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Exploring the links between poverty and disability in rural Bangladesh

DAVIS, Peter
May 2017

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This paper explores the links between poverty and disability drawing from 60 qualitative life-history interviews conducted in rural Bangladesh, in 48 households, in three districts, in March 2016. The paper provides insights into the relationship between poverty and disability with the aim of informing policy and practice concerned with both reducing poverty and improving the life chances of people with disabilities. All of the households had a person with a disability as a member, and in three households, two household members had a disability. Mechanisms by which poverty caused or exacerbated disabilities, and also how people with disabilities fell into poverty, were prevented from escaping poverty, and, in some cases, succeeded in escaping poverty are explored. 
 

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Extra costs of living with a disability: A review and agenda for research

MITRA, Sophie
PALMER, Michael
KIM, Hoolda
MONT, Daniel
GROCE, Nora
April 2017

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Background
There has been a growing interest in disability and poverty on the international research and policy stages. Poverty assessments for persons with disabilities may be affected by the experience of extra costs associated with a disability.

Objective
This article provides a systematized review of the global literature on the direct costs associated with living with a disability at the individual or household level.

Methods
We searched three databases for peer-reviewed journal articles that estimated extra costs associated with disability: Econlit, SocIndex and PubMed.

Results
We found 20 such studies conducted in 10 countries. These studies were predominantly from high-income countries. Although studies were heterogeneous (e.g., in terms of disability measures and cost methodologies), estimated costs were sizeable and some patterns were consistent across studies. Costs varied according to the severity of disability, life cycle and household composition. Highest costs were observed among persons with severe disabilities, and among persons with disabilities living alone or in small sized households.

Disability and Health Journal
Volume 10, Issue 4, October 2017, Pages 475-484
https://doi.org/10.1016/j.dhjo.2017.04.007

“When will I get to go home?” Abuses and discrimination against children in institutions and lack of access to quality inclusive education in Armenia

BUCHANAN, Jane
February 2017

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This report documents how thousands of children in Armenia live in orphanages, residential special schools for children with disabilities, and other institutions. The report is based on Human Rights Watch visits to five state-run orphanages and ten state-run schools, including six special schools and four mainstream schools, and interviews with 173 people, in eight cities in Armenia. They interviewed 47 children and young adults, and 63 families of children living in orphanages, attending special schools or attending mainstream schools. They also interviewed directors of orphanages, special schools, and mainstream schools, as well as social workers, doctors, teachers, psychologists, caregivers, and other staff in institutions

Topics include: overview of residential institutions in Armenia; institutionalization of children and young adults and discrimination in the deinstitutionalization process; problems for children and young adults in residential institutions; lives transformed; national and international legal obligations; failure to guarantee quality education to children with disabilities; other forms of education for children with disabilities; government and donors’ response; recommendations

Social inclusion, care and belonging of children with spina bifida: perspectives from Uganda

BANNINK, Femke
February 2017

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This study presents a situation analysis on daily functioning, caregiving, and inclusion of children with spina bifida in Uganda. 139 children with spina bifida and their families from 4 regions in Uganda participated in this study. Findings show how a complex play of cultural values, globalisation and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida


Afrika Focus, vol 30, no. 1, 2017,  pp. 130-136

DOI https://doi.org/10.21825/af.v30i1.4984

 

Evaluating the impact of a community–based parent training programme for children with cerebral palsy in Ghana

ZUURMOND, Maria
et al
January 2017

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"Cerebral palsy is the most common cause of physical disability in children worldwide, and yet in most low resource settings there are few services available to support children with cerebral palsy or their families. Research is required to understand the effectiveness of community and/or home based programmes to address this gap. This 2-year study aimed to evaluate a participatory caregiver training programme called ‘Getting to know cerebral palsy’ in Ghana. The training programme consisted of a monthly half-day support group with training, and a home visit, delivered across eight sites in Ghana over 10 months. A total of 76 families and children were included at baseline and 64 families followed up one year later at endline. Children were aged between 18months and 12 years with a mean of 3.8 years and a range of severity of cerebral palsy. Nearly all (97%) the caregivers were female and the father was absent in 51% of families. The study was a pre-post intervention design using mixed methods to evaluate the impact. A baseline and endline quantitative survey was conducted to assess caregiver quality of life (QoL) and knowledge about cerebral palsy and child feeding, health, and nutrition outcomes. Qualitative data was collected to explore the impact and experiences of the training programme in more depth".

Advances in Autism, vol.3, no.3, 2017 Special issue: Improving access to healthcare

2017

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Special issue: Improving access to healthcare. The aim of this special issue is to stimulate discussion and new research on the health and health care of people with autism spectrum disorder. In a co-productive approach, we give people on the autism spectrum, their families and health care providers a voice to open an exchange between professionals and people with lived experience. The guest editorial is freely accessible. There are six papers:

 

  • Autism and healthcare
  • Quality of health and health services in people with fragile X syndrome: perspective of their parents
  • Transition tools and access to adult primary care
  • Systemic-attachment formulation for families of children with autism
  • An online ASD learning module for pediatric health care professionals
  • Pain in Rett syndrome: peculiarities in pain processing and expression, liability to pain causing disorders and diseases, and specific aspects of pain assessment

Advancing the access of deafblind women and girls to sexual and reproductive health

VISUAL HEARING IMPAIRMENT MEMBERSHIP ASSOCIATION (VIHEMA)
2017

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Activities to promote the access of deafblind women and girls to sexual and reproductive health are reported via brief descriptions of what happened, what changed and what worked. Activites included: training the deafblind women in their rights;training relatives of deafblind women, giving advice on general care, as well as highlighting the importance of supporting their sexual and reproductive health choices and promoting family planning; tackling the issue of the forced sterilization; awareness raising via newspapers and radio and improving livelihoods.

 

 

Employment rights of persons with disabilities in India

RIOUX, Marcia
et al
2017

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This report presents an overview of individual experiences and systemic data concerning the right to work for persons with disabilities in India. The report is part of the AWARE Project conducted by DRPI in Hyderabad in Andhra Pradesh, India. A total of 78 people with various physical, sensory and intellectual disabilities participated in this study. The research team also consists of people with various disabilities. Individual experiences have been collected through individual interviews or focus groups discussions. Information was collected about the barriers and challenges to participate in the workforce. People with disabilities were asked by other people with disabilities to tell their own stories about when they have been left out, treated badly or prevented from participating in the workforce because of their disability. These stories give us information about the real human rights situation faced by persons with disabilities. Personal interviews were conducted in Hyderabad and Secundarabad cities in Andhra Pradesh, India. A total number of 78 people were interviewed. The data was collected, collated and interviews conducted by persons with disabilities

Emergency planning (for carers)

ENABLE SCOTLAND
January 2017

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Emergency planning is relevant to all carers, irrespective of the age of the carer, the age of the person they care for or the health needs or disability the cared-for person has.

The emergency planning toolkit will helps a carer create an emergency plan. Answering ‘Who, What Why, Where and When’, enables planning for any unforeseen circumstances.

Working through the toolkit, requires a carer to consider all eventualities and possible solutions. Relevant family, friends and professionals should be involved in this process.

Once a carer has worked through the toolkit they should have enough information to complete the emergency plan

Report of the Special Rapporteur on the rights of persons with disabilities (theme: access to rights-based support for persons with disabilities)

DEVANDAS, Catalina
December 2016

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In her report, the Special Rapporteur provides an overview of the activities undertaken in 2016, as well as a thematic study on access to support by persons with disabilities. The study includes guidance for States on how to ensure the provision of different forms of rights-based support and assistance for persons with disabilities, in consultation with them. In preparing the study, the Special Rapporteur convened a regional expert consultation in Addis Ababa in September 2016 and analysed the responses to a questionnaire sent to Member States, national human rights institutions, agencies of the United Nations system, civil society organisations and persons with disabilities and their representative organisations. As at 5 December 2016, she had received 114 responses. 

Global report: Self-Advocacy for inclusion

INCLUSION INTERNATIONAL
November 2016

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Across the Inclusion International network, many individuals and organisations took part in workshops, surveys and interviews to report:

  • what self-advocacy means to them
  • what good support is 
  • how organisations can be more inclusive
  • the vital role that families play in empowering self-advocacy.

This report provides a snapshot of work, and has some useful information for self-advocates, supporters, organisations and families. As well as containing the results from the global survey, interviews and workshops, this report also provides some useful guidance for anyone who wants to make the world more inclusive for people with intellectual disabilities.

 

A website (www.selfadvocacyportal.com) has been developed to share good practice and resources.

Supporting Parents in Caring for Children with Disability in Ghana

BESTEN, Joyce den
CORNIELJE, Marije Tebogo
CORNIELJE, Huib
BOTWEY, David Norden
2016

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Purpose: This study assesses the factors that influence the wellbeing of caregivers and their children with a disability, in a rural and an urban site in Ghana. The wellbeing of parents, not surprisingly, influences the wellbeing of their children. A better understanding of the role and challenges faced by parents in caring for their child with a disability will help to improve existing services and support for children with disability.

 

Methods: Twenty-five parents of children with different disabilities participated in a PhotoVoice study. Photographs taken by parents, to show the challenges they experienced in childcare, were explained and discussed during focus group discussions. The Cantril Ladder was used to discuss subjective wellbeing.

 

Results: The photographs and discussions with parents indicated that the extensive time spent on their child, the child’s poor health status, and lack of educational opportunities had a negative influence on the wellbeing of both parent and child. Parents struggle to earn an income to provide for a child with disability. This often causes them to sink into (even deeper) poverty, and further increases the challenge to provide the (specific) care that a child with disability needs.

 

Conclusions and Implications: If governments, non-governmental organisations and community-based organisations want to contribute to the wellbeing of children with disability, they should be aware of the immediate context of the child, namely the family, and of the specific needs of the parents. Since the wellbeing of parents can affect the wellbeing of the child, and a child with disability may often cause further poverty in the family, relieving parents from some of the demands of childcare could help them to generate income, to the ultimate benefit of the entire family. Organisations working for children with a disability should actively involve parents of these children in designing and implementing interventions.

Confessions of an inadequate researcher: space and supervision in research with learning disabled children

BENZON, Nadia von
2016

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Location is often at the fore of decision-making regarding fieldwork and choice of methods. However, little research has directly discussed the importance of the choice of site in the production of research data, particularly concerning the way that different relationships will manifest between researcher and participant in different spaces. Site may be particularly important in research with (learning disabled) children, as research location is intertwined with the level of caregiving required from the researcher, and the sorts of surveillance the research engagement may be subject to. This paper draws on research with learning disabled 6–16-year olds that took place in homes, schools and the outdoors, in a variety of microgeographical locations from bedrooms to nature reserves. This paper reflects on the challenges, including the very ‘worst’ research moments, occurring in the different research environments. Whilst the research was carried out with learning disabled children and young people, the discussion has implications for research with non-disabled children and ‘vulnerable’ participants more broadly.

Dignity in mental health : Psychology & mental health first aid for all

WORLD FEDERATION FOR MENTAL HEALTH (WFMH)
October 2016

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‘Dignity in Mental Health-Psychological & Mental Health First Aid for All’ is designed to enable us to contribute to the goal of taking mental health out of the shadows so that people in general feel more confident in tackling the stigma, isolation and discrimination that continues to plague people with mental health conditions, their families and carers. Key messages concerning Mental Health First Aid include: all members of the public can learn basic skills to help people with mental health problems; we need to aim to have large numbers of people trained throughout the world to be able to provide mental health first aid; parity is needed with the provision of physical first aid.

Disability, family and identity

SCHNEIDER, Cort
October 2016

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Many people with disabilities struggle with issues that relate to identity development.  Many people with disabilities find it difficult to develop a positive sense of self. There is also no question that familial relationships play a significant part in the process of identity construction for people with disabilities. Thus, it is important to examine how family relationships influence the process of identitydevelopment for people with disabilities. Conversely, it relevant to explore how a person’s identity development can impact his or her relationship with family members. This article employs an autoethnographic approach to research in order to examine issues that relate to disability, identity and family. It elucidates the complex nature of family scripts and identity. In addition this paper contends that the process that an individual goes through in order to “come to terms” with a disabled identity, can transform the relationships that an individual has with various family members.

 

Considering Disability, Vol.1, Issue 3&4

DOI: 10.17774/CDJ1.32016.2.20575874

Disability Studies Quarterly (DSQ) - Volume 36, Issue No. 4 (2016)

DISABILITY STUDY QUARTERLY
October 2016

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 Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities, disability rights advocates, creative writers, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the multidisciplinary field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society.

Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

ZUURMOND, Maria
NYAPERA, Velma
MWENDA, Victoria
KISIA, James
RONO, Hilary
PALMER, Jennifer
2016

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Background: Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention.


Methods: Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation.


Results: The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families.


Conclusion: The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.

Living with disabled children in Malawi: Challenges and rewards

BARLINDHAUG, Grete
UMAR, Eric
WAZAKILI, Margaret
EMAUS, Nina
2016

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Background: Rehabilitation personnel need to be sensitive to the cultural aspects that constitute the environment of a disabled child’s family life.

 

Objectives: The aim of this study was to gain insight on how families experience parenting of disabled children and how the families experience the support provided by the rehabilitation system in Malawi.

 

Method: An anthropological field study combining interviews and observations was conducted in a rural district of Malawi in 2011. Permission was granted to follow four families, and this study presents the stories of two families, whose children have severe disabilities. We used phenomenological and narrative analyses to make sense of the stories.

 

Results: The findings indicate that families with disabled children invest time and emphasise care for their disabled children. They feel enriched by their experience despite challenging situations with little support from the rehabilitation services. High standards of care demonstrating positive and moral attitudes have earned these families respect in their communities. Storytelling has created an opportunity for the families to understand and interpret their challenging situation with inherent contextual meaning.

 

Conclusion: This study shows that families with disabled children draw on cultural and structural strengths that rehabilitation professionals should be aware of in their support to mothers and other caregivers of children with disabilities.

An Opportunity for Charity? A Catholic Tradition in Understanding Disability and Its Impact on Ministry

MASTERS, Anne
2016

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David Perry, the father of a boy with Down Syndrome, wrote an angry reaction to Pope Francis’ references to individuals and families living with disabilities in Amoris Laetitia. Perry is con- cerned about the limited perspective of persons with disabilities that is portrayed in the texts, which show families commended for their love and tolerance, with a lack of appreciation for the person with a disability as a person of interest, rather than an object of pity. He offers further reflections of caution and hope in response to words and actions of Pope Francis during a Mass celebrating disability awareness. Perry’s comments provide the starting point for reflecting on the image of persons with disabilities presented in Amoris Laetitia and a discussion of possibilities for charity to serve as a corrective for this and pastoral practice.

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