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Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India

GUPTA, Shivani
DE WITTE, Luc P
MEERSHOEK, Agnes
2020

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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.

Standing alone: sexual minority status and victimisation in a rural lower secondary school

ODENBRING, Ylva
2019

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Studies worldwide indicate that sexual minority students often face different forms of bullying in everyday life at school, and young people growing up in communities with conservative values, such as in rural areas, are often in a particularly vulnerable position. Nonetheless, there is an absence of studies addressing the everyday lives of sexual minority students in rural schools. Drawing on interviews with students in the ninth grade of a rural lower secondary school in Sweden, the current study has investigated experiences of violence and harassment routinely directed at sexual minority students at school. The results indicate that the local gender regime is strongly framed by heteronormative values that position non-heterosexual students as the Other. Sexual minority students are exposed to homophobic name-calling on a daily basis, and threats and physical violence are also common. To fit in and to ‘survive’ in school, sexual minority students are forced to accept the homophobic name-calling and are sometimes also forced to physically fight back. This study concludes that it is important that schools address issues around violence directed towards non- heterosexual students, and that ways to create a more inclusive and safe school environment be identified.

The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

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Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.

 

Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.

 

Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.

 

Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.

 

Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

 

 

African Journal of Disability, Vol 8, 2019

Innovate for Inclusion. Four cases of application of the social innovation lab methodology to enhance disability inclusion in mainstream settings

MAARSKE, Anneke
NEDERVEEN, Matthijs
BAART, Judith
2019

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This publication reflects back on four co-design processes undertaken by Light for the World’s Disability Inclusion Lab during the past few years. These different journeys in solution development have demonstrated the power of this methodology to create genuine inclusion in livelihood programming while striving to empower persons with disabilities to achieve economic success. In this publication the social innovation lab methodology is described as a unique approach to inclusive programming, highlighting four cases: The Livelihood Improvement Challenge in Uganda, the lab in the EmployAble programme in Ethiopia, the AgriLab in Cambodia, and the InBusiness pilot in Kenya. Lessons learnt are described.

Societal attitude and behaviours towards women with disabilities in rural Nepal: pregnancy, childbirth and motherhood

DEVKOTA, Hridaya R.
KETT, Maria
GROCE, Nora
January 2019

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This study reviews the attitudes and behaviours in rural Nepalese society towards women with disabilities, their pregnancy, childbirth and motherhood. Society often perceives people with disabilities as different from the norm, and women with disabilities are frequently considered to be doubly discriminated against. Studies show that negative perceptions held in many societies undervalue women with disabilities and that there is discomfort with questions of their control over pregnancy, childbirth and motherhood, thus limiting their sexual and reproductive rights. Public attitudes towards women with disabilities have a significant impact on their life experiences, opportunities and help-seeking behaviours. Numerous studies in the global literature concentrate on attitudes towards persons with disabilities, however there have been few studies in Nepal and fewer still specifically on women.

A qualitative approach, with six focus group discussions among Dalit and non-Dalit women without disabilities and female community health volunteers on their views and understandings about sexual and reproductive health among women with disabilities, and 17 face-to-face semi-structured interviews with women with physical and sensory disabilities who have had the experience of pregnancy and childbirth was conducted in Rupandehi district in 2015. Interviews were audio-recorded, transcribed, and translated into English before being analysed thematically.

 

BMC Pregnancy Childbirth 19, 20 (2019)

https://doi.org/10.1186/s12884-019-2171-4

Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal

FERNANDES, Helen Lea
CANTRILL, Stephanie
SHRESTHA, Ram, Lal
RAJ, Rachel, Belda
ALLCHIN, Becca
KAMAL, Raj
BUTCHER, Nicole
GRILLS, Nathan
2018

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Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.

 

Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.

 

Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.

 

Conclusions and Implications: This study underscores the need for integrated community-based approaches that are multisectoral, inclusive of family, and strengthen community responses. Photovoice was also shown to be a feasible research methodology for providing insights into the lived experience of people with psychosocial disability and for fostering their empowerment

Disability and vocational rehabilitation in rural settings

HARLEY, Debra
et al
2018

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A graduate student textbook offered in 39 chapters, each with different authors and subjects. Abstracts, test questions and citations are freely available on-line. Full text is charged for. The book surveys rehabilitation and vocational programs aiding persons with disabilities in remote and developing areas in the U.S. and abroad. Contributors discuss longstanding challenges to these communities, most notably economic and environmental obstacles and ongoing barriers to service delivery, as well as their resilience and strengths. Considerations are largely of the US but there is a chapter on each of Asia and Pacific region, Australasia, Canada, Mexico, India, Turkey, Colombia and the UK. 

 

Rights to water and sanitation for people with disabilities in Madagascar

VEROMAMINIAINA, Edith
RANDRIANARISOA, Ridjanirainy
December 2016

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"This paper illustrates the experiences of the Platform For People with Disabilities (PFPH), working with the support of WaterAid, to highlight and address the gaps in the realisation of the rights of people with disabilities in Madagascar. The focus has been on engaging the government on the National Inclusion Plan for people with disabilities, which includes water, sanitation and hygiene (WASH). This pilot project was designed to increase access to safe WASH for people with disabilities through a human rights based approach. It focuses on strengthening the capacities of rights holders, as well as the capacity and the political will of duty bearers to fulfil their obligations towards the progressive realisation of rights. The project has strengthened the capacity of the PFPH to advocate for their rights and engage with government on all areas of their rights, although an increase in actual WASH provision is limited by the government’s lack of capacity and resources". 

7th RWSN Forum “Water for Everyone”, 7 ème Forum RWSN « L’eau pour tous » 29 Nov - 02 Dec 2016, Abidjan, Côte d’Ivoire

Enhancing public sectors’ capacity for inclusive economic participation of disabled youth in rural communities

NED, Lieketseng
LORENZO, Theresa
2016

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Background: The capacity of service providers in the public sector to deliver inclusive services is essential to implement strategies that will allow the full participation of disabled youth in development opportunities in the rural context.

 

Objective: The article sets to describe the capacity of service providers in facilitating participation of disabled youth in economic development opportunities.

 

Method: An instrumental, embedded single case study informed the research design. The sample consisted of five disabled youth, four family members as well as six service providers. Data was gathered through in-depth individual interviews and focus group discussions. Data analysis was done inductively and thematically. In the discussion, the interpretation used organisational capacity elements as a framework.

 

Findings: The theme on service providers indicates their understanding of disability as still a multifaceted and a challenging issue with different orientations to service delivery based on understanding of impairment and disability. There is a dominant focus on impairment and negative attitudes.

 

Discussion: An asset building approach could facilitate awareness of capacities of disabled youth and thus shift negative attitudes to an enabling attitude. The vague strategies for youth and women that are described as inclusive are a misrepresentation of the reality of experiences of disabled youth.

 

Conclusion: An appreciative process of facilitating a holistic understanding of the needs of disabled people is needed to assist service providers to reconceptualise disability within an expansive framework.

Educational Opportunity, Post-School Life and CBR: A Multisectoral Approach in Rural Sri Lanka

Higashida, Masateru
Kumar, M R Shantha
Nakashima, Yuko
2016

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Purpose: Inclusive education and post-school life are crossover issues that cut across societal lines and therefore need a multisectoral approach. This study examines the educational opportunities of children with disability and their post-school life in rural Sri Lanka.

 

Methods: The research was implemented with multiple sectors in a rural area of the North Central Province, from January - November 2014. Mixed methods were applied as follows: surveys with children with disability aged 2 to 18 years (n=103); case studies of children with disability who dropped out of or did not attend school (n=3); semi-structured interviews with ex-students with disability who had attended special needs classes (n=13); and, informal interviews with a CBR core group officer. Data was mainly analysed with qualitative procedures.

 

Results: The study consists of 3 parts. The first part revealed that in terms of the current educational opportunities among children with disability aged 2 to 18 years, approximately 31.1% utilised educational resources whereas 38.8% were at home with no special social activities. The case studies in the second part revealed the reasons for limited educational opportunities in the area and the barriers to educational access, which included family members’ attitudes and socio-economic aspects such as poverty. The third part, consisting of semi-structured interviews with ex-students with disability who received education but did not participate in the CBR activities, revealed 3 types of post-school lifestyle: ‘time mostly spent at home’, ‘household chores’ and ‘temporary agricultural work’. The interviews also indicated other barriers to post-school participation, such as a lack of network and information, negative experiences during the schooling period, and families’ priorities. 

 

Conclusions: Inadequate educational opportunities among children with disability and barriers to post-school social participation in rural Sri Lanka are revealed. This study argues the importance of the multisectoral approach to find unidentified children as well as to conduct comprehensive programmes.

The complexity of rural contexts experienced by community disability workers in three southern African countries

BOOYENS, Margaret
VAN PLETZEN, Ermien
LORENZO, Theresa
2015

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An understanding of rural communities is fundamental to effective community-based rehabilitation work with persons with disabilities. By removing barriers to community participation, persons with disabilities are enabled to satisfy their fundamental human needs. However, insufficient attention has been paid to the challenges that rural community disability workers (CDWs) face in trying to realise these objectives. This qualitative interpretive study, involving in-depth interviews with 16 community disability workers in Botswana, Malawi and South Africa, revealed the complex ways in which poverty, inappropriately used power and negative attitudes of service providers and communities combine to create formidable barriers to the inclusion of persons with disabilities in families and rural communities. The paper highlights the importance of understanding and working with the concept of ‘disability’ from a social justice and development perspective. It stresses that by targeting attitudes, actions and relationships, community disability workers can bring about social change in the lives of persons with disabilities and the communities in which they live.

Human Rights

www.macao-tz.org
December 2014

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Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Knowledge and Beliefs about Ear and Hearing Health among Mothers of Young Children in a Rural Community in South India

NARAYANSAMY, M
RAMKUMA, V
NAGARAJAN, R
2014

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Purpose: To study the knowledge and beliefs about ear and hearing healthcare among mothers from a rural community.

 

Method: In 1 week, 6 focus group discussions were conducted across 6 villages of a district in Tamil Nadu in southern India. The participants were 60 mothers who had children below 5 years of age.

 

Results: Mothers in this rural community had information about some aspects of ear and hearing healthcare. They were aware that use of hairpins and safety- pins to clean ears was harmful; they were knowledgeable about ways to identify hearing ability (child responds to name call, verbal instructions, and startles at loud sounds); and, conditions like consanguinity and malnutrition of expectant mothers were recognised as risk factors for hearing loss. However, misconceptions also existed. The practice of pouring herbal juices to remove insects in the ear continued; there was the perception that all children with a hearing problem were “deaf”, and a lack of awareness about the possibility of partial/unilateral hearing loss. Regarding the age of identification, mothers believed that a child’s ability to speak and the ability to hear was pertinent to assess hearing. None of the mothers related normal speech development to normal hearing.

 

Conclusion: For the success of a community-based hearing screening programme, it is important to utilise the existing knowledge of the mothers, and simultaneously attempt to fill in gaps in knowledge and clarify misconceptions. These measures will facilitate greater compliance from the community in achieving the goals of early identification and early intervention for problems of hearing loss.

Knowledge Management-based Classification Method for Disability-Inclusive Business

SANO, R
CHANDARASUPSANG, T
2014

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Purpose: This study provides evidence to clarify disability inclusiveness in activities of rural business. As an alternative to the analysis method that deals with disability-inclusiveness as a vague concept, knowledge management principles were applied to propose a classification method for disability-inclusive business as an emerging concept at the community level.

 

Methods: The analysis focuses on: 1) productivity of entrepreneurs with disabilities; 2) knowledge of entrepreneurs with disabilities; and 3) understanding of customers. A total of 50 entrepreneurs with disabilities in micro and small businesses in Southeast Asia were identified in this context. Data were collected and analysed according to a story-based knowledge management approach and value chain analysis. Fuzzy logic analysis which exploited domain ontology was utilised to convert knowledge from tacit to explicit, in line with knowledge management principles. A numeric weight based on linguistic variables became available to describe each disability-inclusive business case, as well as the arrangements of fuzzy sets.

 

Results: Out of 50 cases, 7 were classified as fully disability-inclusive while 14 were classified as not disability-inclusive. Productivity of entrepreneurs with disabilities in 3 elements of the value chain, namely procurement, product/service development and distribution, was observed to be significant. The Study showed that disability-related knowledge of entrepreneurs with disabilities could contribute to business performance according to the key success factors to enhance added value. Two elements of the value chain, namely sales/marketing and customer service, are not the decisive factors to define and clarify disability-inclusiveness. 

 

Conclusion: Settings in Southeast Asia are diverse and at varying stages of economic and social development; hence the environment which promotes the disability-inclusive business concept may be inconsistent. Micro and small- scale rural businesses were tackled as a first step to evaluate comparative efforts of each case of disability-inclusive business from the viewpoint of entrepreneurs with disabilities. Therefore, in highlighting the differences, it is recommended that further research should seek to apply weighting factors depending on the individual size, contents and scale of major business areas.

Barriers to sustainable access of children and families to ART centres in rural India : a report on operations research conducted in Maharashtra and Manipur

INDIA HIV/AIDS ALLIANCE
December 2009

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This report identifies barriers that children and families face in accessing anti-retroviral therapy (ART) centres in rural India. The report also seeks to find solutions to these barriers based on an operations research conducted in Maharashtra Pradesh and Manipur. Operations research objectives: * To build an understanding among policy makers of the barriers faced by children and caregivers accessing ART services in rural communities. * To assess and highlight a basic minimum level of standards for ART centres in terms of adequacy, quality and timeliness of support needed. * To explore opportunities for linkages with state and district level departments and/or local self-governing institutions

Social movements and chronic poverty across the urban-rural divide : concepts and experiences

MITLIN, Diana
BEBBINGTON, Anthony
September 2006

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"This paper develops a series of arguments regarding the contribution of social movements to the reduction of chronic poverty in both urban and rural social contexts...The summary is divided into three sections addressing: the relevance of social movements to the chronically poor; social movements and the representation of the chronically poor; and the interaction between the state and movements of the poor, with a special focus on the influence of social movements on policy and politics...[the] discussion suggests that the power of social movements lies less in their ability to influence the specifics of policies and programmes, and rather more in their capacity to change the terms in which societies debate poverty and social change, and to influence the types of development and policy alternatives that are considered legitimate in a given social and political context"

Ben ni walen : let’s agree and take action|Mobilizing for human rights using participatory theatre

SGANGA, Cristina
VISSER, Teun
2006

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"This Guide is a basic introduction to using participatory methods for exploring human rights issues with people in rural communities to encourage human rights organisations to adopt a long-term approach to raising human rights awareness Section I presents the background to the writing of the Guide and its context. It explains the approach proposed to mobilise rural communities, and it introduces the different components of participatory research and participatory theatre methodology. Section II contains information on the range of participatory theatre methods, and provides illustrative examples of how to use them to explore human rights issues with rural communities. Background information on the specific human rights issues used as examples is also included. The guide contains basic guidelines and suggestions rather than giving step-by-step directions on how to develop programmes, and users are encouraged to adapt the methods and adjust any part of the Guide to suit their own circumstances. This guide is useful for Human right organisations, theatre directors and group, and community development organisations"

17 fact sheets on gender-related aspects of HIV/AIDS | Resource pack on gender and HIV/AIDS

UNAIDS Inter-Agency Task Team on Gender and HIV/AIDS
2005

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These fact sheets aim to provide policy makers with concise information about gender related aspects of the HIV/AIDS pandemic. They deal with core facts and issues in thematic areas and are underpinned by an analysis which clarifies how gender issues are fuelling the crisis. Each theme presents a self-contained set of issues and recommendations and many of the themes are interlinked. All of them are connected by a concern to promote a gender-enlightened and comprehensive response to HIV/AIDS and its impacts

Women inspiring women - a peer group in Sri Lanka improves the lives of people with disabilities | Moving forward : toward decent work for people with disabilities|Examples of good practices in vocational training and employment from Asia and the Pacific

PERRY, Debra A
Ed
2003

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This paper is about a Sri Lankan disabled women's organisation, founded by a disabled woman, to empower women through a support network that allows them to exercise their rights and gain access to services, skills training and self-employment. In Sri Lanka, women with disabilities have few opportunities for economic independence and most are confined to their homes, protected by their families from a society that stigmatises them, particularly in rural areas

Voices for change : rural woman and communication

BALIT, Silvia
COMMUNICATION FOR DEVELOPMENT GROUP
1999

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This book describes how, in the current climate of political and socio-economic change, communication can play a decisive role in promoting food security and rural development. By fostering a dialogue between rural people and other sectors of society, communication processes can empower both women and men to provide information and knowledge as a basis for change and innovation. It can give rural women a voice to advocate changes in policies, attitudes and social behaviour or customs that negatively affect them. The book briefly explores these complicated ideas, focussing on how communication processes can be harnessed. It then describes how different technologies, from the internet, video and radio, to traditional media, can be used. It is illustrated with brief case studies throughout

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