Peer reviewed resources
This is a database of resources from open-access peer reviewed journals.
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Being black in a white skin: Beliefs and stereotypes around albinism at a South African university
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Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.
Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.
Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.
Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.
Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.
Deaf identities in a multicultural setting: The Ugandan context
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Often located far apart from each other, deaf and hearing impaired persons face a multiplicity of challenges that evolve around isolation, neglect and the deprivation of essential social services that affect their welfare and survival. Although it is evident that the number of persons born with or acquire hearing impairments in later stages of their lives is increasing in many developing countries, there is limited research on this population. The main objective of this article is to explore the identities and experiences of living as a person who is deaf in Uganda. Using data from semi-structured interviews with 42 deaf persons (aged 19–41) and three focus group discussions, the study findings show that beneath the more pragmatic identities documented in the United States and European discourses there is a matrix of ambiguous, often competing and manifold forms in Uganda that are not necessarily based on the deaf and deaf constructions. The results further show that the country’s cultural, religious and ethnic diversity is more of a restraint than an enabler to the aspirations of the deaf community. The study concludes that researchers and policy makers need to be cognisant of the unique issues underlying deaf epistemologies whilst implementing policy and programme initiatives that directly affect them. The upper case ‘D’ in the term deaf is a convention that has been used since the early 1970s to connote a ‘socially constructed visual culture’ or a linguistic, social and cultural minority group who use sign language as primary means of communication and identify with the deaf community, whereas the lower case ‘d’ in deaf refers to ‘the audio logical condition of hearing impairment’. However, in this article the lower case has been used consistently.
Project Re•Vision: disability at the edges of representation
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The representational history of disabled people can largely be characterized as one of being put on display or hidden away. Self-representations have been a powerful part of the disability rights and culture movement, but recently scholars have analysed the ways in which these run the risk of creating a ‘single story’that centres the experiences of white, western, physically disabled men. Here we introduce and theorize with Project Re•Vision, our arts-based research project that resists this singularity by creating and centring, without normalizing, repre- sentations that have previously been relegated to the margins. We draw from body becoming and new materialist theory to explore the dynamic ways in which positionality illuminates bodies of difference and open into a discussion about what is at stake when these stories are let loose into the world.
Twenty-five years of Community Living: Changes in Support Staff Perceptions
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Purpose: The attitudes of support staff towards people with intellectual disability can greatly impact upon an individual’s quality of life and level of social inclusion. However, there are few studies that examine how perceptions and beliefs have changed within one organisation over the past few decades; a period during which there have been major social and government policy changes including deinstitutionalisation, inclusive education and the introduction of the United Nations Convention on the Rights of Persons with Disabilities. In conjunction with a 25th anniversary review of a community-living project in rural Australia, the current research replicated a study from 1987 that examined attitudes of staff with respect to people with intellectual disability, and thematically compared the findings of the two questionnaires.
Method: In 1987, a purpose-designed questionnaire was developed and completed by 15 direct care staff. This 10-item tool asked for basic demographic information and for the participants’ perceptions of people with intellectual disability and their own work roles in the disability sector. This tool was replicated in 2013 and was again completed by 15 direct care staff from the same organisation.
Results: The thematic analysis indicated a number of differences between the 1987 and 2013 cohorts in regard to their attitudes. The wide acceptance of the rights of people with intellectual disability was one key change. There was an age separation found within the 2013 cohort, with older participants (> 50 years of age) more likely to display similar attitudes to the 1987 group than the younger participants (<30 years old). Dealing with the problem of ageing-related issues, something that was not obvious 25 years ago, was now considered of major importance. There was evidence that disability support was increasingly recognised as a valid career choice, with a substantial difference in motivation found between the two age groups. Across both cohorts, direct exposure to the realities of the job was seen to be the best training for new employees.
Conclusions: The past 25 years have seen positive developments in both social acceptance and expectations for people with disabilities. Individuals are now viewed in a realistic but more positive light. As an exemplar of this change, concerns about individuals entering a consenting sexual relationship have changed dramatically, and what was once an issue of major concern is now no longer raised. While the training provided to staff has changed significantly over the past 25 years, on-the-job exposure to people with intellectual disability, combined with support from peers, is still perceived as vital for developing a quality support network.
The Development of a New Quality of Life Questionnaire for Children with Hearing Loss - The Impact of Hearing Loss on Children (IHL-C): Field Testing and Psychometric Evaluation
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Purpose: To report the development of user-defined, multidimensional, psychometrically sound Quality of Life questionnaires – Impact of Hearing Loss on Children – IHL-C 69 and Brief IHL-C for children with hearing loss, in two languages -Tamil and English.
Methods: 421 problem statements from previous qualitative studies were reduced to a 220-item questionnaire with 7 domains (educational implications, social integration, psycho-social well-being, speech, language and communication, family relationships, leisure time activities and general functioning). After field testing, the domain of leisure time activities was dropped, resulting in a 103-item self-administered questionnaire with 6 domains. This 103-item questionnaire was translated from Tamil to English, and self-administered by children with hearing loss (11-18 years of age) in Special schools (n=100) and Integrated schools (n=100), as well as by normal controls in Integrated schools (n=200). Standard methods were used for item reduction and to evaluate psychometric properties.
Results: Psychometric item reduction produced the 69-item IHL-C69 (long version) and 48- item Brief IHL-C (brief version) questionnaires. Psychometric evaluation showed that all the domains of both the questionnaires had good acceptability, high internal consistency (alpha >0.80; intrinsic validity >0.80) and test-retest reliability (0.86).The questionnaires significantly distinguished between the children with hearing loss and the normal controls. The domains of both the questionnaires showed moderate evidence of convergent validity, and discriminant validity derived through hypotheses testing showed mixed results. The translation validity was also determined.
Conclusion: The IHL-C 69 and Brief IHL-C are reliable and valid user-defined, multidimensional questionnaires, available for the first time in both Tamil and English languagesin Tamil Nadu, India. Designed to analyse the impact of hearing loss and to determine the quality of life of children with hearing loss, the questionnaires could be used to prioritise the goals for rehabilitation intervention for these children.
Nigerian Realities: Can we ignore Traditional Leadership in developing successful CBR?
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Purpose: To study the role of traditional leaders (Sarakuna) who provide a form of social welfare for persons with disabilities in the Hausa society of Northern Nigeria. From the results of this study, lessons are derived for cooperation with Sarakuna in (emerging) Community Based Rehabilitation programmes.
Methods: A literature study was done using different (non-)electronic sources. In addition, 26 semi-structured interviews were conducted with different stakeholders (e.g., non-governmental organisations, disabled people’s organisations), and 8 focus group discussions were held with (leaders of) persons with a disability. Question-led analysis was utilised by considering 4 dimensions: rehabilitation outcomes, rehabilitation services, involvement of beneficiaries, and social acceptability.
Results: Not much literature is available on the role of traditional leadership in rehabilitation programmes and social welfare. Nevertheless, this study found indications that traditional leadership is still present in contemporary NorthernNigeria. Some Sarakuna improve the socio-economic position of persons with disabilities by functioning as mediators and by their ability to provide social insurance. Their cooperation with multiple stakeholders enables them to distribute food and clothes. Also, since they possess essential information, NGOs are helped to access the community of persons with disabilities. Sarakuna are in a position to promote the inclusion and rehabilitation of persons with disabilities, but often lack necessary skills and training; yet, Community Based Rehabilitation programmes often ignore them.
Conclusions and Implications: Community Based Rehabilitation programmes should take better note of social contexts and therefore should also work in the specific context of traditional leadership. In this way, rehabilitation programmes are more likely to meet the expectations of persons with disability.
Effects of Motor Imagery on Upper Extremity Functional Task Performance and Quality of Life among Stroke Survivors
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Purpose: To assess the effects of Motor Imagery programme on upper extremity functional task performance and quality of life among stroke survivors.
Method: Thirty people who were diagnosed with stroke, were selected from the Department of Occupational Therapy, SVNIRTAR, Odisha, India, and consecutively assigned to control (n=15) and experimental (n=15) groups. The control group received conventional occupational therapy only, and the experimental group received conventional occupational therapy combined with Motor Imagery programme. Upper Extremity Motor Activity Log (UE-MAL) and Stroke Specific Quality Of Life Questionnaire (SSQOL) were used for assessment, before and after the intervention.
Results: The experimental group showed significant improvement compared to the control group (P<.004 & P<.001). The implication is that there is a good relationship between upper extremity functional task performance and quality of life (r= 0.928).
Conclusions: The Motor Imagery programme is a simple and very cost-effective treatment used in Occupational Therapy practice. It can be easily taught and learnt. The study concludes that Motor Imagery programme is effective in improving upper extremity functional task performance and quality of life among stroke survivors.
Variables Influencing Emotional Intelligence of Visually Impaired Students in Higher Education
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Purpose: Emotional Intelligence is a set of abilities which enables people to understand emotions more accurately and solve problems in their emotional lives. The present study attempted to identify variables influencing emotionalintelligence (EI) of visually impaired students studying in higher educational institutions.
Method: A survey method of descriptive research design was adopted. 60 visually impaired students pursuing higher education were selected through purposive sampling. Their emotional intelligence (EI) was measured using ‘Mangal Emotional Intelligence Inventory’ (MEII). The collected data was analysed using differential and descriptive statistics to identify the influence of selected demographic variables on EI.
Results: The study results revealed that demographic variables did not have significant impact on the EI of students with visual impairment studying in higher educational institutions, except at the onset of visual impairment. Those who had lost their vision later in life seemed to have more EI than those who were congenitally blind.
Conclusion: Suitable training programmes should be planned to promote the emotional intelligence of those who are visually impaired since birth, because most behaviour is learnt through visual clues.
Barriers in Using Assistive Devices among a Group of Community-dwelling Persons with Lower Limb Disabilities in Sri Lanka
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Purpose: Rehabilitation with assistive devices is of great benefit to people with limb disabilities, enabling them to lead independent and productive lives. While assistive devices improve the quality of life of persons with lower limb disabilities by facilitating activities of daily living, there are also many barriers to their use. This study aims to describe these barriers among community-dwelling persons with lower limb disabilitiesin central Sri Lanka.
Methods: A community survey was conductedmong adults between 18 and 59 years of age, to find persons with lower limb disabilities in Kandy Municipal Council area, in the central province of Sri Lanka. This was followed by purposive sampling to select a sub-sample of 12 individuals with unilateral lower limb disabilities for a qualitative study using in-depth interviews. Unilateral lower limb disabilities were identified using a clinical examination and World Health Organisation Disability Assessment Schedule 2.0 (WHODAS 2.0). A qualitative thematic content analysis was used to evaluate the interview text.
Results: Participants described several barriers in using assistive devices, such as unaffordable assistive technology like wheelchairs and artificial limbs, unavailability of appropriate assistive technology, difficulties associated with repair and maintenance, and problems in accessibility. Limited knowledge of modern technology also restricted their choice of better devices. Psychological barriers and stigma in using assistive devices directly affected their social lives and day-to-day activities as well.
Conclusion and Implications: People with lower limb disabilities face multiple barriers in using assistive devices. These barriers need to be addressed by improving local infrastructure and accessibility facilities, public awareness and funding, and ensuring continuous supply and maintenance services.
The influence of cultural beliefs on the utilisation of rehabilitation services in a rural South African context: Therapists’ perspective
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Explore the cultural beliefs that affect the utilisation of rehabilitation services in a rural community in South Africa from the therapists’ perspective.
Young people with intellectual disability—The role of self-advocacy in a transformed Swedish welfare system
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A growing number of young people in Sweden with intellectual disability have organized themselves during the last 15 years in self-advocacy groups for socializing, empowerment, and expressing opposition to the norms and attitudes in a society that labels them as disabled. At the same time, the Swedish welfare system has transformed dramatically with processes of far-reaching individualization, closure of the major institutions, decentralization of responsibility from the state to local governments, and an emerging welfare market where service users are turned into customers. The aim of this article is to analyse and discuss the significance of self-advocacy in the new welfare context. Data were collected over a period of more than 10 years using repeated interviews with members of two self-advocacy groups and participation observations. Findings suggest that participation in self-advocacy groups opens up members for increasing health and well-being through new roles and identities, and it strengthens their control over everyday life. Support is still needed, however, but in new ways; otherwise, the restrictions of the institutions will simply be reconstructed in the new welfare system.
Inclusive Education at the crossroads in Ashanti and BrongAhafo regions in Ghana: Target not achievable by 2015
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Purpose: Inclusive education, widely acknowledged as an alternative method of making education accessible to children with special needs, has been piloted for 10 years in selected districts of Ghana. This article aims to discuss the feasibility of implementing it throughout the country, by assessing the inclusive education programme piloted in Ghana’s Ashanti and BrongAhafo regions.
Method: One round of in-depth interviews was conducted with 31 participants, to collect data on the issue under study. Participants were officials of Special Education at the national Head Office, District Special Education Coordinators, Resource Teachers, Headmasters and Classroom Teachers of inclusive education.
Results: The study findings indicated that the pilot programme did not live up to expectations when faced with challenges such as inaccessible environments, lack of resources, lack of funds, lack of qualified teachers, poor teaching methods and negative attitudes of teachers towards children with disabilities.
Conclusion: It is very unrealistic to commence inclusive education programmes unless practical measures are put in place, such as adequate funding from the government and provision of sufficient resources for inclusive schools.
Disability Inclusion in Primary Health Care in Nepal: An Explorative Study of Perceived Barriers to Access Governmental Health Services
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Purpose: Persons with disabilities face additional barriers in accessing primary healthcare services, especially in developing countries. Consequently the prevalence of secondary health conditions is higher among this population. This study aims to explore the perceived barriers to access primary healthcare services by persons with disabilities in the Western region of Nepal.
Methods: 10 primary healthcare providers and 11 persons with disabilities (physically or visually impaired) were selected by non-governmental organisations from the hilly and lower areas. Based on the International Classification of Functioning and the health accessibility model of Institute of Medicine, semi-structured interviews were conducted and analysed using analytical induction.
Results: In general, healthcare providers and persons with disabilities reported similar barriers. Transportation and the attitude of family members and the community were the main environmental barriers. Even with assistive devices, people still depend on their families. Financial barriers were lack of funds for health expenses, problems in generating an income by persons with disabilities themselves, and the low socio-economic status of their families. Personal barriers, which affect help-seeking behaviour in a major way, were most often mentioned in relation to financial and socio-environmental barriers. Low self-esteem of the person with disability determines the family’s attitude and the motivation to seek out healthcare. Lastly, poor public awareness about the needs of persons with disabilities was reported.
Conclusions: Besides the known physical environmental barriers, this study found several environmental, financial and personal barriers that also affect access to primary healthcare. In particular, the attitudes of families and poor financial conditions seem to be interrelated and greatly influence help-seeking behaviour.
Commuting and communication: An investigation of taxi drivers’ experiences, attitudes and beliefs about passengers with communication disorders
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Background: One of the most popular means of public transport within South Africa is mini-bus taxis.
Objectives: As South Africa is made up of diverse cultures, religions and beliefs, the aim of this study was to explore Johannesburg based taxi drivers’ experiences of beliefs about, and attitudes towards passengers who have a communication disability.
Method: Semi-structured interviews were conducted with 10 mini-bus taxi drivers.
Results: Interviews revealed that almost all the taxi drivers had encountered passengers with a communication disability, and had an awareness of passengers with a hearing disability as opposed to a speech disability. Furthermore mini-bus taxi drivers generally held a positive view of their passengers with a communication disability.
Conclusion: Study findings contribute to existing literature within the fields of speech pathology and audiology, advocacy groups and policy makers, particularly research studies on participation experiences of persons with communication disabilities related to transportation access. The results of the study should also provide a foundation for disability policy development initiatives with the aim of increasing levels of public awareness.
Interrogating the impact of scientific and technological development on disabled children in India and beyond
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Products of scientific and technological developments are emerging at an ever increasing speed whereby these developments impact the daily life of humans in numerous ways. We focus for this paper on two classes of emerging products; one being social robots and the other being products that are envisioned to increase the cognitive abilities of humans beyond the species-typical and their impact on aspects of childhood such as education and self-identity formation. We analyse the utility and impact of these two classes of products through the lens of the alternative report on India to the Convention on the Rights of the Child (CRC) Committee on the Rights of Children authored by the by National Disability Network of India and the lens of ability expectations. We posit that the discourses around these two classes of emerging products do not address the problems the alternative report raises, but could heighten the problems identified by the report. We believe the two classes of products highlight the need for ability expectation governance.
Disability and the Global South (DGS), 2015, Vol. 2 No. 2
Disability and Forced Migration: Critical Intersectionalities
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The vast majority of the world’s displaced people are hosted in the global South, in the poorest countries in the world. This is also a space with the highest numbers of disabled people, many of who live in extreme and chronic poverty. This poverty, alongside deprivation, wars, conflict, and environmental disasters is what drives people to flee, in search of security. This includes disabled people. In spite of this, this population (disabled forced migrants) continues to be cast in a shadow, of epistemological, ontological and practical invisibility. It is hardly theorised in forced migration studies and rarely contemplated in humanitarian intervention. The lives of disabled forced migrants are cast aside in a Eurocentric disability studies that remains global North-centric and focused, while Southern contexts and histories and the geopolitics that envelope them, are forgotten or never known. Migration theory grows without the disabled person, disability studies without the migrant, and practice without the disabled migrant. In this paper, we explore the disability/forced migration nexus with a view to understanding some of the critical intersectionalities that emerge, and their implications for theory and practice. We trace elements of the forced migration trajectory, from exodus, to crossing international borders, to life in protracted refugee camps, the use of networks and smugglers, to those related to national and human security. We argue that forced migration studies, as well as humanitarian practice continue to be premised on and adopting an ableist approach focused on heteronormative productive bodies, while disability studies, with a corpus of work premised on an assumption of citizenship, has failed to critically engage with issues of sovereignty, borders and bodies that lie beyond the protection of the Nation State. In this paper, we also question and contest dominant and hegemonic frames that are historically contextualized, alongside discourses and structures that not only produce forced migration, but also serve to perpetuate the global divide and inequalities. We conclude by calling for a critical interrogation of theoretical perspectives in both forced migration and disability studies, in policy and humanitarian action, and to work towards a praxis geared towards social justice for disabled forced migrants.
Disability and the Global South (DGS), 2015, Vol. 2 No. 1
Disability and displacement in times of conflict: Rethinking migration, flows and boundaries
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In this paper, I try to understand the changed relationship of conflict to migration as seen through a lens of fluidity and what that entails for disabled people - particularly what boundaries and borders are at stake. Secondly, I investigate migration through the idea of ‘ontological insecurity’ and try and link this to ideas of (dis)/ableism. Then, I attend to what happens when boundaries are enforced in the humanitarianism of a refugee camp, to explain how territoriality of such a setting unmakes people into ‘strangers’. I show how the structural violence of poverty leads to a necessary fluidity and illustrate how people use this to combat the ‘unmaking’ of the self and reinsert themselves back into social life and relationships. Lastly, I examine the place of biolegal politics in medical humanitarianism and explore the relationship to ‘necropolitics’ and its consequences.
Disability and the Global South (DGS), 2015, Vol. 2 No. 1
‘Ask us what we need’: Operationalizing Guidance on Disability Inclusion in Refugee and Displaced Persons Programs
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Persons with disabilities remain one of the most vulnerable and socially excluded groups in any displaced community. Barriers to accessing humanitarian assistance programs increase their protection risks, including risk of violence, abuse and exploitation. Women’s Refugee Commission has been supporting the United Nations High Commissioner for Refugees and implementing partners to translate guidance on disability inclusion into practice at field levels through the provision of technical support to eight country operations. In the course of the project, WRC has consulted with over 600 persons with disabilities and care-givers and over 130 humanitarian actors in displacement contexts. Key protection concerns identified include a lack of participation in community decision making; stigma and discrimination of children and young persons with disabilities by their non-disabled peers; violence against persons with disabilities, including gender-based violence; lack of access to disabilityspecific health care; and unmet basic needs among families of persons with multiple impairments. Suggested strategies to further advance disability inclusion in humanitarian programming include: strengthening identification of protection risks and case management services for persons with disabilities; facilitating contextspecific action planning around key guidelines; and engaging the disability movement in advocacy on refugee issues.
Disability and the Global South (DGS), 2015, Vol. 2 No. 1
Disability-inclusive healthcare in humanitarian camps: Pushing the boundaries of disability studies and global health
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A significant proportion of forced migrants live in humanitarian camps located in remote regions of the global South. Disabled persons have been historically neglected within camp programs across all service sectors, especially healthcare. This paper describes an exploratory research study on healthcare access for forced migrants with disabilities in the context of humanitarian camps. Based on the methodological framework of rapid ethnography, the research involved guided tours, community mapping exercises, ethnographic observations, and semi-structured interviews in a refugee camp in southern Africa. Additional key informants from other sites were interviewed remotely using a convenience sampling strategy. Several important insights emerged from the research including: misperceptions about the health-related needs of disabled persons, their specialized health needs falling outside the ‘social minimum’ of humanitarian healthcare, and concerns about distributional ethics in relation to disability-inclusive healthcare. The research also highlighted barriers and strategies for addressing disability-specific health needs given significant resource constraints in humanitarian camps. These findings are discussed in light of practical and theoretical challenges in the fields of disability studies and global health.
Disability and the Global South (DGS), 2015, Vol. 2 No. 1