Women Living in Kibera, Kenya

281 Pages·2012·1.65 MB·English

Women Living in Kibera, Kenya: Stories of being HIV+.

by

Samaya VanTyler
B.Ed., University of Victoria, 1985
M.A., University of Victoria, 2003

A Thesis Submitted in Partial Fulfillment
of the Requirements for the Degree of

DOCTOR OF PHILOSOPHY

in Interdisciplinary Studies

 Samaya VanTyler, 2012
University of Victoria

All rights reserved. This thesis may not be reproduced in whole or in part, by photocopy
or other means, without the permission of the author.
ii
Supervisory Committee

Women Living in Kibera, Kenya: Stories of being HIV+.

by

Samaya VanTyler
B.Ed., University of Victoria, 1985
M.A., University of Victoria, 2003

Supervisory Committee

Dr. Laurene Sheilds, School of Nursing, University of Victoria
Co-Supervisor

Dr. Robert Dalton, Department of Curriculum and Instruction in the Faculty of
Education, University of Victoria
Co-Supervisor

Dr. Darlene Clover, Department of Educational Psychology in the Faculty of Education,
University of Victoria
Departmental Member

Dr. Francis Adu-Febiri, Department of Social Sciences, Camosun College
Additional Member
iii
Abstract

Supervisory Committee
Dr. Laurene Sheilds, School of Nursing, University of Victoria
Co-Supervisor
Dr. Robert Dalton, Department of Curriculum and Instruction in the Faculty of
Education, University of Victoria
Co-Supervisor
Dr. Darlene Clover, Department of Educational Psychology in the Faculty of Education,
University of Victoria
Departmental Member
Dr. Francis Adu-Febiri, Department of Social Sciences, Camosun College
Additional Member

There is an abundance of biomedical and social science research relating to
HIV/AIDS which has focused on understanding the disease from a medical crisis. The
research has attended to matters of prevention and clinical treatment. This study is a
naturalistic study which explores the socio-economic and political-cultural aspects of the
disease in and on the lives of nine women living in one of the world’s mega slums,
Kibera in Kenya.
The study is based on the assumption that the HIV/AIDS pandemic has brought
about social disruption and profound changes to the micro contexts of community and
family life. Cultural norms, practices and values that historically sustained the fabric of
African life are slowly being stripped away as those infected with HIV and their families
cope with the impact of the chronic illness. Living as HIV+ women is yet one more
challenge that these women face every day. They struggle to provide self-care and a
healthy life for those they are responsible for within an environment that lacks so many
social determinants of health.
Using a methodological convergence of narrative, feminist and Indigenous
methodologies within a post-colonial paradigm, I have explored how nine HIV+ African
women story/experience their daily lives and participate in community activities.
Consideration of the reality of the day to day experiences of HIV+ women living
in an African slum settlement may offer insights for government, policy makers, and
community-based and non-government organizations to better support and promote
quality of life for those living with HIV/AIDS.
iv
Table of Contents

Supervisory Committee .................................................................................................. ii
Abstract ......................................................................................................................... iii
Table of Contents .......................................................................................................... iv
Definition of Terms ..................................................................................................... viii
List of Tables...................................................................................................................x
Acknowledgments ......................................................................................................... xi
Dedication ................................................................................................................... xiii
Chapter 1: Introduction ....................................................................................................1
Study interest to researcher ..........................................................................................1
Background for the study .............................................................................................5
Significance of the study ..............................................................................................6
Purpose of the study.....................................................................................................8
My role as researcher ...................................................................................................9
Overview of the study ................................................................................................ 13
Chapter 2: Literature Review ......................................................................................... 15
Poverty, health and HIV/AIDS in Kenya ................................................................... 16
Definitions of poverty ............................................................................................ 16
Poverty in Kenya ................................................................................................... 19
Disparities in geographical poverty concentration .................................................. 21
Women and poverty ............................................................................................... 23
Female-headed households (FHHs) ........................................................................ 25
Poverty linked to health ......................................................................................... 26
HIV/AIDS within a global context ......................................................................... 31
Linking poverty, health and HIV/AIDS .................................................................. 32
HIV/AIDS in Kenya .............................................................................................. 33
Pre-requisites of health........................................................................................... 36
Health literacy ....................................................................................................... 39
Gender and the feminization of HIV/AIDS ................................................................ 40
Brief overview of HIV/AIDS ................................................................................. 40
Gender ................................................................................................................... 42
Stigma ................................................................................................................... 45
Colonization and its influence .................................................................................... 50
Past meta-narratives of the colonizers .................................................................... 52
Separating land and people .................................................................................... 54
A genealogy of Kibera ........................................................................................... 55
Administrative change and land disputes ................................................................ 56
Thwarted attempts to develop Kibera ..................................................................... 58
Chapter 3: Methodologies and Research Methods .......................................................... 61
Story .......................................................................................................................... 62
Narrative.................................................................................................................... 63
Narrative methodology .............................................................................................. 64
v
A narrative researcher ............................................................................................ 65
Narrative use and narrative research ....................................................................... 65
Feminist methodology ............................................................................................... 66
Difference .............................................................................................................. 68
Multi-methods ....................................................................................................... 68
Indigenous methodology ............................................................................................ 69
A decolonizing agenda ........................................................................................... 70
Authenticity ........................................................................................................... 71
Networking ............................................................................................................ 71
Difference .............................................................................................................. 72
Relational interdependence .................................................................................... 73
A methodological convergence .................................................................................. 74
Research methods ...................................................................................................... 77
An international site for research ............................................................................ 77
Ethical considerations ............................................................................................ 78
Entry into the research field: Community contact in Kibera ................................... 80
Participant selection ............................................................................................... 81
Participant recruitment ........................................................................................... 81
Meeting up with my community contact ................................................................ 83
To tell their stories ................................................................................................. 84
Participant observation ........................................................................................... 87
Other meetings ....................................................................................................... 88
Storied conversations in homes .............................................................................. 88
Storied conversations in the compound .................................................................. 89
Reporting of findings ............................................................................................. 89
Data analysis .......................................................................................................... 90
Anonymity and confidentiality ............................................................................... 93
Reciprocity ............................................................................................................ 94
Trustworthiness and validity .................................................................................. 94
Reflexivity ............................................................................................................. 95
Liberties taken ....................................................................................................... 96
Chapter 4: Understanding the Research Context and Meeting the Women ..................... 98
The basics of life in Kibera ...................................................................................... 100
Water ................................................................................................................... 100
Electricity ............................................................................................................ 101
Garbage and drainage .......................................................................................... 101
Health facilities .................................................................................................... 102
Housing ............................................................................................................... 103
Fear of eviction .................................................................................................... 104
Mobility ............................................................................................................... 106
Political and community life ................................................................................ 107
Changing traditions .............................................................................................. 109
Language ............................................................................................................. 111
Education ............................................................................................................. 112
Employment ........................................................................................................ 112
Donor support ...................................................................................................... 114
vi
My community contact: Winnie Manga Mwarcharo................................................. 114
Meeting the women ............................................................................................. 118
Amina Abdul ....................................................................................................... 118
Amina Bashir ....................................................................................................... 121
Loise Anyango Mango ......................................................................................... 123
Lucy Njeri ........................................................................................................... 124
Mama May .......................................................................................................... 125
Penninah Ngina.................................................................................................... 127
Sarah Chelangt ..................................................................................................... 128
Zakia Yusufu ....................................................................................................... 130
Zuhura Odhiambo ................................................................................................ 131
Summary of the research participants ....................................................................... 133
Chapter 5: Interpretative Findings ................................................................................ 137
Beginning the day .................................................................................................... 138
Waking up to start the day.................................................................................... 138
A busy day ........................................................................................................... 139
A different busy day............................................................................................. 141
An African woman .................................................................................................. 141
Learnings from the past ........................................................................................ 142
Boys and girls become men and women ............................................................... 143
Left alone with the baby ....................................................................................... 144
Women support women ....................................................................................... 144
A witch to blame .................................................................................................. 146
Keeping his secret ................................................................................................ 146
After telling her secret.......................................................................................... 148
No legal title to land ............................................................................................. 149
If I die, who will take care of my children? .............................................................. 149
Shunned by mothers ............................................................................................. 149
Taking my belongings .......................................................................................... 150
Poor parents too ................................................................................................... 151
Mothers’ support .................................................................................................. 151
Fear of death ........................................................................................................ 152
They just come to you… .......................................................................................... 153
Days not able to work: Get up anyway ................................................................. 154
Always being the one ........................................................................................... 154
Disclosure ............................................................................................................ 155
HIV+ status already disclosed .............................................................................. 157
A mother’s role .................................................................................................... 157
Relationships with children .................................................................................. 158
If I sit there, that ten bob won’t come. ...................................................................... 160
Jua kali ................................................................................................................ 160
Work change due to HIV+ status ......................................................................... 162
Networking .......................................................................................................... 164
Being up, feeling down and stress-up ....................................................................... 165
ARV prescriptions ............................................................................................... 166
Too sick to work .................................................................................................. 167
vii
Not sick ............................................................................................................... 169
Being/going down ................................................................................................ 169
Staying up ............................................................................................................ 174
I am stigma .............................................................................................................. 177
Stigmatizing words .............................................................................................. 178
Keeping secrets .................................................................................................... 180
What is stigma? ................................................................................................... 182
Learning of HIV+ status....................................................................................... 182
Living with HIV is a challenge ................................................................................ 187
Support groups ..................................................................................................... 188
Being community................................................................................................. 194
Belief in God ....................................................................................................... 196
Ending the day ......................................................................................................... 200
Cooking supper .................................................................................................... 201
Time to sleep ....................................................................................................... 201
Chapter 6: Discussion and Conclusion ......................................................................... 204
Poverty .................................................................................................................... 206
Women and their children ........................................................................................ 209
Stigma ..................................................................................................................... 210
Shared community ................................................................................................... 213
Limitations of the study ........................................................................................... 214
Narrative reflections of the study ............................................................................. 216
Where to from here .................................................................................................. 221
Closing .................................................................................................................... 224
References ................................................................................................................... 226
Appendix A Republic of Kenya Research Clearance Permit ........................................ 257
Appendix B Research Authorization ............................................................................ 258
Appendix C Community Contact Letter of Agreement ................................................. 259
Appendix D Intake Form ............................................................................................. 260
Appendix E Sample Guiding Questions ....................................................................... 261
Appendix F Participant Consent Form ......................................................................... 262
Appendix G Exact Quotations ..................................................................................... 263
viii
Definition of Terms

 HIV: Human immunodeficiency virus. This is the virus that attacks the T cells
in the body and can cause AIDS.
 HIV+: Human immunodeficiency virus positive. This refers to the positive status
of those whose blood has been medically tested for the virus.
 AIDS: Acquired Immune Deficiency Syndrome. It is the life threatening stage of
HIV infection characterized by decreased numbers of T4 cells. Through-
out this study, HIV+ is used to describe the medical condition of the
participants, although reference to AIDS is contained in certain participant
quotations.
 T4 cells: Specialized white blood cells that play an important part in the body’s
immune system to help the body fight infection. If the CD4 count is below
200, a person is vulnerable to opportunistic infections and is less able to
fight off these infections.
 ARVs: Anti-retroviral treatment to combat the progression of the HI virus in the
body. The term HAART, highly active antiretroviral therapy, is now the
more commonly used term in the western world. It was not used by any of
the participants.
 Indigenous: The United Nations (UN) has not adopted an official definition of
“Indigenous” because of the diversity of Indigenous Peoples in the world.
Instead, the UN-system body approach is to identify rather than define
Indigenous Peoples. In this study the word is used as a descriptor to
identify African women living in Kibera today who are generally regarded
as the “original inhabitants” of a region prior to colonization.
 Community: In traditional western thinking “community” is a noun, something
located outside of an individual. Adu-Febiri (2008) stated, “In sociological
terms, a community may be formally described as a spatial or political unit
ix
of social organization that gives people a sense of belonging “(p. 517).
Examples of such communities are Chinatown and the gay community.
This model of thinking emulates the ideology of human separation,
scarcity of resources and “It tends to transform the pre-colonial Indigenous
symbiotic relationships between persons embodied in lineages and the
commons into individual and dialectical relationships. This may lead to
the negation of community as Indigenous People conceptualize and live it”
(Adu-Febiri, 2008, p. 15). The group of HIV+ women in this study
constitute a close-knit community joined by a medical condition, gender
and poverty that cuts across the traditional western idea of community
because they also live community as is more in keeping with an
Indigenous concept of community.
 Tribe: The concept of tribe was developed by the colonists during the 19th
century and reflects empirical and ideological realities for self-interested
purposes of domination and control. Ignoring the complexity of non-
Western societies, colonizers defined the categories into which rural and
urban societies were allocated. Historically determined and socially
constructed, tribes are convenient community myths (Oloo, 2008; Wiley,
1981). In the post-colonial context of Kibera, individual women in this
study were identified by the research community contact as being a
member of a certain tribe. However, I have referred to them as belonging
to certain ethnic groups of African people.
x
List of Tables

Table 1. Women in the study. ...................................................................................... 135
Table 2. Women in the study and their children. .......................................................... 136