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Lives turned upside down in COVID-19 times: exploring disabled people's experiences in 5 low-and-middle income countries using narrative interviews
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This article explores COVID-19 related experiences of disabled people in Bangladesh, Kenya, Nigeria, Nepal and Uganda. Narrative interviews generated storied responses, focussing on respondents' priorities, which enabled us to hear what was most significant for them and their families. 143 interviews were conducted online or by phone by 7 local researchers (3 disabled), with appropriate inclusive support. Nearly everyone was interviewed twice to capture the progression of impacts over time. The data was analysed thematically through a virtual participatory approach. An overarching 'subjective' theme of feelings experienced by the participants was labelled 'destabilisation, disorientation and uncertainty'. We also identified 'concrete' or material impacts. People experienced various dilemmas such as choosing between securing food and keeping safe, and tensions between receiving support and feeling increased vulnerability or dependence, with interplay between the emotions of fear, loss and hope. We found both the concept of liminality and grief models productive in understanding the progression of participants' experiences. Disabled people reported the same feelings, difficulties and impacts as others, reported in other literature, but often their pre-existing disadvantages have been exacerbated by the pandemic, including poverty, gender and impairment related stresses and discrimination, inaccessible services or relief, and exclusion from government initiatives.
Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India
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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.
Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.
Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.
Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.
Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India
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Persons with disabilities in rural India do not have the opportunity to lead a self-determined life and be included in their community as required by the convention on the rights of persons with disabilities. To investigate their experience of living everyday life and the amount of agency they are able to exercise, in-depth interviews were undertaken. The Capability Approach (CA) was used to ana- lyse the situation that was seen in terms of outcome of the interplay between internal and external factors resulting in loss of agency. The results show that the dependency they experience due to lack of adequate support to undertake activities and being completely dependent on the family places them in a vicious circle of ‘self-worthlessness’. Reducing the dependency disabled people face and chang- ing perceptions of the community towards disability may break this circle.
The social and human rights models of disability: towards a complementarity thesis
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This article aims to reorient thinking about the relationship between the long-standing social model of disability and the rapidly emerging human rights model. In particular, it contests the influential view that the latter develops and improves upon the former (the improvement thesis) and argues instead that the two models are complementary (the complementarity thesis). The article begins with a discursive analysis of relevant documents to investigate how each of the two models has been used in the crafting and monitoring of the UN Convention on the Rights of Persons with Disabilities. This highlights the increasing importance of the human rights model in this policy context. It also provides examples of the operation of the two models which inform the remainder of the discussion. We then critique the comparisons between the models which underpin the improvement thesis; and, drawing on Foucault’s technologies of power and Beckett and Campbell’s ‘oppositional device’ methodology, deepen and develop this comparative analysis. The result, we argue, is that the two models have different subjects and different functions. In the human rights context, their roles are complementary and supportive.
Changes in Living Conditions of People with ID: A Follow-Up after 16 Years
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Background: The Swedish disability policy has an ambition that people with disabilities should have the possibility to live like everyone else in the community. A study in 2001 described living conditions of people with ID born 1959–1974 in Uppsala County as compared to the general population in the same age group. The results showed differences between the two groups, particularly regarding employment, finances, and social life.
Specific Aims: The aim of the present study were to explore changes in living conditions of a group of people with ID in a 16-year perspective and to compare the outcomes with changes in living conditions of the general population in corresponding age groups.
Methods: Information on the living conditions of people with ID for 40 persons who participated in the study 2001 was obtained through proxy reports at 2001 and 2017. National welfare statistics were used to obtain data on the general population. The study focus objective living conditions selected by people with ID including housing, occupation, nances, recreational and cultural activ-
ities, family and social relations, society participation, and personal safety.
Findings: The results showed clear differences in living conditions to the disadvantage of the sample of people with ID. However, no differences related to gender and level of functional limitations were identied within the study group.
Discussion: Even if the study sample is small, the study makes an important contribution to the body of existing literature because knowledge is insufficient on changes over time regarding the living conditions of people with ID in community-based residences. Such knowledge is necessary to identify patterns of equality and inequality and illustrate to what extent people with ID share welfare benefits over time.
Advancing equality - How constitutional rights can make a difference worldwide
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Combining a comparative analysis of equal rights in the constitutions of all 193 countries with inspiring stories of activism and powerful court cases from around the globe, the book traces the trends in constitution drafting over the past half century, and examines how stronger protections against discrimination have transformed lives. Looking at equal rights across gender, race and ethnicity, religion, sexual orientation and gender identity, disability, social class, and migration status, the authors uncover which groups are increasingly guaranteed equal rights in constitutions, whether these rights on paper have been translated into practice, and which nations and protections from discrimination lag behind
Tensions and unity in the struggle for citizenship: Swedish disability rights activists claim ‘Full Participation! Now!’
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This article analyses the claims of contemporary disability rights activists mobilising in a context where de facto second- class citizenship co-exists with legal and political declarations about the rights of disabled people. As an empirical case, it focuses on the blog ‘Full Participation.Now’, which was initiated by disability rights activists in Sweden. Drawing upon citizenship research, the article points to the tensions and dilemmas featuring the bloggers’ demand for participation and equality, as well as the challenges relative to their struggle. Although the bloggers formulate contrasting arguments, the article highlights that the activists share a common aspiration for ‘full citizenship’.
“Our children have the right to an education too”: Strategies employed by Orange Farm Caregivers of Children with Disabilities in Pursuit of the Right to a Basic Education
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Purpose: This paper aims to understand the agency that caregivers who participated in a CBR empowerment component programme exercised, in order to promote the rights of their children with disabilities to a basic education.
Methods: An interdisciplinary theoretical framework and qualitative methodology were used to examine the agency and the opportunity structures within which the caregivers operate. Focus group discussions, case study interviews and secondary Programme data were analysed using manual thematic analysis.
Results: Thousands of children with disabilities in South Africa are effectively denied the right to a basic education as a result of discriminatory norms, stigmatising discourses and unjust power relations. Yet, a group of caregivers have successfully advocated for their children with disabilities in the township of Orange Farm, Gauteng. Their lobbying has contributed to the establishment, by the State, of a new school.
Conclusion and Implications: The findings suggest that human rights advocacy movements, as well as disability organisations, would do well to recognise and encourage the power and agency possessed by caregivers of children with disabilities. Catalysing civic action and providing opportunities for active citizenry and self-help seem to nurture increased efficacy and competence at navigating systems and accessing rights. While advocacy organisations may act as proxy agents, direct and collective agentic strategies should be nurtured.
In implementing inclusive education, policy makers and the Department of Education should recognise the role that caregivers of children with disabilities can play, and the potential contribution that their motivation, resourcefulness, and disability-related knowledge can make.
China’s Mental Health Law: Analysis of Core Concepts of Human Rights and Inclusion of Vulnerable Groups
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Purpose: The aim of this research is to assess China’s first Mental Health Law in terms of Core Concepts of Human Rights and equitable coverage of Vulnerable Groups.
Methods: The EquiFrame analytical tool provided the framework for evaluation of the inclusion of Core Concepts of Human Rights as well as Vulnerable Groups in the Law.
Results: China’s Mental Health Law scored 83% for Core Concept coverage, with a Core Concept Quality score of 76%. The Law had a 42% score for Vulnerable Groups coverage. This gave the Law an overall score of “Moderate” in terms of Human Rights coverage.
Conclusions: China’s Mental Health Law is a landmark document providing the country’s first ever legal framework for mental health. While the Law scores high on level commitment in Core Concepts of Human Rights, the potential for equitable protection would be enhanced by increased inclusion of Vulnerable Groups.
Limitations: Further analyses of health and social policies in the People’s Republic of China from a Human Rights perspective would provide a deeper understanding of the Law in context.
Understanding the Lives of Caregivers of Children with Cerebral Palsy in rural Bangladesh: Use of Mixed Methods
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Cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, yet support and rehabilitation for this group is limited. Understanding the impact of cerebral palsy at family level is important forthe development of appropriate interventions.
Purpose: This study aims to explore the impact on the lives of caregivers of children with cerebral palsy.
Methods: The study used mixed methods. The PedsQLTMFamily Impact Questionnaire Module was administered to the main caregivers in 135 families with a child with cerebral palsy and 150 families that did not have a child with a disability, from the same villages. In-depth interviews and observations were undertaken with 10 families, and 2 focus group discussions were conducted with representatives from 14 parent/caregiver groups. The project was conducted from April 2011- April 2013. Data collection was from September 2011- Dec 2012.
Results: The mean overall and sub-scale PedsQLTM scores were significantly poorer (p<0.001) for caregivers of a child with cerebral palsy compared to scores from families that did not have a child with disability. Caregivers reported high levels of stress, anxiety, isolation, stigma, physical tiredness, and lack of time to complete everyday tasks. Knowledge and understanding about cerebral palsy was generally low.
Conclusion: This study demonstrates the particular vulnerability of families of children with disabilities in resource-limited settings. It reveals the extent of the impact on the caregivers. Interventions therefore need to be holistic, addressing the well-being and empowerment of caregivers as well as children.
Financial Access to Healthcare among Persons with Disabilities in the Kumasi Metropolis, Ghana
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Purpose: According to the World Health Organisation, 10% to 15% of the population of every developing country lives with disability. This amounts to about 2.4 - 3.6 million Ghanaians with disability. Since their contribution is important for the development of the country, this study aimed to assess the financial access to healthcare among persons with disabilities in the Kumasi Metropolis of Ghana.
Methods: A cross-sectional study, involving administration of a semi- structured questionnaire, was conducted among persons with all kinds of disabilities (physically challenged, hearing and visually impaired) in the Kumasi Metropolis. Multi-stage sampling was used to randomly select 255 persons with disabilities from 5 clusters of communities - Oforikrom, Subin, Asewase, Tafo and Asokwa. Data analysis involved descriptive and analytical statistics at 95% CI using SPSS software version 20.
Results: There were more male than female participants, nearly one-third of them had no formal education and 28.6% were unemployed. The average monthly expenditure on healthcare was GHC 21.46 (USD 6.0) which constituted 9.8% of the respondents’ income. Factors such as age, gender, disability type, education, employment, and whether or not they stayed with family members had significant bearing on the average monthly expenses on healthcare (p<0.05).Transportation cost, the travel distance to facilities, and the regular sources of payment for healthcare, had significant relationship with access to healthcare (p<0.05). Although about 63.5% of the respondents used the National Health Insurance Scheme as the regular source of payment for healthcare, 94.1% reported that sources of payment did not cover all their expenses and equipment.
Conclusion: Financial access to healthcare remains a major challenge for persons with disabilities. Measures to finance all healthcare expenses of persons with disabilities are urgently needed to improve their access to healthcare.
Towards an Inclusive Society in Cameroon: Understanding the Perceptions of Students in University of Yaounde II about Persons with Disabilities
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Purpose: Disability cuts across every society and all spheres of life. For an inclusive society, it is important to understand people’s perceptions about persons with disabilities. However, there seems to be limited information, particularly about the perceptions of students who are the generation of future policy-makers. This study examines the perceptions of students in the University of Yaoundé II about persons with disabilities in Cameroon.
Methods: A cross sectional study design using quantitative methods was employed with a sample of students at the University of Yaoundé II. A questionnaire was used to gather information from 500 students selected by simple random sampling. The data analysis involved descriptive and inferential statistics at 95% CI.
Results: Among the participants, 51.8% were males, 89.2% were single and the average age was 24.9 years. Findings showed that 69.8% did not know about the actual population of persons with disabilities in Cameroon, though 14.6% had relatives with disabilities. None of the students perceived disability as a contagious condition, and 79.8% agreed that education had influenced their perceptions about persons with disabilities. Gender and education level had significant relationship with changes in perception (OR=1.8; p=0.01 and OR=1.91; p=0.04). However, 13.5% were unwilling to work with a person with disability in the future.
Conclusion: The findings suggest that issues of disability have not been taken into consideration in Cameroon. Therefore, there is the need for education and sensitisation of the general population towards disability. Additionally, policy- makers should factor persons with disabilities into national strategic plans, in order to ensure an inclusive society.
Disability, gender, and employment relationships in Africa: The case of Ghana
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The exploratory quantitative study sought to develop an understanding about the relationships among disability, gender and employment in Northern Ghana. A total of 110 individuals with disabilities (20–60 years) from various disability groups participated in the study. The results indicate that many persons with disabilities are unemployed, the majority being women. Discrimination is cited as the greatest barrier to the employment of persons with disabilities, particularly women. The majority of persons with disabilities, typically women, live in poverty; given that some are unemployed and those who are employed worked mostly in marginal, seasonal and menial jobs. Persons with disabilities also experience several challenges on the job, including negative perceptions about their capabilities, discrimination and exclusion, irrespective of the employment sector and disability type. Educational interventions such as workshops, documenting and showcasing success stories of persons with disabilities could be helpful to reduce negative perceptions about their capabilities as well as discrimination against them. Government intervention to support persons with disabilities with start-up capital and funding for formal education is also recommended as these two elements were identified respectively as barriers to self-employment and employment in the public/private sectors. Government interventions to create educational opportunities for persons with disabilities are essential given that lower educational attainment affect their employment.
A Comparative Analysis of Institutional Capacities for Implementing Disability Policies in East African Countries: Functions of National Councils for Disability
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During the “African Decade of Persons with Disabilities (2000-2009)”, East African countries witnessed significant achievements, especially in the development of law, collection of statistics and in funding. However, many persons with disability are still marginalised from opportunities in education, healthcare and employment.
Purpose: With the pre-supposition that the lack of institutional capacities for implementing disability policies is the one major stumbling-block which hinders widespread delivery of social services to persons with disabilities in low-income countries, this study makes a comparative analysis of institutional capacities in the disability sectors of Uganda, Kenya and Tanzania.
Method: The research methods adopted were a literature survey and a field survey. The framework for analysis consists of: 1) capacities and functions of disability units in central governments, 2) relationships between central and local governments in the disability sector, and 3) relationships between governments and organisations of persons with disability (DPOs). Special attention is paid to the status, roles and functions of national councils for disability (NCDs), the independent statutory bodies recently established in each of the three countries, with clear authority and duties for the implementation of disability policies. The NCDs enable multi-sectoral stakeholders to be involved in the implementation of disability policies; therefore, positive relationships between the governments and DPOs are essential for the smooth functioning of the NCDs.
Results: While the result of the field survey in Tanzania reveals several effective approaches for the smooth operation of the NCD, further study is needed to verify whether these approaches would be applicable to other East African countries such as Kenya and Uganda.
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