Using visual vignettes to explore sensitive topics: a research note on exploring attitudes towards people with albinism in Tanzania

ABSTRACT

This study is one of the first to explore the use of (drawn) visual vignettes in qualitative research in Africa. The vignette method was used to discuss the sensitive topic of people’s attitudes towards people with albinism in Tanzania among high school students. Focus was on two key questions: (i) To what extent was the vignette method implemented as intended?; (ii) Has the vignette method achieved its goal?. This research note discusses the effectivity of the visual vignette method as a tool to gain a better insight into people’s attitudes towards people with albinism, but also describes the possibilities of visual vignettes as a tool for research on other sensitive topics.     

Situating language rights: English and Swahili in Tanzania revisited1

This paper argues for an ethnographic‐sociolinguistic approach to the issue of linguistic rights. In much of the literature on linguistic rights, a fundamentally flawed set of assumptions about language and society is being used, leading to assessments of language situations that are empirically not sustainable. An alternative set of assumptions is offered, grounded in ethnography and focused on language use as oriented towards centering institutions that attribute indexicalities – function and value – to linguistic resources. Such centers are invariably multiple but stratified, and the state occupies a crucial place in these systems, between the world system and local forces. This model is applied to the Tanzanian sociolinguistic situation, where a strong state appeared to be caught between pressures that were both transnational and local. This gave rise to a pattern of distribution of linguistic resources, including English and Swahili, that offered semiotic opportunities to speakers to construct deeply ‘local’ meanings. The languages were not in themselves agents of inequality, but the way in which they were distributed nationally and in relation to transnational hierarchies is the key to understanding inequality. Discussions of linguistic rights should start from assessments of the real potential and constraints of linguistic resources, not from idealized and static conceptions of language and society and predefined scenarios of their interaction.     

The identities and social roles of people with an intellectual disability: challenging dominant cultural worldviews,values and mythologies

Intellectual disability is commonly conceptualised as stigmatised identity with which one has to live. However, within the literature the notion of a damaged identity is contested. The aim of this research was to explore the social construction of intellectual disability, with an emphasis on the identities and social roles of people with an intellectual disability. Informed by a contextualist perspective, this research was conducted within a participatory framework. The co-researchers involved in this research were 18 members of an advocacy agency. Photovoice and conversational interviewing were used to collect data and causal layered analysis was used to deconstruct the data. Analysis of the interactions that emerged across the causal layers revealed a complex dynamic of worldviews which served to construct people with an intellectual disability as incompetent, inherently different and not quite human. For genuine, transformative change to occur, developing an awareness and understanding of social processes, such as dehumanisation, is crucial.     

Caring for people with intellectual disabilities in poor rural communities in Cambodia: experience from ADD International

The burden of care for a disabled relative traditionally falls on women: mothers, wives, sisters. In Cambodia, Khmer culture is strongly structured around the family unit within which both the role of women and discrimination towards people with disabilities are sanctioned by social hierarchy, perceptions of weakness, and the concept of karmic merit. This article explores the impact of ADD International's project in Cambodia to support people with ‘intellectual disabilities’ – that is, learning disabilities – and aims to assess how this work affected carers, the majority of whom were women.     

From the Freak Show to the Living Room: Cultural Representations of Dwarfism and Obesity1

This article examines how cultural representations of deviant bodies vary based on historically informed narratives of bodily stigma. Using content analysis of 40 episodes of reality television programming, I contrast cultural representations of dwarfism and obesity. Over time, dwarfism became constructed as an identity project with the aim of bodily acceptance, whereas obesity became regarded as a body project with the goal of body transformation through weight loss. The mostly positive historical characterizations of dwarfs allowed them to easily adopt the tenets of the disability rights movement as they evolved from freak show performances to television as an educational platform. They have adopted a social model of disability, positive social identity, self‐acceptance, and full social participation. By contrast, the past and contemporary representations of obesity have been overwhelmingly negative. Obese freak show performers were openly mocked, and classifying obesity as a disability has not yet gained traction as a civil rights movement. Instead, obesity is viewed through the lens of individual responsibility and limits of social participation are emphasized. Body modification through weight loss constructs an identity based on self‐change. Generally, this article suggests that cultural representations as de‐stigmatization projects are enabled or constrained by historical factors and the nature of the bodily stigma.     

Deconstructing language practices: discursive constructions of children in Individual Education Plan resource documents

Although Individual Education Plan (IEP) resource documents in Ontario, Canada aim to assist children in achieving their special educational goals, a point of disjuncture exists between the documents’ intentions and children’s actual experiences. Addressing this issue is crucial in preventing inequity and fostering educational development and social well-being for children. We employ critical discourse analysis informed by disability theory to deconstruct the language practices used to conceptualize children in IEP resource documents. Our purpose is to question the underlying assumptions regarding representations of children and illuminate the potentially harmful consequences of such conceptions. We expose the presence of both neutral and harmful language practices and consider how such language may shape the way the documents translate from policy to practice. This study offers a model through which the language of other special education documents can be critically evaluated and proposes potential avenues for creating documents that avoid disabling children further.     

Disabled people and disaster management in New Zealand: examining online media messages

This article explores how disability and disabled people were portrayed in New Zealand online media between 2006 and 2016, with specific reference to disasters. Following a process of content analysis, the findings indicated that post disaster, persistent advocacy was required and ensuring accessibility, immediately following a disaster as well as in the recovery phase, was a significant issue. Disabled people were also primarily presented as a vulnerable cohort and the wide-ranging issues highlighted in the media suggest they currently have minimal voice in the four disaster management stages of risk reduction, readiness, response and recovery. This article emphasises the utilisation of relationships, skills and knowledge between individuals and Disabled People’s Organisations to strengthen the disability and disaster management discourse and activity. Increased inclusion of disabled people across all phases of disaster management will assist with the New Zealand government meeting its aspiration of a non-disabling society, especially during future disaster events.     

Experiencing Stigma and Exclusion: The Influence of Neoliberal Perspectives,Practices, and Policies on Living with Chronic Illness and Disability

Neoliberal perspectives, policies, and practices increasingly affect chronically ill and disabled people's embodied experiences of stigma and exclusion. Neoliberalism emphasizes individual responsibility and self-sufficiency, a limited social safety net, and narrow governmental accountability. Examining pivotal experiences of chronically ill people shows how neoliberalism can frame their alternatives, interactions, and actions. This examination prompts reconsidering Goffman's concept of stigma to include how larger social policies and practices affect experiencing stigma and exclusion and, also, illuminates temporal features of receiving a diagnosis, disclosing illness, and dealing with disabilities and unpredictable bodies. The analysis derives from an ethnographic story and published and unpublished personal accounts from first-hand and library research over the course of my career.     

Siblinghood through disability studies perspectives: diversifying discourse and knowledge about siblings with and without disabilities

Research about siblings where one has a disability has historically focused on the psychological outcomes of siblings of people with disabilities and has very rarely asked people with disabilities about their sibling relationships. This research focus represents the common individualizing approach and under-representation of people with disabilities that disability studies has argued against. Tracing the history of research about siblings and disability through de/institutionalization and towards current broader theories in disability studies, this article suggests that a range of disability studies perspectives can usefully de-individualize and expand research about siblings where one has a disability. Through examples of how materialist, feminist and inclusive perspectives can be applied to open up research about siblings and disability, the article argues that viewing siblinghood through the range of disability studies perspectives has the potential to expand this research field and represent new facets of siblings’ identities and lives together.     

Child Sexual Abuse: Community Concerns in Urban Tanzania

The aim of this study was to explore community perceptions about child sexual abuse in Tanzania. Thirteen focus group discussions were conducted with adult community members. The core category, children's rights challenged by lack of agency, was supported by eight categories. Aware but distressed portrayed feelings of hopelessness, lack of trust in the healthcare and legal systems reflected perceived malpractice, decreased respect for children's rights referred to poor parental care and substance abuse, myths justifying CSA illustrated cultural beliefs to rationalize child sexual abuse, disclosure threatened by fear of stigma and discriminationaligned the manifestations that prevent disclosure, actions driven by economic circumstances described the economical dependence of victims, urging a change in procedures reflected informants' wish to ally with local governance and pressure groups, and willingness to act indicated the community's role in supporting victims. The study showed how lack of agency calls for efforts to increase children's human rights at all levels.     

It takes a sister: sisterhood and Black womanhood in families of people with intellectual and developmental disabilities

This study explores the sibling relationships of Black women with sisters who have intellectual and developmental disabilities in the southeast United States including Georgia, South Carolina, Florida, and Louisiana. The researchers used disability/critical race theory to understand the perceptions and stigmas associated with disability relating to social, cultural, and psychological structures within sibling relationships. Results were captured in four themes: cultural perceptions of family and extended kin; sibling relationships; beliefs about the self as a sister; and siblings’ identities. The findings from this study will contribute to research in disability studies by providing a better understanding of the intersections of identities and the familial experiences of diverse families.     

Demand‐Side Challenges to Poverty Monitoring and Assessment Systems: Illustrations from Tanzania

Over the past decade, considerable attention and resources have been directed at Poverty Monitoring and Assessment Systems (PMASs), a core problem being the limited demand for, and use of, the data they generate. This article discusses the sources of these demand‐side problems and explores the difficulties in trying to address them via PMAS‐related processes, arguing that both institutional factors and design features have contributed to the disappointing performance of these systems. Incentive structures within the public sector in particular have made for an extremely unfavourable environment, and institutional problems have been compounded by questionable design features resulting from faulty analysis, flawed assumptions and conflicting views as to the objectives of ‘poverty monitoring’. Tanzania's PMAS experience is used to illustrate the argument.     

Exclusion of HIV-positive people with disabilities in the media

This current issue piece aims to address the harmful exclusion of people with disabilities in the Iranian media. In a case study, this author collected news related to statistics of HIV-positive people covered by popular news websites written in the Persian language between June 2011 and June 2012. Within the analysed electronic texts, no reference was made to the number of HIV-positive people with disabilities. Under the rubric of critical discourse analysis, one can argue that this lack of representation may also be linked to a more general level of discourse that constitutes the marginalization of people with disabilities. This damaging exclusion both legitimizes and reproduces the ideology that people with disabilities are social minorities who can be excluded to the benefit of powerful people. This current issue piece also discusses the potential negative consequences of excluding HIV-positive people with disabilities from the discourse of HIV/AIDS in the media. Ultimately, the conceivable reasons for the Iranian government failure or refusal to publish the statistics of HIV-positive people with disabilities will be provided. Studies from various countries could shed more light on the exclusion of HIV-positive people with disabilities in the media and the interplay between HIV/AIDS and disability issues.     

Beyond Orphanhood: Parental Nonresidence and Child Well‐being in Tanzania

This article used data from the Rufiji Health and Demographic Surveillance System in Tanzania to examine the influence of parental nonresidence on child survival and school entry. Using survival analysis methods, the article tested variations by parent and by cause, examining parental death, nonresidence because of parental relationship status, and migration. In general, maternal nonresidence was more consequential for child survival, whereas paternal nonresidence influences school entry. This is consistent with gendered parenting patterns in the setting. There was important variation by cause and by outcome, particularly for paternal nonresidence. Paternal nonresidence because of nonmarital birth was associated with increased risk of child death, whereas paternal migration was associated with improved survival. Paternal death and migration were associated with lower odds of school entry. This article moves beyond orphanhood to consider multiple causes of parental nonresidence simultaneously, demonstrating that parental nonresidence is not uniformly deleterious for children.     

Land markets and migration trends in Tanzania: A qualitative‐quantitative analysis

While migration has been found to enhance welfare across a range of settings, most of the literature focuses on rural‐to‐urban migrant flows. Using a unique dataset from north‐western Tanzania, this article probes an important, yet overlooked, link between land markets and rural‐to‐rural migration. A mixed‐methods approach is used to discern how these two forces are intertwined in village life. Results indicate that household decisions to migrate are particularly influenced by the ease of market‐based land access in their new communities. This suggests that labour mobility may be facilitated through the development of a well‐functioning land market.     

Managing manipulation: tools and challenges in creative collaborations with intellectually-disabled people

There has long been an ‘us’ and ‘them’ mentality when it comes to the production of disability narratives on screen, driven by an assumption that non-disabled people cannot accurately interpret the disabled experience. Given the appalling history of representations by non-disabled filmmakers, it is easy to understand why many academics and members of the disability community favour the complete control of disability content by disabled people. But this approach has failed the many compelling ‘disabled voices’ that go unheard because they do not reach audiences. The most practical solution is to forge new models of creative collaboration between disabled and non-disabled people, something I attempted to do with my PhD film, a comedy feature entitled Down Under Mystery Tour. I discovered that the most important tool in such collaborations is the utilisation and management of manipulation, one that prioritises skill and experience and best expresses the unique perspective of intellectually-disabled collaborators.     

Dementia,disability rights and disablism: understanding the social position of people living with dementia

This article considers the recent history and consequences of positioning people living with dementia in the realms of disability, disablism and disability rights. The geo-political focus is the United Kingdom and neighbouring resource-rich nations in the Global North. The first section examines the growing trend of identifying ‘dementia’ with ‘disability’, a trend fuelled by the expansion of dementia-related activism and research. The second section focuses on how researchers who have published in Disability & Society and other journals have applied the social model of disability to individuals living with dementia. The third section discusses three conceptual challenges that lie ahead for those who choose to research and theorise the dementia/disability connection. These challenges concern: theorising dementia as disability; understanding intersectionality in dementia contexts; and understanding ‘abuse’ in dementia contexts.     

Enabling and constraining family: young women building their educational paths in Tanzania

For an increasing number of African girls and women, upgrading the level of education has become a strategy for life improvement. This paper analyses the role that family plays in enabling women's education and contributes to understanding on the interconnectivity of education, work and family in women's lives in collective societies. The analysis focuses on how young Tanzanian women perceive the role of family and education in their ‘youth task’, of becoming adult. The analysis is based on interviews with seven young Tanzanian women enrolled in non-formal secondary education and nine professional women enrolled in higher education. The results show that the women were determined to pursue higher levels of education and committed to continuous self-improvement. The women identified family both as a motivator of further education and as a constraint for their individual aims and ambitions. Respecting and maintaining good family relations were given priority over individual aims and decisions. Consequently, the reasons for women to educate themselves were drawn from the overall benefits to the future of the family and the society at large. Findings suggest a major role of the family in determining the success in improving education and professional advancement of girls and women in Tanzania.     

After the MDGs: From Social Development to Technoenterprise in Tanzania

Abstract

This article explores how a development paradigm changes in Tanzania as the social sector concerns of the Millennium Development Goal era are practically and politically superseded by a commitment to private sector-driven structural transformation. Changes in the content and orientation of development do not occur as a result of evaluating what kinds of interventions are effective. They are the outcome of concerted efforts of paradigm reconstruction in which the role of development knowledge is pivotal. The process of policy shift entails a reorganisation of the architectures established to support the previous aid regime, including altering the roles of development knowledge producers and civil society organisations. New political relations between business interests and development actors support the increased influence of philanthropic foundations in determining the development agenda, which is sustained by new configurations of development knowledge. These shifts have important political implications for the kinds of policies considered developmental and the extent to which development orthodoxies can be contested.