove it because if they

don’t, they will keep burning it until I stop paying attention and this thing might start again.

However, if they remove it, it might mean that it’s gone, and I still have time and I will live.

That’s what I’m hoping for.

D: You have no problem with them removing it?

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P: Eh, eh. What am I going to do with it? What am I going to do with it? What can you do

with something that can possibly kill you someday? It’s better if it dies (Participant 29, aged

66)

The passage reveals that the participant was not yet confirmed to undergo the mastectomy. Yet,

she was hoping that the doctor would do so. Evidently, she believes that removing the breast

will prolong her life expectancy and she is invested in living. For her, the removal of a breast

is an equitable trade for a longer life. Further, at 66, she was not breast-feeding, nor did she

have a romantic partner. Therefore, she probably saw neither the utility nor the cosmetic appeal

of her breast. Of all the participants that were interviewed, she was by far the most cheerful.

From our session I attributed her buoyancy to her Christian faith, and the strong support from

her family. Her narrative further confirmed the fallacy that is the fatalistic black cancer patient

stereotype (Forte 1995; Taylor 2001; Sadler 2007). Most importantly however, it demonstrated

that cancer patients can withstand the effects of the disease if the aforementioned factors are

present. In fact, they can surpass survival and flourish whilst in the throes of the disease.

Breast Reconstruction

Out of the thirty ladies that were interviewed, only one of them had passable knowledge of the

breast reconstruction process. This is alarming because ideally, patients who undergo a

mastectomy should be given the option to reconstruct immediately (Pantanowitz and Benn

2002). In fact, the health department’s policy document specifically states that this should be

discussed prior the operation (Breast Cancer and Prevention Policy 2017). This does not mean

that patients should be coerced into the procedure, in order to seal a physical or emotional void.

It means that they should be aware that a reconstruction team is available to them. That being

said, the participant expressed her view of the procedure and breast merchandise that the

hospital avails to them:

P: they do give us a sponge. So, you can put that to even it out

D: Do you get it for free here?

P: Yes, you get it for free, but it’s a useless thing because it’s a sponge [mxim] it’s been

sewed and sewed. It’s just to even things out so that when you are dressed, somebody will

think you are alright, but no you are not. They had said that after the operation if my stitches

heal well, they would give me a fake one, but I don’t like it.

D: What kind is that?

P: They will put it-this skin right here will be opened. You see this thing where someone

goes to pump up their breasts?

D: A boob-job?

P: Eh heh. They would give us a boob job. But I don’t like it.

D: Would they do it for free here at the hospital?

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P: It was ridiculous.

D: Oh wait, so there is that option

P: It’s there. It’s there. They do have a small one that they put in you, but then you can tell

it was done at a government hospital.

D: You don’t trust it?

P: It’s not something that looks beautiful. I have seen it on another girl who they had done

it too. It wasn’t something that looked beautiful. It looks-I sometimes think it causes you

even more pain. I said to myself that I would rather not have it than to endure that pain. She

said it was painful because they had to reopen where they had operated in order to put in

this thing. But the other patients I usually sit with who don’t have this thing, say that once

the stitches have healed, there is no pain.

Firstly, we gather that the participant is dissatisfied with the breast pads that the hospital

supplies to them. They are intended for use in the brassiere, where the excised breast would

have been. The idea is to give the wearer the appearance of an even bust. While the hospital

must be commended for distributing this product freely, it is clear that their wearers are

unhappy with them. The participant refers to them as “sponges” which creates a mental image

of cheap, soft wadding. Evidently, it is a poor substitute for the lost breast. It probably could

have sufficed had more effort been exerted towards making them more aesthetically pleasing.

In fact, in their present state the breast pads were an affront to the participant. She felt that the

hideous design was a mockery of both herself and her lost breast. Her reservations are valid

and were shared by famed breast cancer activist, Audre Lorde (Ribas 2014). In fact, Lorde

created a clothing line that was designed specifically for post mastectomy ladies (Ribas 2014).

She too was disheartened by their invisibility in fashion. It is a well-known fact that females

value their appearances. It becomes a higher priority after cancer mars it. However, society

seems oblivious to how direly breast cancer survivors require additional assistance with

recovering the beauty that was momentarily lost.

The latter portion of the participant’s response conveys her reservations about the surgeons’

expertise. After seeing how negligibly they performed the reconstruction on another woman,

her doubts were heightened. She is convinced that their dubious technique inflicts even more

physical pain. Further, from what I could gather, she felt that the surgeon’s tawdry work was

due to his perception of state hospital clients. The majority of whom are Black. Therefore, the

disregard that he has for them, resulted in him not crafting a beautiful new bust. The

participant’s observation implies that she feels marginalised due to her skin colour and her

inability to afford private healthcare. Evidently, her subalternity has several levels to it. Overall,

her perspective illustrates that there are ample negative connotations that are attached to public

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hospitals. Whether they are acknowledged or not, they are transferred onto the patients and

influence the manner in which the personnel render health services.

Palliative Care

The literature section indicated that palliative care is typically reserved for patients who are at

the end of their cancer journey (Women’s Health Breast Cancer 2013). At this stage, every

feasible healing measure has been applied with dismal results. The objective at this point is to

ensure that the patient is comfortable and pain free. The health department’s policy states that

it is constantly revising and amending its stance on the delivery of palliative care (Breast

Cancer Prevention and Control Policy 2017). Despite this, each version of this document

emphasises two important points. Firstly, it encourages health facilities to be cautious with

their dispensation of pain medication in order to reduce the likelihood of addiction (Breast

Cancer Prevention and Control Policy 2017). Secondly, it states that hospital staff should rally

the patients’ family members together. Their support is of vital importance (Breast Cancer

Prevention and Control Policy 2017).

With this background in mind, it was disappointing to note that the policy’s stipulations are not

always adhered to. The narrative that follows will illustrate this. It was recounted by an 82-

year-old woman from Jozini, which is approximately 398.3 kilometres (4 hours and 37

minutes) from Durban. Prior to the interview she was a spectacle on the hospital benches

because of a tumour the size of a watermelon on her chest. The mass had countless smaller

cysts that were protruding from it. Some of them were bleeding through her pinafore while she

waited unattended. Overall, it was a grisly yet distressing sight. She said the following:

P: These are the pills and they don’t want to send them to me. So, at the end of every month,

I have to come and fetch them.

D: You fetch them here [at Inkosi Albert Luthuli]?

P: Yes. I fetch them here and I sleep at Ngwavuma (Hospital). I don’t know what these ones

are [pulls out several pill bottles and inspects their labels]

D: I also don’t know them.

P: Panados, panado’s, they keep giving me panados. They don’t want to give me these ones

[pulls out a different pill bottle]

D: Are you here by yourself?

P: Yes, I am here by myself. Makoti came here once. Once. They showed her the machines

and I think she spoke to the doctor. She came only once, and she never came back again.

D: Do you come here with a bus?

P: I take a taxi to Babanango. From Babanango I take a taxi to Ngwavuma (Hospital).

D: Wow. That is so far.

P: And the money??!!! Imagine the money I spend.

D: So, what are you here to do today?

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P: Each month when I get my pension I come back to fetch these pills.

D: You have to fetch the pills?

P: Yes

D: Oh. They don’t put you under machines anymore?

P: Eh?

D: They don’t put you under machines anymore? Have you done the ‘chemo’?

P: Yes, I used to do it. It took out my hair. It all comes out. Even your pubic hair comes out.

You are delaying me child. The bus will leave me.

D: Thank you for talking to me today.

P: I am also happy to talk to you. I live because of God. I have also found some Sintu

medication.

D: Oh, what is it called? How did you find it?

P: There’s somebody who works at Ngwavuma (hospital).

D: A nurse?

P: No, she cleans. She said there is an imbiza. So, I will take my pills. And then when I get

to Ngwavuma, I will take it home. I will drink it and drink it and by the end of the month

this [the tumour] will be gone [laughs]. (Participant 11)

The passage reveals several disturbing facts. Firstly, an elderly infirm woman has to travel an

expansive distance in order to receive pain killers. It is important to note that although the

distance she travels is estimated to be five hours, this is only accurate if one is using one’s

private vehicle. This particular woman has to cover this distance via public transport which

includes buses and taxis. Further, these vehicles have to stopover at specific points, she must

disembark and board others that will eventually leave her at IALCH. She must navigate this

journey despite being in a severely deteriorated physical state. Importantly, she was weighed

down by the gigantic tumour on her chest. She persevered by herself as nobody from her family

was willing to make the monthly journey with her. They did so only once and left her to her

own devices afterwards. To complicate her challenges further, she depends solely on her

pension to support her.

The most appalling aspect of her story is that she was wholly oblivious to the palliative nature

of her treatment. None of the professionals she encountered informed her that there was nothing

further that could be done to improve her condition. They continuously prescribed Panados

which are mild pain killers and then sent her back to Jozini. Evidently, failing to disclose the

full details of a diagnosis, however tragic, is medical negligence in its highest form. It is also

unethical as it misrepresents the severity of the stage of her illness. This woman utilised the

little resources at her disposal and persevered through various challenges because she believed

she was being cured. She was completely unaware of the fact that at that stage her body was

gradually declining. The physical strength she had left, should have been preserved. However,

it was expended on futile long-distance trips to fetch painkillers that are available at any

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neighbourhood store. In her case, IALCH failed her tremendously. They withheld valuable

information from her thus violating her right to be informed. Further, they flouted the policy

rules by denying her access to certain medication without an explanation (Breast Cancer Policy

2017). Evidently, it was vitally important to her wellbeing, if she was prepared to travel far to

receive it. Additionally, they did not actively recruit a support system to ease her into accepting

the finality of her treatment (Breast Cancer Policy 2017). Instead, they participated in

subjecting her to public scrutiny and judgement. The health policy states that women in her

condition should have designated helpers who ensure that they complete their treatment (Breast

Cancer Policy 2017). This is particularly emphasized for women with inadequate resources.

Drawing from the literature I would posit that this case is another compelling example of the

healthcare system impeding the subaltern’s capability to function fully (Sen 2009; Robeyn

2007). The woman concerned possessed the required emotional resources. She was resilient

and resolute in seeking healthcare. In fact, her reference to a new course of healing that she

was about to embark on, demonstrates her hope for full recovery. Had these attributes been

combined with a functional and caring health system, her survival chances could have been

higher. Further, she was completely marginalized discursively (Dutta 2008). The reasons for

withholding vital information from her remain unclear. To a degree, her inability to demand

information that she was entitled to, indicates that her inferiority complex was rearing itself

again (Fanon 1963/1986). Overall, based on the inaction of the staff members who were

present, I presume that patients with similar experiences are commonplace. While the neglect

that she was subjected to is probably related to structural inadequacies such as an exhausted

skeleton staff, it is still unacceptable.

Logistics and Travel Arrangements

The constant patient referrals across various healthcare facilities has been discussed. It

necessitates a demanding travel schedule for cancer patients, particularly those who live in the

remote parts of Kwa Zulu Natal. However, the discussion around it has been brief. It is

important to examine it in more depth, in order to convey the extent of the effort that women

exert in their quest for healthcare. A participant from Harding, which is 194, 8km (2 hours and

10 minutes) from Durban elaborated on their travel schedule:

P: I have two children, I buy food, but I need to travel here. When I leave home to go to the

hospital in Harding, its twenty-four rand. Right now, it’s late, so I have to stay overnight but

when I go home it’s another twenty-four rand. Addington [Hospital] is better. Here….

Think about it, I arrived here at six.

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D: So what time did you have to leave home in order to get here at six?

P: We sleep in the hospital and we leave there at four. We sleep on the floor at the hospital

D: You sleep on the floor?

P: Now we sleep in the wards, but before we slept on the floor. So they would shift some of

the patients and we would sleep. Then at three we would wake up and bath. At four the bus

leaves and comes here you see?

D: At three?! You get up and bath?

P: Or at two. So, we would sleep for a very short time. At quarter to or half past two, you

get up, bath and get dressed. You do everything, and you prepare your things. At three you

go downstairs and sit at OPG along with many others. They call your names, you get packed

lunches and the bus arrives and you go.

D: You get packed lunches?

P: Yes shame, they give them to us

D: Do they come from the hospital?

P: Yes

D: What are those lunches like?

P: Two slices of bread. And an apple. You put it in your bag and go. Then you find a place

to sit and eat your lunch. (Participant 20)

Evidently, patients who do not live within proximity of Inkosi Albert Luthuli Central Hospital

need to plan ahead for their hospital appointments. It appears to be an exhausting endeavor that

entails sleeping on the floor of their neighbourhood hospitals, before they are transported to

IALCH. From there, they must undertake their ablutions alongside strangers. While the state

provides certain resources in order to enable them to get to IALCH in Durban, they are

inadequate (Breast Cancer Prevention and Control Policy 2017)). Patients are still required to

utilise some of their own financial resources. Participant 20 for instance revealed that it costs

R65 to open a treatment file at the hospital. Then there are other seemingly minor expenses,

such as the aforementioned R24 taxi fare to and fro. These amounts gradually increase over the

course of their treatment. Overall, Zulu women have logistical constraints as an additional

encumbrance to their healthcare. Therefore, they experience a decided disadvantage when

compared to their Western counterparts. This group do not have to suffer indignities such as

sleeping on hospital floors. They have the liberty to channel all their emotional resources

towards a recovery.

CANSA Awareness

The strain of travelling long distances is only one constraint that impedes access to healthcare.

The participants highlighted several other challenges that occur due to their being situated far

away from Inkosi Albert Luthuli Central Hospital (IALCH). One of their other concerns was

feeling neglected by the KZN Health Department and other associated health care

organisations. This shared feeling of being forgotten emerged when the question about their

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awareness of CANSA was posed. CANSA is arguably the most prominent non-profit

organisations that is devoted entirely to the cancer cause (CANSA 2014). The answer to the

question would indicate whether Zulu women are conscious of other social structures that are

geared towards their well-being. However, only 5 out of the 30 participants had glimpsed

CANSA briefly. One of them said the following:

P: I know that they (CANSA) are around

D: But firstly, where did you see them? Did they come to your community?

P: No! On TV. They don’t ever come to our community! We don’t know them in my

community. You see all these organisations that are here at Albert? I’ve never seen them at

our hospital. Even you, who come to us to talk, you won’t come to Empangeni. Are you

going to come to eMpangeni?

D: [shakes head]

P: You will finish here at Albert but how many people need you at Empangeni? There are

many people. The entire Empangeni region from Nongoma to e Nkandla, all of them go to

eNgwelezane [Hospital]. So, when we have cancer, we all gather there and only then does

Ngwelezane send us to the hospitals at eThekwini (Durban). There are many of us. I know

them (CANSA) from TV. You’ll find that at special times, such as when there’s cancer

awareness, then you will see them on their bikes, their balloons and pink T-shirts. Also,

even on social networks there are posts. So that’s when I see them. When it comes to what

they do, when, and at what time, I don’t know. That’s usually the end of it. And there’s

nothing that happens after that. (Participant 12).

From the excerpt we can deduce that the participant has an elusive idea of CANSA. Her

response intimates that they emerge from obscurity at specific times of the year in order to

promote themselves and the cancer cause. We can also gauge that she feels that she, her

community members and other cancer patients are alienated from benefiting from organisations

such as CANSA. She believes that such entities reserve their outreach efforts for people who

live in urban areas, particularly those that are in the city of Durban. The participant also

mentioned the social media presence of CANSA. Logically we can deduce that digital access

is not feasible for the older, less technologically savvy breast cancer patient. Many of them are

barely literate, therefore it is highly unlikely that they are active on digital platforms. Thus,

while CANSA’s social media efforts are commendable, realistically they are beneficial to a

younger demographic of cancer patients. Importantly, the participant believes that this inability

to access support structures applies to numerous other services. This is illustrated by her

reference to my research efforts being limited to the hospital. This particularly participant was

incredibly vocal throughout the interview and she seemed appreciative of the opportunity to be

narrate her story. Despite my informing her that I was an academic and not a counsellor, she

approached our encounter as if it was a therapy session. She repeatedly highlighted the need

for the integration of therapeutic services in the hospitals treatment strategy.

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Overall, her interview and her quote above indicate that Zulu women are eager to be vocal

about cancer. However, their lack of proximity to central Durban forces them to remain silent.

There is the perception that the city of Durban is the central hub of critically needed health and

communication facilities. However, their rural location relegates them to the sidelines and they

cannot participate as much as they wish. Essentially, the participant’s point corroborates

Dutta’s (2008) observations about the effects of geographical exclusion. On the surface it

appears to hinder people from receiving adequate healthcare. However, there are additional and

equally bothersome detriments such as communicative marginalization (Dutta 2008). Even

when people have a deep yearning to engage on the health issues that devastate them, the

channels where they can be heard are absent. As a result, their unique perspectives are never

expressed. Consequently, they are represented by “elite” members of their race and gender

groups who may miss the nuances of their experiences (Ramphele 1990). Or, their views are

substituted for the distorted interpretations of First World scholars. Essentially, there is a

globally pertinent conversation about Black cancer patients, without them. Black Zulu women

are unheeded at a regional level. Therefore, the prospect of being heard at a global level is

unfathomable at this point.

Counselling for Cancer Patients

There have been several fleeting references to counselling throughout this chapter. However,

its importance needs to be reiterated because several patients mentioned their great longing for

it. A patient had the following to say on this matter:

D: Do you go to counselling?

P: I go sometimes.

D: Where?

P: They do have it here (at Inkosi Albert Luthuli). It’s not available at my hospital in

Ngwelezane. When you come here, that’s where you have the opportunity to get counselled.

Personally, I don’t think that is right. We should have counselling at Ngwelezane. Because

last week, we had a funeral nearby my house. We were burying another girl who was also

coming here. She just passed, hers was in the head. All that made me feel very sad. But what

can I say? I have to wait until I get here in order to find a counsellor. Even then, you find

that you’re already irate and reluctant to wait [in the queues]. Everything is delayed

(Participant 7).

The excerpt reveals that some of Kwa Zulu Natal’s rural health facilities do not offer

counselling services. Cancer patients can only access them if and when they are transferred to

Inkosi Albert Luthuli Central Hospital. In this way, the patient has to manage the complications

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of the disease and other life events that intensify its effects, by themselves. These repressed

emotions can only be released during their consultations at IALCH, which are often delayed

(Dalwai and Buccimazza 2015). While they are at their local clinics, they must process the

stress by themselves. Firstly, this is another example of geographic marginalisation (Dutta

2008). More importantly however, it is disappointing to note that breast cancer counselling is

not as highly prioritised as that of other terminal illnesses. If an individual seeks an HIV/AIDS

test for instance, pre and post counselling sessions are enforced. People are required to undergo

them irrespective of the HIV test results. In fact, according to the (KZN Health Annual

Performance Plan (2017/2018: 42):

Counselling and testing outreach campaigns have been undertaken across the province and

implementation of provider initiated counselling and testing (PICT) actively pursued

targets… [The] Hlola Manje Zivikele campaigns21 have been conducted in all districts

supported by media mobilisation campaigns “Test for HIV atleast once a year” through local

radio stations and the First Things First campaigns to ensure sustained and accelerated

counselling and testing

Further, some of the questions that are asked prior to receiving the outcome relate to the

availability of a support system. Therefore, it is unfortunate that diagnosed cancer patients are

not offered the same degree of therapeutic support. This finding corroborates the claims about

the bulk of the South African health budget being siphoned by HIV/AIDS (Stefan et al: 2013).

Further, breast cancer appears to truly be a disregarded health threat. The scant regard that

counselling receives is also depicted in the health department’s revised policy. After perusing

this document conventional counselling is barely mentioned. Instead, great attention is given

to “genetic counselling” which concerns itself with testing women who have a genetic

disposition for developing cancer (Breast Cancer and Prevention Policy 2017:33). While the

availability of this service is commendable, it is novel and geared mainly towards women with

a family history of breast cancer (Breast Cancer and Prevention Policy 2017:33). This excludes

the incalculable number of existing cancer survivors. Overall, there is a cavernous void for

counselling in Kwa Zulu Natal’s existing healthcare strategy and urgent efforts to fill it should

be made.

21 Translates into “Test Now, Protect Yourself” in English

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Final Remarks from the Patients

The final question on the interview schedule required the participants to recommend the

changes they wished to see at the hospitals and amongst the health professionals. The responses

were diverse. Some of the ladies declined to comment. Those who chose to speak highlighted

the lack of empathy and a passion for people amongst health care workers (Amador et al. 2015)

The following excerpt is probably the most compelling entreaties for the aforementioned

qualities:

P: What I will say to you is that if you are doing this because you love it, you will know

how to help people. But if you’re doing it because you didn’t know what else to study then

forget it. This requires you to love people. Your talking to people shouldn’t change even if

you become a doctor of this thing. Don’t be busy all the time when I need help. If I come to

you needing help, make time for me, be patient. I know that being around a sick or smelly

person is unbearable. But we also need your time and your patience. You need to have time

and patience. I know that you might get someone who is irate and fed up one day but keep

doing your job from love. Know that the person is sick. When you know that the person is

sick, you will be able to help them. Because with cancer, we need a lot of help. People are

angry out here. And they have anger because they are sick, but you need to help them. They

will be angry, angry at you, but you need to help them. You didn’t infect them with this

illness, but they will still be angry. You need to be calm, you need to be humble. Then you

will see your work. You will see it and when you see it, that’s when you’ll realise that I

didn’t waste my time studying. Because I know that studying is nobody’s friend and working

with people is nobody’s friend. You see working with people? Ayi it’s nobody’s friend

because while you’re interviewing people like this, somebody will walk in and take out their

frustration on you and you’re not a doctor or a nurse. The person might be angry because

you met them and sent them away. Then they will tell you that you come here and ask us

questions that have nothing to do with us. They forget that you are a student and you don’t

know. If you are humble. When you work with people you must be humble. You must be

very humble because being sick is very painful. It causes irritation. You just become irate.

Even if you try to pretend to be fine, the fact that you are sick always comes back to you.

D: Even if you try to be strong-?

P: Eh heh…It’s just painful. It needs someone who has time and patience and not someone

who is in it for the money. We know that you need money and you need to support people

at home. But you need to have love. Have love only. Don’t say ‘this person has a wound,

what should I do with them?’ Even when you do see that they have a wound and there is

nothing you can do for them, just pretend with them, it helps because we know that we are

being lied to anyway. We know that at the end, cancer is incurable, it can only be managed

not cured. It’s incurable, it’s just manageable Sisi. Right now, they can heal my breast but

after 2 or 3 years they will detect it in my uterus until my time to die arrives or something

else kills me. But it’s not curable. With me they told me that after the operation, I will have

to take pills for the next ten years

Essentially, love for people and their wellbeing is the “cornerstone of healthcare” (Trudel et al.

2013:1). Evidently, if love is the primary motivation for working in healthcare, it will translate

into the treatment of the breast cancer patients. It will enable healthcare personnel to endure

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the more challenging aspects of working with gravely ill people. When love allows

professionals to remain empathetic despite the hardships, it ceases to be an occupation. Instead,

it becomes their life’s calling. The excerpt reveals that the patient is conscious of the demands

that come with healthcare work. However, she urges those who choose this path to rise above

them. Her words indicate that the health system contains people who are at their most

vulnerable both physically and emotionally. Their deterioration creates an uncontainable rage.

This often erupts onto health professionals, despite their not having caused it. She implores

them to be aware of this prior to choosing healthcare as a career. When they inevitably

encounter it, she suggests that they rely on the love that initially inspired them to pursue

healthcare careers. They should not retaliate with the same animosity that is being

demonstrated by their hurting patients. Further, she cautions healthcare professionals to be

sensitive to their patients varying levels of physical deterioration. They must approach them in

a manner that affirms them as people and ensures that their dignity is uncompromised.

Findings in Relation to the Study’s Objectives

The chapter has presented and discussed the pertinent components of the participants’

narratives. This latter portion evaluates those themes against the study’s main objectives. The

goal is to highlight the accomplishments that were attained from embarking on this doctoral

journey. The first key objective was stated as follows:

1. How does culture influence the definition, detection, reporting and treatment of breast

cancer (umdlavuza wamabele) amongst selected Zulu women?

This question has several facets which will be addressed individually. With regards to the

influence of culture, it can be included that Zulu breast cancer patients are increasingly

adopting a Western approach to life. Consequently, their healthcare practices are emulating

those from the West. In terms of the definitions that they use to describe breast cancer, I

discovered that despite having a Zulu term for the disease (umdlavuza wamabele), the

participants did not utilise it at all. They chose to reference its English equivalent which by

comparison, is limited as it is broad and applicable to all cancers. Umdlavuza wamabele

specifically refers to breast cancer. Even the more senior participants whose Zulu was not as

diluted with English as their younger counterparts, opted not to use the Zulu adjective. This

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language preference could be further confirmation of their gravitation towards Western

practices.

Secondly, Zulu women employ breast self-examinations (BSE) to detect the presence of breast

cancer. This practice does not belong to any cultural group. For the Zulu, it is merely a reflexive

action that is undertaken when suspicious changes occur on the breast. However, the trend of

formalising BSE’s by offering guided tutorials on how to perform them (as CANSA has done),

was popularised by Western health practitioners. Gradually, it has filtered into South Africa

and has become a highly advocated recommendation. Once again, this illustrates the Zulus

increasing conformity to Western-inspired health directives.

Thirdly, the findings demonstrated that Zulu women prioritise seeking Western doctors to

report their cancer suspicions. The only exception to this pattern relates to the senior

participants with recurring breast cancer strains. When they initially suspected that they might

have the disease, they reported it to traditional healers. The second time around, they opted to

forego them in favour of Western doctors. Most significant of all was the discovery of their

resounding partiality towards biomedical treatments over traditional options. Every single

participant expressed cynicism towards the latter healing field and its practitioners. This was

influenced by the waning beliefs in the efficacy of their methods and the unprofessionalism of

the traditional healers. While the sample is too small to generalise the findings, it does indicate

a marked shift in perceptions. Most significantly, it highlights a desertion of a once integral

figure within the Zulu community. Further, the duality to healing disease still exists. However,

it is now understood in terms of the physical/medical as opposed to the physical/ancestral.

Overall, Westernisation has diffused into Zulu culture (Nelms and Gorski 2006).

The second key objective was as follows:

2. How do Zulu women experience and explain breast cancer (umdlavuza wamabele) in

their everyday lives?

The findings demonstrated that in many ways, breast cancer is an elusive disease (Pal et al.

2015; Daly et al. 2015). Zulu women have a somewhat abstract comprehension of it that is

fuelled by their communities, the scant information provided by health professionals and brief

media coverage. After they are diagnosed with it, this confusion intensifies. Once the treatment

begins, they experience the cancer as a physically tortuous affliction that is carried alone

(Koffman et al. 2013). In some instances, this isolation is self-imposed. In others, Zulu women-

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particularly the senior ladies- have a deeply ingrained obligation to be stoic (Cooper and Mullin

2001). Therefore, they retreat into themselves as a protective measure. During these physically

demanding times, they are extremely emotionally vulnerable and in dire need of psychological

support. To be more specific, they require some form of talk therapy. They are usually afraid

to express this need; however, it is there. The few ladies that were fortunate enough to be

surrounded by supportive people struggled to articulate their breast cancer discomfort.

This hesitancy is due to several reasons: Firstly, they do not fully understand the changes that

are occurring in their bodies, nor the reasons for them. The imprecise advice that they

occasionally receive about the physical changes that they need to anticipate, does not fully

prepare them for their onslaught. In fact, their enormity pales in comparison to what they are

told. This unpreparedness inhibits their expressiveness towards loved ones who are eager to

assist. Secondly and perhaps most importantly is the fact that medical staff do not acknowledge

the emotional impact of breast cancer. It is not even negligibly discussed. Therefore, the women

have to repress themselves because they do not feel entitled to their feelings. I discovered that

being diagnosed with breast cancer is initially not shameful. However, actions such as the

wilful resistance to the emotional stress that it causes, contributes to the taboo stigma around it

(Bell 2014). Lastly, the younger Zulu women experienced breast cancer as a condition that was

detrimental to their physical appearance and their identity as women. In sum, this group of Zulu

women experienced breast cancer as physically invasive, emotionally turbulent, publicly

damaging and reductive to their quality of life. Further, the chaotic hospital environment and

the perplexed relatives who surround them at home, are not conducive to therapeutic breast

cancer talk.

The third key objective was as follows:

3. What do “breast cancer narratives” by Zulu women reveal about the influence of culture

on breast cancer health theory and practice?

The narratives revealed that Zulu culture is rapidly evolving. Two decades ago, the majority of

the Zulus were conservative and deeply superstitious (Forte 1995; Wright 1997). Presently,

their beliefs are more flexible, and their spirituality tends to be influenced more by Christianity

than the (abaphansi) ancestors (Washington 2010; Crawford and Lipsedge 2006). That being

said, the Zulu cultural context has several constant factors. These include the use of their native

tongue, the high regard for certain cultural norms such as ukuhlonipha and Ubuntu (Rudwick

and Shange 2009; Samkange and Samkange 1980; Cornell and van Marle 2015). Further, their

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combative spirit remains intact. This is evidenced by the tenacity that they demonstrate as they

seek healthcare. Certain problem areas such as poverty and an inability to access certain health

services persists. Unfortunately, the current health theory and practice does not reflect these

challenges. Further, it does not accommodate the alterations that occur within the Zulu cultural

fabric.

The current breast cancer theory is geared towards English-speaking patients. The material that

is availed to Zulu breast cancer patients reflects that language preference. It is supplied to them

probably due to the assumption that English is a globally known language. In reality, it is

foreign, particularly to millions of uneducated Zulus who live in an impoverished South

African province. The available literature seldom considers the magnitude of illiteracy on this

cultural group. Furthermore, healthcare professionals are exceptionally culturally insensitive.

They render health services in an apathetic manner that compromises the patient’s dignity. No

efforts are made to adhere to Zulu propriety. Further, the professionals do not adapt their

approach according to age distinctions and so forth. All the participants are subjected to the

same medically competent yet impersonal care. I earnestly believe that compelling the

professionals to undergo some form of sensitivity training could enhance their understanding

of the Zulu cultural setting. Mandating the training could help them to stay abreast of the

changes and to possibly pre-empt new ones. Further, their overall approach to their patients

could become more participatory. Overall, their services would be more beneficial if they were

more context-appropriate.

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Chapter Six

Synthesised Conclusions & Opportunities for Further Study

The previous chapter produced edifying insights into a selection of Zulu women’s experiences

of umdlavuza wamabele (breast cancer). This chapter advances these findings by refining them

even further. The objective here is to provide a concise synopsis of the challenges that were

reported and their effects on both the women and the health facilities that they mentioned. From

there, recommendations for improvement will be explored. Additionally, opportunities for

further empirical study will be briefly examined. This chapter’s discussion points are derived

from a combination of the main themes that emerged from the participants’ narratives and the

literature on which the study is embedded.

Breast Cancer Information Scarcity

The knowledge deficit is a perpetually cited impediment to breast cancer consciousness and

treatment (Newman et al. 2015; Dickens et al. 2014). In preceding chapters, it was submitted

that this lack is spectacularly salient amongst African patients (Abuidris et al. 2013; Brinton et

al. 2014). The narratives revealed that this limitation is indeed present. However, they also

indicated that the notion of patients being responsible for their incognisance of breast cancer is

misguided. Zulu women genuinely yearn to acquire accurate breast cancer knowledge. Their

stories indicated that breast cancer is initially an opaque subject due mainly to its social

indiscernibility. In South Africa, there is a shortage of organisations and interventions who

work at publicising it. The entities such as CANSA that attempt to counter this invisibility,

utilise avenues that are accessible to a minority of patients (CANSA 2014). These include

written material, which is only useful to literate individuals, with an excellent command of

English (Women’s Health Breast Cancer 2013).

Secondly, the awareness endeavours are dispersed through mass media such as social networks,

television and radio. Disappointingly, details about specific programmes that are devoted to

cancer were missing. The mainstream media outlets appeared not to have media personalities

who discuss breast cancer, nor were there designated time slots. Further, while participant

mentioned that they had minor exposure to breast cancer the specificities concerning the

availability and frequency of this information were unclear. Notably, CANSA appeared to be

the sole promoter of this content. What this suggests is that in a province with a population as

vast as that of Kwa Zulu Natal, there is no tangible coverage of breast cancer (CANSA 2014).

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Further, despite its best efforts, the principal cancer advocacy group is inaccessible to Zulu

patients, particularly those who are above the age of 35. Further, while CANSA documents

highlight their outreach efforts in KZN’s secluded areas, the findings indicated that they needed

to be drastically intensified (CANSA 2014).

Furthermore, when Zulu women eventually become aware of breast cancer, their information

seeking efforts are thwarted by several obstructions. The main one is the unprofessionalism of

the staff that they encounter at various health facilities. The nurses and doctors are the first and

for many, the sole source of breast cancer knowledge. However, the uncongenial treatment that

they subject patients to, inhibits substantial knowledge exchange. When the patients first

interact with them, they are eager to acquire as much information as possible in order to

effectively contain or combat breast cancer. However, the medical staff are often ill-equipped

to be vessels of knowledge. The narratives indicated that the core cause of this incompetency

is that they are overburdened. The patient-doctor ratio appears to be grossly high. As a result,

the staff are unable to deliver health services that are in accordance with gold standards of

healthcare (Breast Cancer Prevention and Control Policy 2017). They resort to treating the

patients as bodies that must be removed from the hospital benches and processed out of the

system.

Thirdly, the lack of concrete cancer information was exacerbated by the language barrier

between the doctors and the patients. The patients are seldom treated by one doctor. Therefore,

they inevitably encounter physicians who do not speak Zulu. These vital interactions are

typically mediated by translators with dubious skills. Thus, the information that filters to the

patients is fragmentary at best. Furthermore, the atmosphere in the consultation rooms is

intimidating due to the fact that the Zulu women were conditioned to demonstrate ukuhlonipha

(Rudwick and Shange 2009). Adherence to this custom prohibits them from questioning

authority figures, particularly when they are male. Furthermore, South Africa’s apartheid

legacy continues to thrive in their psyche and is a constant reminder of their subaltern identity

(Guha 1981, Chakrabarty 1985). Perceiving themselves as inferior further constrained them

from posing questions and receiving useful information

Recommendation: Counselling Services

Based on the narratives, counselling services are a key strategy that could be implemented in

order to enhance breast cancer awareness. In fact, I would argue that counselling should be

mandatory for every breast cancer patient across all health facilities in the Kwa Zulu Natal

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province. A study participant mentioned that it is available exclusively at Inkosi Albert Luthuli

Central Hospital (IALCH). The likelihood of this being accurate is slim, however, it indicates

that the availability of this service is not explicitly communicated to the patients. If they are

unaware of its existence they cannot utilise it. Therefore, efforts to notify patients should be

strengthened. My justification for the implementation of obligatory counselling services are as

follows:

Breast cancer is a volatile illness that creates physical and psychological plateaus (Daly and

Olapade 2015; Doh and Pomper 2015. Its treatment typically causes the body to gradually

degenerate before improving again. In some instances, complete recovery is impossible, and

the patient has to accept the measured, but painful physical deterioration. In others, healing

does occur. However, by then, the patients has lost either one or both of her breasts. Often, this

magnetises a multitude of unprecedented effects for her and her family. Therefore, counselling

is critical in order to assist the patients with processing the changes.

Secondly, the narratives revealed that the patients are brusquely bombarded with the news that

they have a life-threatening illness. The answers to the critical questions that they have, filter

to them haphazardly over the course of their treatment. This information is typically relayed

with a team of professionals present. As aforementioned, this setting is not conducive for

meaningful dialogue to occur. However, mandatory counselling sessions would alleviate this

discomfort. The patients could pose questions and receive answers that are personalised for

their unique cancer experience. Further, the counsellor would be proficient in Zulu which is

their Mother tongue. In this way, the sense of ineptness that comes with attempting to articulate

oneself in a foreign tongue could be eliminated.

Thirdly, the narratives revealed that the families of women with breast cancer volunteer their

support to them. However, they are unaware of the specific needs that must be met. Through

the narratives we were able to gauge that patients undergo a myriad of emotional fluctuations.

They include fear, rage, helplessness and eventually acceptance. In some instances, these

emotions are unintentionally projected onto the bewildered relatives. Therefore, offering

therapeutic services could aid the patients with reflection and measured processing of their

emotions. They could have a sanctuary where they express them at each stage of their recovery

until they reach a point of catharsis. In the long term this could help them to contain the

emotional detonations they unleash onto their relatives. Further, they could be better equipped

at guiding them on how to respond to their emotional needs.

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Furthermore, counselling is compulsory for patients with preventable diseases such as HIV

(Annual Performance Plan 2017/2018-2019/20). It is also offered to people irrespective of

whether they seek it during routine health checks or out of necessity, such as pregnancy.

Generally, its standard availability is widely-known. The narratives revealed that breast cancer

patients are not as fortunate. HIV’s depletion of the health budget is also well-known (Reddy

et al. 2017; Grover et al.2017). Whether consciously or otherwise, this sends the message that

diseases such as breast cancer are lesser priorities, which is problematic. It is unbecoming of

the KZN Health Department to perpetuate the myth of a caste system where disease is

concerned. There is a responsibility to provide quality healthcare to everyone in the KZN

region. Therefore, mandating counselling services could combat the aura of insignificance that

surrounds breast cancer. Such an initiative could perhaps elevate it to the same social status as

HIV.

Recommendation: Onompilo (Healthcare Workers)

The participants also highlighted the need for Onompilo (community healthcare workers) who

could dispense breast cancer information (Coovadia 2009; Friedman 2002). Onompilo are

trained healthcare workers who visit homes directly. They are particularly popular in the

townships or the rural areas where people struggle to access information about diseases.

Disappointingly, onompilo seem to be associated with educating the masses only on HIV/AIDS

(Coovadia 2009; Friedman 2002). However, utilising their services could be advantageous to

the breast cancer cause. Firstly, it could bridge the knowledge gap between health professionals

and Zulu people, particularly the more elderly members of this community. Furthermore,

Onompilo could ensure that both the patients and their families are equipped with valuable

information. In this way, the cancer burden is shared as opposed to being borne solely by the

sick person. Additionally, onompilo could stimulate conversations about breast cancer. This is

important because the narratives suggested that the stigma which envelops patients can be

attributed (atleast partially) to the mystique around the disease (Bell 2014). Therefore,

initialising forthright dialogue about it, could irradiate it. In this way cancer patients would

cease to be social anomalies. Instead, they could be regular people, who are experiencing a

severe but curable illness.

Resolving Delayed Referrals

The narratives revealed that the referral of patients from one health facility to the next is an

agonising process. This seemingly standard pattern delays treatment. In fact I would go as far

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as stating that this administrative challenge is the chief cause of breast cancer metastasis

amongst Zulu women. I would posit that improving referrals by accelerating them, would

decrease the progression of cancer to incurable stages. Notably, the KZN Health Department’s

new policy attributes the slow referrals to “poverty and financial challenges” (Breast Cancer

Prevention and Control Policy 2017). It alleges that patients are often unable to shift to the

next level of healthcare because they lack transport money. While this may be true, the

narratives revealed that the referral system is inefficient even when patients have sufficient

resources.

Recommendation(s)

Evidently, the delays which frustrate the patients’ efforts at receiving healthcare are an internal

issue. The narratives suggest that they are caused by the healthcare system’s inability to process

the volume of patients who require healthcare. The long-term solution would be to increase the

number of medical staff who can attend to them. However, the short-term solution would be to

improve the administrative service who manage the database with the patient’s information.

The narratives revealed that administrators are responsible for scheduling appointments and

referring the patients to the relevant facilities. Therefore, if there could be measures that are

implemented in order to monitor that they rapidly accelerate these process, the delays could be

reduced.

Exploring various Breast Cancer Treatments

The narratives indicated that drastic treatment options are typically favoured by KZN’s

physicians. Chemotherapy and mastectomies were almost automatic prescriptions for the

ladies. The reasons for this disturbing trend were unclear, but it could be speculated that the

high volume of breast cancer patients is burdensome for health facilities. Therefore, processing

them promptly appears to be the primary goal for many physicians. Thus, the aforementioned

procedures are the most pragmatic measures for achieving it. The participants reported that in

hindsight, they would have declined these procedures because of their severity. However, they

were confounded by the scarcity of other effective cancer treatments. Essentially, they are at

the mercy of predominantly male physicians, who speak a foreign language and are too

overburdened to discuss less aggressive treatment options.

201

Recommendation(s)

The main remedy to the aforementioned challenge is to inform breast cancer patients about the

availability of alternative treatments. These would need to be defined lucidly, in order for them

to make a fully informed decision. Further, the physicians should commit to taking tentative

steps to healing. To this end, they could place greater emphasis on breast conserving treatments.

Presently, cancer patients are not informed that such procedures are available, hence their

disorientation after diagnosis. Notifying them would expunge the object-subject relationship

that they have with the doctors. Further, the patients would be integrated into the treatment

conversations instead of being passive observers. This involvement could potentially alter the

inferiority self-concepts that they appear to have.

Further, the current version of the breast policy states that all breast cancer patients should have

a designated “breast cancer nurse or patient navigator” whose role would be to “provide

treatment and management information and psychological support from the time of diagnosis

and throughout women’s treatment journey” (Breast Cancer Prevention and Control Policy

2017: 60). Therefore, all of KZN’s facilities now have an obligation to ensure that they adhere

to the policy’s dictates. The involvement of the navigators would be invaluable because

according to the policy “women who receive quality support have improved physical and

emotional outcomes” (Breast Cancer Prevention and Control Policy 2017: 60).

Additionally, I would posit that if the patient navigators were female, it would modulate the

dominance of male doctors. The conservative nature of the Zulu has been mentioned countless

times throughout the dissertation. It is often compounded by the cultural obligation to

demonstrate ukuhlonipha, particularly towards males. From this we gather that breast cancer

patients are always at a disadvantage when they are being attended to by male doctors. These

interactions limit their expressiveness. We can then infer that being assigned a female health

practitioner would amend the power imbalances. Further, the breast is an intimate part of the

female body, therefore, discussing its cancer-induced changes may probably be easier with

other females. Overall, there could be a greater sense of connectedness between Zulu cancer

patients and same sexed-patient navigators

To add to this, it might be prudent to compel all doctors to undergo some form of sensitivity

training (Fallowfield et al. 2001). The narratives exposed the profound lack of cultural

ineptitude that they demonstrate towards the participants (Dutta 2008). While it may not be

intentionally malicious, it is detrimental to their wellbeing. For instance, the participants lacked

202

tangible information about breast cancer, the treatment options and so forth. It is the

responsibility of the attending doctor to dispense this critical information and to clarify possible

confusions. However, they shirk this obligation. Other examples of the doctors obliviousness

to the import of culture is their inability to communicate with their patients in Zulu. While this

may not always be possible, particularly if the doctor is of foreign descent, they still have an

obligation to ensure that patients exits the consultations with firm comprehension of the

treatment approach for them as individuals. The women mentioned that the doctors typically

peruse the files which chart their cancer history. From there, they address all communication

to translators with varying abilities. From my vantage point delegating the task of conveying

delicate information is improper. It is a duty that should be fulfilled by the doctor because they

can decipher the scientific jargon of each cancer case better than any translator.

Also, improving their communication skills could enhance the trust relationship that is

currently non-existent between the doctors and the patient. The narratives revealed that

initially, patients bestow infinite trust onto their doctors. However, the constant communicative

exclusion gradually corrodes it. By the latter stages of treatment, they are disillusioned and

resigned to the reality of being physically present, yet unseen. Logically we can gather the

alienation that arises when a stranger does not acknowledge your existence while he is treating

such an intimate part of your body. We can imagine how disempowering it must be to grant

such a person unrestricted access to it, because you have no other alternative. We can further

imagine the intensity of this discomfiture for the more mature Zulu ladies who may not be as

liberal as their younger equivalents. Thus, concerted efforts to communicate effectively with

patients could restore the impaired trust bonds.

Multifaceted Communication Approach

The narratives also revealed the one-dimensionality of the current communication strategy that

is employed by IALCH and the referring health facilities. Overall, it is predicated on literacy.

This variable is a “taken-for-granted” assumption (Dutta 2008:54). In reality however, it is a

luxury that is not accessible to all Zulu cancer patients. In the previous chapter I briefly alluded

to the fact that the older Zulu ladies are severely disadvantaged by this “pro-literacy bias”

(Melkote and Steeves 2001: 233). Therefore, their inability to read or write in general is

compounded by the scientific jargon that is utilised in the cancer publications that are

distributed to them. This confusion is exacerbated further by the fact that the bulk of this

material is written in English, which is a foreign tongue.

203

Recommendation

IALCH and its affiliates should probably consider incorporating a more inclusive and culturally

appropriate communication strategy. Older health communication scholars have speculated

that “perhaps, a narrative strategy that contextualises information in the form of stories,

anecdotes and cases” may be a more viable alternative (Petraglia 2009:180). This may make

more of an indelible impression on Zulu patients because “non narrative (i.e., propositional)

techniques are useful in attracting attention and delivering information, and may even prompt

reflection, but they do not offer the opportunity for people to engage with the message and

consider all the ways in which the information functions in real life” (Petraglia 2009:180). So,

the cancer leaflets that are given to patients initially capture their attentions because they are

eager to learn more about the disease. However, their being written in a foreign language makes

it impossible for the patients to extract information that can aid them in their real-lives.

Furthermore, past research indicates that generally, South Africans are not voracious readers

(Pretorius 2008). However, we do have a solid reputation, as great storytellers. “Even in places

where there are no cinemas or the internet, we find songs, drama and storytelling” (Durden and

Nduhura 2003:3). This animated strategy has succeeded in engaging people and retaining their

attention. The information manages to resonate with them because it is conveyed in a relatable

manner that does not trigger any insecurities around illiteracy. Storytelling has proven itself to

be a unifying communication mode, while reading is clearly an alienating one. Therefore, the

IALCH and its associates may wish to consider employing the former, since the latter is not

attaining the anticipated results on its target audience.

Financial Aid

The narratives highlighted the financial burden that Zulu women bear as they endeavour to

treat breast cancer. The constant travelling to multiple health facilities across the region are

financially taxing. If the duration of the treatment is drawn-out, the costs increase further. They

become more exorbitant if the side-effects of chemotherapy compel them to forego

employment completely. Some of the participants mentioned that they were the bread-winners

in their families. Those who were not, automatically became dependent on their families for

financial support. Overall, a significant reduction of finances is synonymous with breast cancer.

204

Recommendation(s)

Based on the narratives it appears offering financial support to Zulu breast cancer patients is

legally mandatory. Currently it is available in the form of a monthly grant. However, very few

patients are aware of its existence or the process that must be undergone in order for the funds

to be released. This financial illiteracy needs to be rectified urgently. Ideally every health

facility in the KZN region should provide information about the financial resources that are

available. In this way, the financial strain of breast cancer can be alleviated slightly.

Opportunities for Further Study

The adoption of a narrative approach has effectively yielded revelatory information. That being

said, in the future many of the themes that emerged should be examined separately. This study

successfully brought them to the fore. However, it would be advantageous to health

communication practitioners and the field if there was more empirical inquiry into them. To

this end, the diversity of Zulu breast cancer patients is an area that warrants further

examination. This study has revealed that they are not a strictly homogenous group. The

commonalities that they share are undeniable. However, so are their vast differences which are

seldom acknowledged by researchers and healthcare facilities. Some patients are in their early

twenties, others are middle aged and still others are pensioners. Further, some have strong

Christian beliefs, others have declining faith in Zulu ancestors and others lack tangible spiritual

convictions. Also, some ladies are technologically savvy and others are not. Most importantly,

they are battling cancer with varying financial and emotional resources. Consequently, the

structural challenges that burden the health system affect them differently. The ladies with

better means can cope better. Those with lesser means struggle. Therefore, studies that account

for all these differences could potentially be ground-breaking as they are non-existent

presently.

Secondly, the displacement of Zulu traditional healers as esteemed healthcare practitioners was

highlighted through the study. They once rendered care that addressed disease holistically

(Thornton 2015; Mathibela et al. 2015). However presently Zulu patients now appear to favour

biomedical practitioners. The narratives suggested that this shift has left a massive operational

vacuum that Western doctors are struggling to seal. Presently they appear are ill-equipped to

handle the influx of Zulu speaking patients and their unique needs. For instance, the concept

of Ubuntu and the strong community support network is absent in their healthcare strategy.

205

Therefore, future studies could explore the effects of these changes. It would be interesting to

conclusively determine whether Western healthcare practices are compatible with the

continually changing Zulu way of life.

Lastly, future studies could explore effective communication strategies for propelling Zulu

breast cancer narratives into public consciousness. Evidently, there is a great need for this and

Zulu women are the best strategists for devising appropriate awareness interventions. Their

narratives highlighted their strong desire to be more involved in communication endeavours.

However, such opportunities are not availed to them. Therefore, their participation could be

infinitely empowering to them.

206

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APPENDICES APPENDIX A: Approval of Research from the Department of Health

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APPENDIX B: Ethical Clearance Form (University of Johannesburg)

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APPENDIX C: Letter of Support (Inkosi Albert Luthuli Central Hospital)

223

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APPENDIX D: Informed consent English

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APPENDIX E: Informed Consent Form Zulu

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APPENDIX F: Interview Schedule/Guide