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CHAPTER 2: LITERATURE REVIEW
INTRODUCTION
In this chapter, the researcher reviews literature to uncover the knowledge gap in relation to the intersection of disability, gender, and vulnerability in the Global South. Specifically, this review focused on identifying and revealing research debates and gaps in relation to the disability concept and feminist disability thinking, intersectionality of disability, gender and vulnerability, and the challenges of rural WGWD in peripheral areas of the Global South. The review was intended to reveal current debates and research gaps in the opportunities for WWD to advance their rights at all levels of the society. Regarding the challenges faced by PWD in society, this study focused mainly on PWD’s access to basic needs including health, education, information, inputs, protection against abuse and violence and the challenges in the enjoyment of these rights
HISTORICAL TRAJECTORY OF DISABILITY
As early as 355BC, disability has been recorded as the basis for discrimination and marginalisation. Around 355BC, Aristotle said, “those who are born deaf become senseless and incapable of reason” (Hladek, G. 2009:1). In the 16th century, Martin Luther (1463 – 1546) claimed that he saw a devil in a profoundly disabled child, and Luther recommended that the child be killed (Barnes 1991). The comments by Aristotle and Luther portrayed disability as an unfortunate situation that any person found to be impaired was deemed an unworthy human being and incapable of reason and unworthy being subject to equality, the right to dignity, and life in society. The viewpoints of these great thinkers were not only unfortunate but rather a cause for concern in the fight against the segregation, marginalisation, and discrimination of PWD. Indeed, society tends to follow the viewpoints of their respected leaders and great thinkers in according rights to various disadvantaged groups of the society.
Studies conducted in the 1950s revealed how society viewed PWD negatively. During this time many parts of society, including community leaders, policy makers, and able-bodied persons, viewed disability as a medical condition that required specialist health support services. These studies saw only the impaired body parts of PWD, thereby proposing medical treatment, rendering them nothing more than a problem to be solved. This limited conceptualisation of disability during the 1950s ensured continued challenges for PWD. The United Kingdom Disabled Peoples’ Council (UKPC 2011a) notes that the rampant violation of the rights of PWD during the 1950s mainly took the form of resentment, persecution, discrimination, stigmatisation, indignity, and denial of human rights.
The societal discrimination and marginalization of PWD continues to be a challenge to the achievement of equality and social justice in the 21st century. In many societies of the Global South, PWD are viewed as objects of medical and charity attention which should not be consulted nor allowed to participate in matters shaping their lives (Hall 2011; CRPD 2006). PWD continue to be side-lined in national and community policy making circles that even deliberate on their welfare and rights without the presence of a representative. This viewing of PWD as objects is contrary to the best contemporary human rights practices and norms, which emphasise the equality, dignity and capabilities of every person to make enormous socio-economic and political decisions and contributions to the society. For instance, the CRPD (2006) under its article 29 (a) calls upon State parties to ensure that PWD participate effectively and fully in political and public life on the equal basis with others.
The existence of negative perceptions against PWD has made the task of defining disability an elusive one. Dube (2007:7) states that defining disability remains as “elusive as finding the legendary needle in a haystack”. The WHO and the World Bank (2011:3) further note that defining disability is difficult as the phenomenon is “complex, dynamic, multidimensional and contested”. Historically, the term has been used synonymously with inability, denoting that being disabled was equal to being weak, useless, and powerless. Disability is commonly defined in terms of the observed or inferred characteristics such as being deaf, dumb, blind, and lame amongst other challenges that limit mobility and being of poor health. This narrow conceptualisation of disability contradicts best human rights norms and practices, as spelt out in international instruments including the UDHR and the CRPD which emphasise on human dignity of each human being on earth by being human.
All the above expositions of disability are narrow and unconvincing in the 21st century as they do not consider PWD in the realms of human rights. The absence of an encompassing and convincing explanation of disability stems from diverging views and perceptions as influenced by varied and pervasive religious and cultural norms. Pervasive societal norms and values place the challenge of disability on the individual, looking at it from either moral, expert and charity perspective. This inadequate conceptualisation of disability based on biological features of body parts results in uninformed and piecemeal intervention strategies, programs, policies and laws for PWD that fail to provide sustainable human rights solutions to the plight of these individuals. A comprehensive understanding of disability is crucial to empowering PWD to claim their rights, and in directing actors towards total emancipation and creation of independent and sustainable development for PWD.
The Disabled Persons Act of Zimbabwe (1992) under section 2 defines a PWD as:
“A person with a physical, mental or sensory disability, including a visual, hearing or speech functional disability, which gives rise to physical, cultural or social barriers inhibiting him from participating at an equal level with other members of society in activities, undertakings or fields of employment that are open to other members of society.”
Again, the Act’s definition of disability is not in tandem with accepted human rights norms and practices as it ignores the honest and important point that being disabled is by far beyond having visible impairments by the so-called disabled person. The Act’s conceptualisation of disability is premised on the old-fashioned medical view of disability which locates disability within the person with impaired body parts. Thus, individualising disability and viewing it in the essence of inability of a person to perform at an equal footing with an able-bodied person. By so doing, the Act fails to appreciate that impairments found on human beings resemble human diversity, meaning PWD are diverse human beings, with dignity, and who are affected by environmental and attitudinal barriers in society.
The CRPD provides a convincing and inclusive definition of disability. Under Article 1, the CRPD does not openly provide a definition of PWD but instead shows that PWD are part of an inclusive group. The clause in question stated that:
“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (CRPD 2006).
The CRPD definition draws attention to two important but often misconstrued terms: disability and impairment. In the African context, various sections of the society often confuse and use the terms interchangeably. Body impairment is conceptualised as disability and inability of one to live independently, which is wrong. This narrow conceptual narration of disability is to blame for inadequate intervention strategies that have increased instead of reducing poverty and misery amongst PWD. The CRPD however shows that having an impairment is an indication of human diversity, and an impaired person can only be disabled by the unsupporting society and environment.
In line with the above, the WHO (2011) argues that even if disability and impairment are used interchangeably, they are different even though both terms speak to of crucial issues for consideration in policy formulation and devising of responses the problems of people who require rehabilitation facilities, medical services, and social welfare. According to Schulze (2010:27), “[a]n impairment on its own would not lead to disability should there be a completely inclusive and comprehensively accessible environment”, such as the provision of aids and devices to all PWD in need of them, having accessible environments, favourable and supportive laws and policies, and, above all, embracing this disadvantaged group of the society. For this reason, the CRPD resembles a paradigm shift from the narrow conceptualisation of disability to the desired human rights-based approach. The human rights-based concept of disability, as seconded by the CRPD, is exhaustive and inclusive of the critical variables of bodily impairment and its interaction with wider society. The CRPD’s conceptualisation of disability is therefore transformative, and both a development and human rights instrument with the potential to drive a new understanding and sustainable approaches to the challenges of PWD in the 21st century.
This is the adopted definition of PWD for this study for it adequately helps in understanding the lived experiences of WWD in rural areas, and above all, informs the formulation of better and inclusive policies, laws and programmes emancipating PWD.
DISABILITY MODELS
Disability is conceptualized by various models including the religious, charity, medical, economic, empowering, the inclusive, and more flexible human rights approach. The approaches reveal ways in which society limits or provides access to employment, ensures participation and access to basic needs and services for PWD. An exposition of these models is important in understanding issues and experiences faced by WWD in rural Zimbabwe. The sub-sections below explain the models reviewed for this study
The moral or religious model of disability
This approach is heavily influenced by religious and cultural norms and values that are infused to explain and dictate roles and responsibilities to people with impaired body parts. Conceptualized in this way, the challenge of disability is normally placed upon the person with a deformed body. By placing disability within the person, the model gives various explanations as to why an individual has an impairment, including that he/she got it as a form of a punishment of some sort from angry ancestors or God. The model views PWD as victims of ancestors or God’s displeasure for their sins and that of their relatives. The Historical Outline (2007:1) reveals how PWD “were not only ridiculed and viewed as people who are paying for their past sins (karmic justice) but were perceived as witches and wizards”. Previous scholars noted how people with deformed body parts were often viewed as outcasts, devil’s substitutes for human beings or changelings that result from moral and religious models of disability (Munyi 2012; Barnes 1991). Many religious and cultural groups or societies of the Global South still hold onto this model. In some instances, the model is perpetuated by “myths, legend, folklores and literature; even modern films, television programmes, children’s comics and cartoons portray these negative stereotyping” (Kenya Projects Organisation KENPRO 2010:4).
The detrimental effect of using this model is that it breeds ridicule, stigmatization, and exclusion of PWD. The rejection and exclusion of PWD by the society further reduces the confidence PWD have in seeking participation in socio-economic and political development. In some instances, the discrimination and ridicule against PWD includes their families. This was aptly captured by previous scholars who noted that the shame that comes with having a disability sometimes transcends to the entire family unit (Atshan 1997; Fahd, Marji, Myfti, Masri & Makaran 1997). For these reasons, the approach is limited in scope, as it contradicts the best human rights principles of equality, inclusion and non-discrimination.
Although some religious societies are beginning to abandon this approach to embrace PWD as equal human beings, the model is still evident in rural Zimbabwe, where reports are often made of CWD being strangled after birth, or hidden away when visitors arrive to evade shame (Nilsson 2011; Zimbabwe Human Rights Report 2011). In such instances, the model continues to deny PWD the enjoyment of rights and freedoms in the 21st century. Against such incidences, the model remains an important approach for analysing experiences of WGWD in remote areas where disabled people face various forms of stigmatization and have received various explanations for their various forms of impairments.
The charity model of disability
Related to the moral approach to disability is the charity model. With this model, PWD are positioned as tragic and helpless victims of circumstances, deserving pity, care, and protection (Gabel & Peters 2004). The charity model inspired many benevolent and charitable fund-raising and care efforts in the past, such as Children in Need. The medical model notion of disability is ultimately patronizing, disenabling, and champions the institutionalized care of PWD and may lead to discrimination. This benevolent way of viewing PWD creates dependence on the part of the disabled population. The model is incomplete and encourages narrow thinking about PWD. As such, it has no room in contemporary human rights praxis which focuses on justice and equality, rather than the creation of an army of powerless and helpless impaired individuals who are dependent on the benevolent individuals, churches, the state, and other well-wishers. The approach has seen the mushrooming of donor sponsored special homes and schools for PWD
It is important for this study to analyse this model as it provides the basis upon which the researcher can analyse efforts by stakeholders to advance disability issues in Zimbabwe.
The empowering model of disability
This model is the opposite of the medical model where experts/professionals are viewed as service providers to the clients, who happen to be PWD and their families. The power rests on the service provider to decide on the services he or she believes are suitable for the client. Within the empowering model, information about PWD is canvassed from PWD community, who decide on what they value and want to see happen in their community or lives. The resources are put before PWD, who then control and decide on their preferred use. The empowerment of PWD is central to the dictates of the CRPD, and many other international and regional human rights instruments that emphasise on inclusion and participation of PWD in decision making.
The medical model of disability
The medical model is one of the most widely used approaches for social policy and conceptualization of the plight of PWD in Global South. The approach views disability in the narrow frames of an abnormality, a sickness, or a defect to be cured through medicine (Kaplan 2007; Boorse 2010). An impaired individual is viewed by the medical model “as being in the sick role or as being sick” with “a condition (a deficit) which is totally unwanted” (Pfeiffer 2001:30). With the medical model, PWD are categorized in accordance with their impairments, and then referred to specialised medical practitioners to rectify their unwanted features (Lang 2009:268). For this reason, the medical approach is deficit-based, defining disability from the perspective of people who do not live with disability and focusing on an apparent lack of ability and diagnostic categorization of impairment to create a parallel track of differences (Melish 2007; Linton 1998; Lord 2009; Crow 1996). PWD are disempowered based on medical results, and the diagnosis is normally used to control and regulate PWD’s choice of food, leisure, access to social benefits, education and employment. This kind of thinking lead to the disabled population being systematically excluded from and discriminated against in society
CHAPTER 1: INTRODUCTION AND BACKGROUND TO THE STUDY
1.1 INTRODUCTION AND BACKGROUND
1.2 DESCRIPTION OF THE STUDY PROBLEM
1.3 RESEARCH OBJECTIVES
1.4 SCOPE OF THE STUDY
1.5 THEORETICAL FRAMEWORK
1.6 SIGNIFICANCE OF THE STUDY
1.7 METHODOLOGY
1.8 CLARIFICATION OF TERMS
1.9 CHAPTER LAYOUT
CHAPTER 2: LITERATURE REVIEW
2.1 INTRODUCTION
2.2 HISTORICAL TRAJECTORY OF DISABILITY
2.3 DISABILITY MODELS
2.4 PREVALENCE AND CAUSES OF DISABILITY
2.5 INTERSECTIONALITY OF GENDER, DISABILITY, FEMINISM AND VULNERABILITY IN THE GLOBAL SOUTH
2.6 CONCLUSION
CHAPTER 3: METHODOLOGY
3.1 INTRODUCTION
3.2 RESEARCH APPROACH
3.3 RESEARCH DESIGN
3.4 VALIDITY AND RELIABILITY OF THE DATA..
3.5 ETHICAL CONSIDERATIONS
3.6 CONCLUSION
CHAPTER 4: AN ANALYSIS OF INTERNATIONAL AND NATIONAL MECHANISMS FOR ADVANCING THE RIGHTS OF WOMEN WITH DISABILITIES
4.1 INTRODUCTION
4.2 UN AND AFRICAN DISABILITY RIGHTS INSTRUMENTS AND POLICIES
4.3 NATIONAL LEGAL, POLICY AND INSTITUTIONAL FRAMEWORKS IN ZIMBABWE
4.4 CONCLUSION
CHAPTER 5: RESULTS AND DISCUSSION
5.1 INTRODUCTION
5.2 THE SOCIO-DEMOGRAPHIC CHARACTERISTICS OF THE PARTICIPANTS
5.3 PERCEPTION OF WWD IN RURAL COMMUNITIES
5.4 EXPERIENCES OF WWD IN RURAL COMMUNITIES
5.5 ACADEMIC AND SOCIAL EXPERIENCES OF GIRLS WITH DISABILITIES IN RURAL SCHOOLS
5.6 POSSIBILITIES FOR ADVANCING THE RIGHTS OF RURAL WWD
5.7 CONCLUSION
CHAPTER 6: CONCLUSIONS AND RECOMMENDATIONS
6.1 INTRODUCTION
6.2 GENERAL CONCLUSIONS
6.3 RECOMMENDATIONS
6.4 CONCLUSION
LIST OF SOURCES
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