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‘Power-Hurt’: The Pains of Kindness Among Disabled Karen Refugees in Thailand

COLE, Tomas
2019

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In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.

Resources for business owners with disabilities

GRAVER, Sarah
February 2019

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A USA based blog providing a guide for entrepreneurs and business owners with disabilities. It includes information on business plans, marketing strategies, funding, training and networking. The US PASS (Plan to Achieve Self-Support) program and the requirements for it are outlined. There is a list of resources for people living with specific disabilities who are interested in self-employment including people with visual, hearing, developmental and mobility disabilities.

Disability and nutrition programming: evidence and learning (Disability Inclusion Helpdesk Report No. 6)

HOLDEN, Jenny
CORBY, Nick
February 2019

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This document provides a rapid review of the evidence on approaches to ensuring people with disabilities are reached through nutrition programming, focusing on children, adolescents, and women of reproductive age in low and middle-income countries (LMICs). The purpose of this review is to support DFID advisers and partners designing and implementing programmes with nutrition components to ensure they are more inclusive of people with disabilities. After outlining the methodology in Section 2, Section 3 includes an overview of available evidence on what works to ensure nutrition programming reaches people with disabilities, as well as an assessment of the strength of the evidence, and highlighting key research gaps. Section 4 provides a summary on factors affecting access for people with disabilities, and Section 5 concludes by drawing a series of considerations for policy and programming to ensure that people with disabilities are not left behind when it comes to government-led and development partner-led programmes to tackle malnutrition. Case studies of approaches are included in annex 1 to give further insights on promising practices and key learnings

The Effect of Age, Gender and Socioeconomic Status on Self-esteem, Body Image and Quality of Life of Amputees: An Evaluation Seven Years after the 2008 Sichuan Earthquake

LAM, Tin-Wai J
TANG, Long-Ching L
CHAU, WW
LAW, SW
CHAN, KM
2019

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Purpose: Psychological well-being is a growing concern in society. It is starting to play a pivotal role in the treatment and care of clients. This study aimed to evaluate the effect of age, sex and socioeconomic status on the self-esteem, body image and quality of life of the 2008 Sichuan earthquake amputees. Many of them are at a significant stage in their lives, especially those who are making the transition from childhood and adolescence into adulthood.

 

Methods: This cross-sectional study was conducted in October 2015. Forty-five participants were recruited from clinic sessions in Sichuan. The main outcome measures were Rosenberg Self-Esteem Scale (RSE), Chinese Amputee Body Image Scale (CABIS), and WHO Quality of Life-Bref Instrument (WHO-QOL-Bref). Results were analysed using Student’s T-test and Chi-square test where appropriate, and ANOVA for multi-group comparisons.

 

Results: Participants under 18 years of age scored higher in RSE (p=0.05), and lower in CABIS (p<0.005). They also scored higher in various QOL domains (D3: p<0.08, D4: p=0.06) and WHOQOL-Bref question 2 (p=0.06). Participants of different SES did not show any significant differences in the outcome measures. Female subjects scored higher in WHOQOL-Bref Question 1 (p=0.03).

 

Conclusion and Implication: Younger amputees have less body image distortion, higher quality of life and self-esteem compared to older amputees. Female amputees also appear to have a higher quality of life compared to male amputees. Socioeconomic status does not affect rehabilitation outcome and psychological well-being of amputees. However, the main factors affecting psychological well-being appear to be predominantly age and, possibly, gender.

Development, reliability, and piloting of a wheelchair caster failure inspection tool (C-FIT)

MHATRE, Anand A
LACHELL, Stephanie
PEARLMAN, Jonathan L
2019

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Introduction: 

Wheelchair casters fail frequently in the field causing multiple user consequences and wheelchair breakdowns. To inform caster design improvement, there exists no validated tools that can collect caster failures. This need motivated the development of a user-reported, caster failure inspection tool (C-FIT).

 

Methods: 

To develop C-FIT, a multistep design and testing approach was used which included face validity testing, test-retest reliability testing and expert review. Reliability testing was conducted with two independent cohorts of wheelchair professionals who inspected caster failures physically and online through pictures. The tool was revised based on testing outcomes and expert feedback. For preliminary data collection and evaluating usability, C-FIT was piloted at wheelchair service centers in Scotland, Indonesia and Mexico.

 

Results: 

Caster failure items reported in the literature were screened to develop the initial list of C-FIT items. Face validity testing conducted through surveys with wheelchair experts (n = 6) provided 14 items for C-FIT inclusion. The test-retest reliability was found to be high for 10 items with physical failure inspections (n = 12). For each of these items, 75% or more participants had substantial to almost perfect agreement scores (κ = 0.6–1.0). Lower reliability scores were found with online failure inspections (n = 11). C-FIT received positive usability feedback from study participants and data collectors in the field. Pilot field data (n = 31) included comprehensive details about failures useful for manufacturers, designers and researchers to improve caster designs.

Conclusions: 

The C-FIT tool developed in this study has substantial reliability and can be used for documenting caster failures at wheelchair service centers.

Individualised funding interventions to improve health and social care outcomes for people with a disability: a mixed-methods systematic review. Campbell Systematic Reviews 2019:3

FLEMING, Padraig
et al
January 2019

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This Campbell systematic review examines the effects of individualised funding on a range of health and social care outcomes. It also presents evidence on the experiences of people with a disability, their paid and unpaid supports and implementation successes and challenges from the perspective of both funding and support organisations.

 

This study is a review of 73 studies of individualised funding for people with disabilities. These include four quantitative studies, 66 qualitative and three based on a mixed-methods design. The data refer to a 24-year period from 1992 to 2016, with data for 14,000 people. Studies were carried out in Europe, the US, Canada and Australia.

 

DOI 10.4073/csr.2019.3

WHO consolidated guideline on self-care interventions for health: sexual and reproductive health and rights

WORLD HEALTH ORGANISATION (WHO)
2019

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SELF-CARE is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a health-care provider. 

The purpose of this guidance is to develop a peoplecentred, evidence-based normative guideline that will support individuals, communities and countries with quality health services and self-care interventions, based on PHC (Primary Health Care) strategies, comprehensive essential service packages and people-centredness. The specific objectives of this guideline are to provide:

• evidence-based recommendations on key public health self-care interventions, including for advancing sexual and reproductive health and rights (SRHR), with a focus on vulnerable populations and settings with limited capacity and resources in the health system

• good practice statements on key programmatic, operational and service-delivery issues that need to be addressed to promote and increase safe and equitable access, uptake and use of self-care interventions, including for advancing SRHR.

Working with persons with disabilities in forced displacement

UN HIGH COMMISSIONER FOR REFUGEES (UNHCR)
2019

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This note has been updated from its 2011 release and provides UNHCR and partners with specific guidance on meeting the protection needs of a diversity of persons with disabilities. While the document refers mainly to refugees, it applies to all of UNHCR’s persons of concern, including refugees, asylum seekers, internally displaced persons, returnees, and stateless persons.

This note provides guidance on: who persons with disabilities are; key principles (rights based approach, inclusion, participation and non-discrimination) and cross-cutting actions. 

Deaf people in Pacific Island countries. A design for the Pacific deaf strenthening program

JENKIN, Elena
WATERS, Philip
SEN, Krishneer
ADAM, Robert
2019

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Pacific Disability Forum (PDF) is committed to advancing the rights of people with disabilities living in Pacific Island Countries (PICs). Developing an evidence base to understand more about deaf children and adults’ experiences and priorities will better assist communities, DPOs, organisations and governments to plan inclusive communities, policy and programs.

 

The development of the design was deliberately planned to be highly collaborative and the team met with 161 people who shared their views. This provided opportunities for deaf people and DPOs to contribute to the design, along with representatives from government, non-government and regional organisations. This collaboration occurred in three countries in the Pacific, namely Solomon Islands, Samoa and Fiji. Within Fiji, the design team met with deaf and DPO representatives of other PIC’s along with regional multi-lateral organisations such as UNICEF and the Pacific Island Forum Secretariat (PIFS). Consultations also occurred remotely with supporting organisations and development workers that are focused on disability inclusion in the Pacific. The design undertook a desk review to learn what is known about deaf children and adults in the Pacific region. Participatory methods ensured the process was highly respectful of the views of deaf people. DPOs, other organisations and governments will be asked to identify to what extent deaf children, adults and their families are participating in services, programs and establishments, and to identify potential supports required to increase deaf people’s participation.  A capacity building element has been carefully built into the design. The report is divided into three parts. Part A rationalizes the design, with background information and a brief desk review to collect evidence from and about deaf children and adults in the Pacific. Part B describes the design development process and reports findings. Part C details the design for the situation analysis.  

Realising children's right to social protection in Middle East and North Africa. A compendium of UNICEF's contribution's

ARCHIBALD, Edward
January 2019

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This Compendium documents the broad range of UNICEF’s social protection interventions in MENA from 2014-2017. 
 

The Compendium includes 20 case studies detailing UNICEF’s contributions in the MENA region across the following five Action Areas

 

  • Evidence and Advocacy (Algeria, Egypt, Iraq, Iran, Lebanon, Yemen, Morocco)
  • Policies, coordinating and financing (Djibouti, Morocco)
  • Cash transfer programming and systems strengthening (Egypt, Jordan, Tunisia)
  • Cash plus interventions and social work (Iraq, State of Palestine (highlights children with disabilities), Yemen)
  • Social protection in fragile and humanitarian contexts/settings (Yemen, Lebanon, Jordan, Syria). The Syrian programme was "Reaching children with complex disabilities through cash transfers and case management"

 

 

 

Paediatric blast injury field manual

THE PAEDIATRIC BLAST INJURY PARTNERSHIP
2019

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The Field Manual has been created to provide technical guidance for those with medical training.  It enables the user to adapt their knowledge to the treatment of severely injured children.  It has paediatric-specific sections on:

  • Pre-hospital care and transport
  • Damage control resuscitation, surgery and intensive care
  • Surgery (thoraco-abdominal, limb, burns)
  • Neurological injury
  • Ward care
  • Rehabilitation
  • Psychosocial support
  • Ethics and safeguarding

The Manual is also intended for use by anyone who is required to plan for the treatment of severely injured children, so they can see the resources, training and equipment that is required in a medical facility likely to receive blast injured children.

The inclusion of persons with disabilities in EU-funded humanitarian aid operations.DG ECHO Operational Guidance

EUROPEAN COMMISSION
January 2019

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This guidance has been developed as a tool to reach the goal that all EU-funded humanitarian partners be required to take the needs of persons with disabilities into account in their projects.


It concentrates on mainstreaming the needs of persons with disabilities across all types of humanitarian interventions, hence not dealing with targeted actions specifically. As such, this guidance is a complementary tool to existing Thematic Policies, in particular to Thematic Policy n°8 on Humanitarian Protection

 

The guidance consists of three main parts. Part II presents disability mainstreaming in programming in detail and provides a series of concrete examples and illustrations. It also provides tools to collect data and measure disability inclusion. Part III of the guidance is a short document that that can be easily used in the field for either programming or monitoring.

The GRID Network: A Community of Practice for Disability Inclusive Development

COCKBURN, Lynn
MBIBEH, Louis
AWA, Jacques Chirac
2019

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Purpose: This paper aimed to provide an overview of the evaluation of the GRID Network (Groups for Rehabilitation and Inclusive Development) and the impact it had on its members.

Method:  Information was collected through a compilation of the resources developed during the project, and a summative evaluation process was employed at the end of the project. The paper is a short report on the summative evaluation.

Results: GRID Network members reported that the network was effective and beneficial. They developed new information and knowledge that was relevant to their local contexts; shared knowledge from local, national, and international sources; and, increased their skill in using social media for professional purposes. Recommendations include continuing with this kind of community of practice, with greater opportunities for more engagement and training; inclusion of more partner organisations; large group workshops and conferences; increased attention to advocacy for policy change; and, for more research to be carried out locally.

Conclusion and Implications: This project demonstrated that it is possible to develop and maintain a community of practice in a low-resource context on a minimal budget, even during times of political crisis. Further programme development, evaluation, and research are warranted to ascertain how this model can be scaled up to include a broader group of rehabilitation and other practitioners involved in disability inclusive development.

 

Disability, CBR & Inclusive Development, [S.l.], v. 30, n. 2, p. 84-94,  (2019)

MAANASI - A sustained, innovative, integrated mental healthcare model in South India

JAYARAM, Geetha
GOUD, Ramakrishna
CHANDRAN, Souhas
PRADEEP, Johnson
2019

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Studies in low and middle-income countries (LMICs) point to a significant association of common mental disorders with female gender, low education, and poverty. Depression and anxiety are frequently complicated by lack of disease awareness and non-adherence, the absence of care and provider resources, low value given to mental health by policy-makers, stigma, and discrimination towards the mentally ill. This paper aims to show that female village leaders/ community health and outreach workers (CHWs) can be used to overcome the lack of psychiatric resources for treatment of common mental disorders in rural areas.

A multidisciplinary team was set up to evaluate and treat potential clients in the villages. A program of care delivery was planned, developed and implemented by: (a) targeting indigent women in the region; (b) integrating mental health care with primary care; (c) making care affordable and accessible by training local women as CHWs with ongoing continued supervision; and (d) sustaining the program long-term.   Indigenous CHWs served as a link between the centre and the community. They received hands-on training, ongoing supervision, and an abridged but focused training module to identify common mental disorders, help treatment compliance, networking, illness literacy and community support by outreach workers. They used assessment tools translated into the local language, and conducted focus groups and client training programs. 

As a result, mental healthcare was provided to clients from as many as 150 villages in South India. Currently the services are utilized on a regular basis by about 50 villages around the central project site. The current active caseload of registered clients is 1930.  Empowerment of treated clients is the final outcome, assisting them in self-employment. 

Rural mental healthcare must be culturally congruent, and must integrate primary care and local CHWs for success. Training, supervision, ongoing teaching of CHWs, on-site resident medical officers, research and outreach are essential to continued success over two decades.

 

Disability, CBR & Inclusive Development, [S.l.], v. 30, n. 2, p. 104-113, Oct. 2019

 

 

Right to education handbook

RIGHT TO EDUCATION INITIATIVE (RTE)
UNESCO
January 2019

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This handbook was developed to guide action on ensuring full compliance with the right to education. The aim of this handbook is to facilitate the realisation and universal enjoyment of the right to education. Its objective is not to present the right to education as an abstract, conceptual, or purely legal concept, but rather to be action-oriented. Where possible, practical guidance is given on how to implement and monitor the right to education along with recommendations to overcome persistent barriers. 

 

The section on special protection of the right of education of marginalised groups contains content concerning people with disabilities. Access to education is also covered.

Decolonizing schools: Women organizing, disability advocacy, and land in Sāmoa

ANESI, Julianne
2019

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In the 1970s and 1980s, Sāmoan women organizers established Aoga Fiamalamalama and Loto Taumafai, two educational institutions, in the independent state of Sāmoa. This article examines these schools’ support of students labelled as ma’i (sick), specifically those with intellectual and physical disabilities. Through oral histories and archival research, I show the vital role performed by the women organizers in changing the educational system by drawing attention to the exclusion of disabled students. I focus on the collective labor of Sāmoan women and their influence in decolonizing schools. In this regard, the women organizers used Sāmoan concepts of fa’a Sāmoa (culture), fanua (land), and tautua (service) as ways to redefine the commitment of the education system. This is a story about daring to reimagine indigenous disabled bodies and their futures through knowledge systems, theory, and literature.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 1

Disability, Decoloniality, and Other-than-Humanist Ethics in Anzaldúan Thought

BOST, Suzanne
2019

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Gloria Anzaldúa’s writing has been read as decolonial based on her resistance to dominant national, racial, and cultural formations. This essay turns to unpublished documents from the Gloria Anzaldúa archive that are decolonial at a more fundamental level. In autobiographical writings about her own experiences with disability, as well as doodles and figure drawings, the alternate forms of human life that Anzaldúa depicts defy the logics of identification and differentiation that underlie colonial hierarchies. Refusing to fix bodies with labels, Anzaldúa accepted mystical encounters and inter-species minglings without judgment. She experienced her own disabling conditions (including a severe hormone imbalance and Type 1 diabetes) in the epistemological fold between medical diagnoses (which enforce the coloniality of power, knowledge, and being) and trans-corporeal perceptions that defy empirical analysis. I analyze the ways in which these more capacious ways of being resonate with recent developments in posthumanist theory and disability ethics.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 1

Precarious Bodies, Precarious Lives: Framing Disability in Alejandro González Iñárritu’s Cinema

GARRETT, Victoria
2019

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Alejandro González Iñárritu is a salient example of contemporary Latin American directors who portray sick or disabled bodies as a visual and affective shorthand for different forms of violence. This article explores the relationship between his signature intersecting plots that join seemingly disconnected social spheres in a shared precariousness and his portrayal of illness, injury, and disability to suggest the violence and inequality that underpin these connections. I argue that González Iñárritu’s films frequently represent injured and disabled bodies to expose invisible connections that make social injustice possible as evidence of his using film as a political or ethical intervention that might erode the way contemporary global capitalism reproduces coloniality in everyday life. At the same time, his films illustrate the pitfalls of utilizing disabled bodies to realize this critique, thus shedding light on the ethical dimensions of this tendency to link disability with a critique of violence.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 1

Persons with profound intellectual disability and their right to sex

VEHMAS, Simo
2019

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This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.

Mental health among Sami people with intellectual disabilities

GJERTSEN, Hege
2019

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The first living condition-survey among people with intellectual disability in Sami areas in Norway was conducted in 2017. The purpose of this article is to present and discuss results from the living-condition study, with a focus on the results related to mental health and bullying as a risk factor for poor mental health among people with intellectual disability and a Sami background. We have conducted a questionnaire survey among people with intellectual disability in Sami areas, with and without a Sami background (N = 93). People with intellectual disability have poorer mental health compared to the population in general and those with Sami background have the poorest mental health. Bullying is one of several factors that increase the risk of poor mental health among people with intellectual disability and Sami background. Having a Sami background makes people with intellectual disability more disposed to poor mental health.

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