context, culture and disability: a narrative inquiry into the lived

359 Pages·2013·3.9 MB·English

CONTEXT, CULTURE AND DISABILITY: A NARRATIVE INQUIRY
INTO THE LIVED EXPERIENCES OF ADULTS WITH DISABILITIES
LIVING IN A RURAL AREA

JOANNE FRANCES NEILLE

A THESIS SUBMITTED TO THE FACULTY OF HUMANITIES,
UNIVERSITY OF THE WITWATERSRAND, JOHANNESBURG, IN
FULFILMENT OF THE REQUIREMENTS OF THE DEGREE OF
DOCTOR OF PHILOSOPHY

AUGUST 2013
ABSTRACT
This thesis documents the everyday experiences of adults with disabilities living in a rural
area of South Africa. Given South Africa‟s tumultuous history, characterised by human rights
violations incurred through cultural, political and racial conflicts, and the country‟s current
state of socio-economic and political turmoil, violence has come to represent a core feature in
the lives of many South Africans. This, together with the impact of unemployment, food
insecurity and unequal power distribution, has significantly affected the ways in which many
people make sense of their life experiences. Despite the fact that exposure to unequal power
dynamics, violence, marginalisation and exclusion are documented to dominate the life
experiences of people with disabilities, little is understood about the ways in which these
aspects manifest in the interpretation and reconstruction of experiences.

Previous research into the field of disability studies has depended primarily on quantitative
measures, or on the reports of family members and caregivers as proxies, perpetuating the
cycle of voicelessness and marginalization amongst adults with disabilities. Those studies
which have adopted qualitative measures in order to explore the psychosocial experiences of
disability have focussed largely on the limitations imposed by physical access, and have
relied predominantly on the medical and social models of disability, or on the World Health
Organisation‟s International Classification on Functioning, Disability and Health (WHO ICF,
2001). These models consider the psychosocial experience of disability to be universal, and
do not adequately take into account the impact of cultural and contextual variables. This has
negatively impacted on the establishment of a research repository upon which evidence-based
practice could be developed.

This thesis aimed to explore and document the lived experiences of 30 adults with a variety
of disabilities, living in 12 rural villages in the Mpumalanga Province of South Africa. A
combination of narrative inquiry and participant observation was employed in order to
examine the relationship between personal and social interpretations of experience. Data
analysis was conducted using a combination of Clandinin and Connelly‟s (2000) Three
Dimensional Narrative Inquiry Space, Harré‟s Positioning Theory (1990, 1993, & 2009), and
Thematic Analysis (Braun & Clarke, 2006).
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Results revealed that narratives were plurivocal in nature, giving rise to a complex
relationship between personal and social interpretations of experience. The findings
highlighted the impact of cultural norms, values and roles on making sense of experiences
associated with disability. Four new types of narrative emerged, none of which conformed to
the current interpretations of lived experience as reported in the literature. All of the
narratives were pervaded by the embodied experience of violence, including evidence of
structural, physical, psychological and sexual violence, as well as violence by means of
deprivation. This gave rise to a sense of moral decay and highlighted the ways in which abuse
of power has become woven into lived experience. In this way insight was gained into the
complex interplay between impairment, exclusion, high mortality rates, violence, and poverty
in rural areas.

Narrative inquiry proved to be a particularly useful tool for providing insight into disability as
a socio-cultural construct, drawing attention to a variety of clinical, policy and theoretical
implications. These gave rise to a number of broader philosophical questions pertaining to the
role of memory, vulnerability and responsibility, and the ways in which all citizens have the
potential to be complicit in denying the reality of lived experience amongst vulnerable
members of society. These findings demand attention to the ways in which governments,
communities and individuals conceive of what it means to be human, and consequently how
the ethics of care is embraced within society.

Key Words: disability, context, culture, violence, narrative inquiry, responsibility

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DECLARATION

I declare that this dissertation is my own unaided work. It has never been submitted for any
degree or examination in any other university. All sources that I have used, made reference to
or quoted have been indicated and acknowledged.

Joanne Frances Neille (neé Barratt)

August 2013

Signed ____________________

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ACKNOWLEDGEMENTS

Firstly, to the participants of this study, words cannot express my gratitude to you for opening
my eyes to the reality of living with a disability in a rural area. Your stories shocked and
horrified me, and I will do my best to ensure that these reports of human rights violations and
violence do not remain stories. For too long, stories like this have been regarded as „myths‟. I
promise to honour my privilege of being witness to your stories by making every attempt to
address these issues.

To Lindiwe Thobela and Zelda Mubi, this research would never have happened if it were not
for you. Thank you for your time, patience, guidance, friendship and sense of humour. You
have allowed me a rare insight into the complex interplay between cultural and contextual
issues and how these manifest in the lived experience of disability. I hope that this research
will be used to inform policy, practice and teaching and in so doing, improve the quality of
life for persons with disabilities.

To my supervisor, Professor Claire Penn, thank you for your patient guidance and mentoring
over the duration of this project. I am eternally grateful for the sensitive way in which you
shown me the importance of qualitative research, and what it really means to value people. I
feel honoured to have been supervised by you.

To my friends and colleagues at the University of the Witwatersrand, especially Professor
Katijah Khoza-Shangase, Professor Brendon Barnes, and Dr Jennifer Watermeyer. Thank
you for sharing your excitement of research with me and for never getting tired of listening to
me thinking out loud, while trying to make sense of my findings.

To Victor De Andrade and Zandile Mkwanazi, thank you for assisting me in ensuring
trustworthiness and rigour of findings, and for your valuable insight into the results of this
research.
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To the School of Human and Community Development, specifically the Department of
Speech and Hearing Therapy at the University of the Witwatersrand, thank you for all of your
support in assisting me to complete this dissertation on time! I am particularly grateful for the
financial support received from the Dean‟s PhD Completion Grant.

To the South African Netherlands Research Programme on Alternatives in Development
(SANPAD), thank you for the opportunity to be a part of the 2008 Research Capacity
Initiative (RCI) cohort. The insights that I gained into research, particularly qualitative
research were immeasurable.

To the Carnegie Corporation of New York, thank you for the generous funding that made this
research possible.

To my family and friends, this journey was only in part an academic experience, but also
evolved into a personal journey. I would like to thank you for your love and support during
this process.

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DEDICATION

This dissertation is dedicated to all of those who remain silenced, not only by nature of their
disability, but also as a result of poverty, marginalisation, and violence, rendering their
experiences too raw and painful to talk about.

To my participants, just as your pain cannot be transformed into words, neither can my
gratitude. When I embarked on this study, I had no idea that my findings would reflect such
horror. Your bravery and resilience is remarkable. In order to protect your identities, I have
not mentioned any of your names in this dissertation, but if I could, I would shout them out
loudly. Thank you to those of you who spent hours with me, welcoming me into your homes,
sharing meals with me, talking to me about your experiences and sharing the stories and
artefacts that in part, define who you are. Thank you, not only to those of you who „spoke out
loudly‟, but also to those who „had no story to tell‟. The contrast between your bravery and
life experiences leaves me speechless.

Finally to Lindiwe, my friend, mentor, and research mediator, this research is dedicated to
you. Your amazing work, which often goes unrecognized, has brought solace and comfort to
so many people in your community. Despite the enormous challenges that you face, you are a
source of power and strength to so many, always negotiating difficult situations with good
humour and kindness.

“We shall not cease from exploration. And the
end of all our exploring will be to arrive where
we started and know the place for the first
time.”
T.S Eliot (1943)
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NOTES ON TERMINOLOGY AND PRESENTATION

There are a number of terms and concepts that I have used throughout this study that require
clarification. In terms of disability, I have included a description of the nature of the disability
(e.g. physical, visual, communicative) and in some cases in have included a description of the
nature of the diagnosis as was described to me during the interviews (e.g. stroke, epilepsy,
cerebral palsy). I do not feel that classification according to type or degree of disability is
particularly important in this study. However, by including these descriptions it emerges that
neither nature nor degree of disability appear to be particularly significant, but that it is rather
the interplay of personal and social interpretations of disability and the way in which these
are mediated through context and culture that appear to be defining factors within the
individual narratives.

Although at times I have used the terms „story‟ and „narrative‟ interchangeably, I feel that it
is essential to highlight the subtle differences underlying these concepts. The term story is
used to describe the act that the teller engages in as a means to recall an event or provide an
experience with meaning (Clandinin & Connelly, 2000). The term „narrative‟ has been used
to suggest a structure underpinning the story, as defined by means of the temporal and spatial
boundaries imposed, the actions, actors and event which inhabit the narrative, and the
construction of a narrative plot (Clandinin & Connelly, 2000). Thus the action of „narrative
analysis‟ implies the structures that storytellers rely on but are not fully aware of (Frank,
2000).

There are times in the participants‟ narratives and in the excerpts included in this thesis where
the terms „illness‟ and „disability‟ are used interchangeably. While both of these terms carry
with them specific meanings, it must be acknowledged that in the rural villages in the
Nkomazi East Municipality some people with disabilities refer to themselves as „ill‟ or „sick‟.
At times this is because their disabilities may have been acquired secondary to an illness (for
example in the case of hearing loss as a result of meningitis, or stroke as a consequence of
HIV), while at other times it would seem that both „illness‟ and „disability‟ are used as a form
of identity. Thus the terms „illness‟ and „disability‟ are seen to be used as a way of reflecting
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affiliations with the western explanations for illness and disability, or affiliations with other
persons with disabilities as a form of „group identity‟.

At times it may come across as though I have made assumptions about the participants‟
feelings or responses to certain experiences. Given the nature of qualitative research, and the
fact that I relied heavily on a reflective journal during the process of data collection, analysis
and write up or results, I have made attempts to include my own responses to the data, while
at the same time trying to allow the data to speak for itself. However, given my relationship
with the participants and the research mediator, and the extended periods that I have spent in
the community, it has been difficult to always keep these two separate.

Although the notions of place and context are fundamental to this study, as well as to the field
of narrative inquiry, I have removed the names of all villages, schools, and hospitals in order
to protect the participants‟ rights to confidentiality. Similarly, where reference was made to
specific people, their names have been omitted and instead a description of the relationship of
the participant to the person being spoken about has been included in brackets.

I have referred to the adults with disabilities who took part in this study as „participants‟ and
have referred to them as „Participant 1, Participant 2‟, etc. While I acknowledge the APA
guidelines that numbers 1 - 9 should be written as words, for consistency in terms of
describing participants, as well as for the numbering of chapters, I have chosen to use
numbers only.

When referring to clinical encounters and healthcare experiences, I have used the term
„patient‟ as opposed to „client‟ or „health service user‟ since this is the way in which
participants refer to themselves in relation to accessing healthcare services.

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GLOSSARY OF TERMINOLOGY

Baksakatsi Witches
Bantustans Alternative terminology used for „homelands‟ which
refers to the forced resettlement and restricted
movement for black South Africans prior to and during
the apartheid era.
Batho Pele SeSotho term meaning „people first‟. The Batho Pele
initiative aims to enhance the quality and accessibility
of government services by improving efficiency and
accountability to the recipients of public goods and
services.
Community Service The South African government introduced a year of
compulsory work in the government sector for medical
professionals in 1998. By 2003 most allied medical
professionals, including dentists, pharmacists,
occupational therapists, physiotherapists, and speech
and hearing therapists, among others were required to
complete a year of community service, prior to being
allowed to register with the Health Professionals
Council of South Africa (HPCSA) in the category of
„independent practice‟.
Emadloti Spirits
Gogo SiSwati term for grandmother
Ingati Blood
Inyanga Medicine men
Lobola African tradition whereby the bridegroom's family
makes a payment in cattle or cash to the bride's family
shortly before the marriage takes place.
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