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Towards a ‘mind map’ for evaluative thinking in Community Based Rehabilitation: reflections and learning

WEBER, Joerg
GRECH, Shaun
POLACK, Sarah
2016

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Calls for evaluations in Community Based Rehabilitation (CBR), in particular those of a participatory nature have stepped up in recent years. Much of this shifting discourse has emerged in response to the fact that evaluations overall remain scarce. Furthermore, very little is known about the impacts of CBR in practice and if/how it benefits persons with disabilities and their families on the ground. Nevertheless, and despite the calls for participatory approaches, the few existing efforts are too often targeted at creating standardised evaluations frequently at the expense of voice, participation and flexibility. This paper reports on a series of critical workshops held in Jamaica with CBR workers and other stakeholders, the objectives of which included discussions and reflections on emerging issues in localised, locally driven and responsive participatory evaluation frameworks. The findings highlight how participants favoured a flexible, adaptive and iterative approach that was not rigid, structured or per-determined by outsiders. Instead, they favoured an approach that created a safe space for sharing and learning, prioritised their narratives, and that was directly linked to and that fed directly into action on the ground. The paper concludes with the call for critical, engaged and bottom-up approaches that move away from control-oriented approaches in CBR towards more experimental and adaptive problem and process-oriented approaches, that embrace complexity and that are consistently responsive to an ever changing context.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

Research principles and research experiences: critical reflection on conducting a PhD dissertation on global health and disability

CLEAVER, Shaun
MAGALHAES, Lilian
BOND, Virginia
POLATAJKO, Helene
NIXON, Stephanie
2016

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This article is a presentation of insights gained through critical reflection on the experience of doctoral dissertation research on disability in Western Zambia. The framework guiding this critical reflection is the Principles for Global Health Research released by the Canadian Coalition for Global Health Research (CCGHR) in 2015. These six interrelated principles were developed in order to inform and foster research that better and more explicitly addresses health inequities. The principles are: humility, responsiveness to the causes of inequities, commitment to the future, inclusion, authentic partnering, and shared benefits. Critical reflection on the dissertation fieldwork raises the challenges of fulfilling each of the principles. Additionally, the structural power from a researcher in a position of relative privilege, as well as institutional power through the doctoral researcher’s academic program, was apparent. The exercise of power enabled certain possibilities for action by the researcher and the participants with disabilities while constraining others. The insights generated inform the next steps for this project in Western Zambia and considerations for current and prospective doctoral student researchers.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

Tangible First Steps: Inclusion Committees as a Strategy to Create Inclusive Schools in Western Kenya

DAMIANI, Michelle L
ELDER, Brent C
OKONGO, Theophilus O
2016

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This paper provides one example of forming an inclusion committee in Kenya toward the vision of creating inclusive primary school campuses. We suggest the development of inclusion committees as a potential innovative strategy and a critical element of community reform toward disability awareness, and to increase access to primary school education for students with disabilities. The formation of the inclusion committee followed a member-driven process for identifying barriers to educational access for students with disabilities, prioritizing the needs within their local context, determining a plan of action to address these needs within existing community resources, and gaining access to new resources. Recognizing access to equitable education as a universal human right supported by local and international legislation, this paper works within the tensions that exist between Western constructs of education and how they are applied in post-colonial countries in the global South. Our findings suggest that establishing diverse participation among stakeholders led to even more inclusive representation; that inclusion committee actions led to local and national level involvement with the initiative; and that community-driven progress toward inclusive education presented both strengths and challenges in terms of sustainability. Finally, we discuss implications for under-resourced schools, including those in the global North.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 1

Using participatory and creative methods to facilitate emancipatory research with people facing multiple disadvantage: a role for health and care professionals

KRAMER-ROY, Debbie
2015

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Participatory and creative research methods are a powerful tool for enabling active engagement in the research process of marginalised people. It can be par- ticularly hard for people living with multiple disadvantage, such as disabled peo- ple from ethnic minority backgrounds, to access research projects that are relevant to their lived experience. This article argues that creative and participa- tory methods facilitate the co-researchers’ engagement in the research process, which thus becomes more empowering. Exploring the congruence of these meth- ods with their professional ethos, health and care professionals can use their skills to develop them further. Both theory and practice examples are presented.

"I see that it is possible": Building capacity for disability inclusion in gender-based violence programming in humanitarian settings

Women's Refugee Commission
International Rescue Committee
May 2015

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While humanitarian organizations are increasingly recognizing women and girls with disabilities in policies and guidelines, there are still significant gaps in operationalizing this. Their needs and capacities are often under-represented in gender, protection and disability forums. Furthermore, organizations of women with disabilities, which can play a critical role in bridging the development/humanitarian divide, are not meaningfully included in humanitarian coordination and decision-making.

This report documents findings and recommendations from a participatory action research project on disability inclusion in GBV programming in humanitarian settings, conducted with communities affected by crisis and conflict.

This toolkit was created with the input and participation of persons with disabilities, as well as GBV practitioners,
over the course of the project. It is intended to support GBV staff to build disability inclusion into their work, and
to strengthen the capacity of GBV practitioners to use a survivor-centered approach when providing services to
survivors with disabilities. The tools are designed to complement existing guidelines, protocols and tools for GBV
prevention and response, and should not be used in isolation from these. GBV practitioners are encouraged to
adapt the tools to their individual programs and contexts, and to integrate pieces into standard GBV tools and
resources.

Mainstreaming persons with disabilities into disaster risk reduction

VERMA, Colonel N. M.
KADAM, Smita
March 2015

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This case study presents Saritsa Foundations work in India. Saritsa Foundation has been organizing capacity building workshops for persons living with disabilities since June 2000, in rural and urban areas in nine states of India. About 10,050 persons living with disabilities have been given opportunities to develop skills to respond to disasters and protect themselves

The World Conference on Disaster Risk Reduction (WCDRR), HFA Case Study
 

‘Disabled asylum seekers?… They don’t really exist’: The marginalisation of disabled asylum seekers in the UK and why it matters

YEO, Rebecca
2015

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This paper is based on a study conducted with disabled people seeking asylum in the UK, using art as a means to bring out and promote people’s key messages in public spaces. The findings suggest that people with these intersecting identities lack sufficient numbers, resources or allies to assert their needs and rights in statutory, nonstatutory or even peer support organisations in the UK. This results in such deprivation and isolation, that their very existence is often obscured. The paper argues that not only does such marginalisation cause unnecessary suffering among those directly affected, but also negatively impacts on the whole population. A hierarchy of entitlement may impede recognition of the causes and commonalities of oppression and therefore also hinder solidarity. Where reduced standards become acceptable for certain people, the imposition of similar standards on others is facilitated, particularly in the context of neo-liberal austerity. Many of the recent restrictions imposed on disabled citizens and other benefit recipients have been used on disabled asylum seekers for more than a decade. If, as Barbara Young Welke suggests (2010:156) the problem is systemic, then inclusion cannot be the solution. This paper concludes that systemic change is needed to end the differential ranking of people’s worth and to build greater solidarity.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 1

Typhoon Haiyan one year on: Disability, poverty and participation in the Philippines

COBLEY, David
2015

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This article explores the relationship between disability, poverty and participation in the aftermath of Super Typhoon Haiyan, which struck the Philippines on 8th November 2013, based on field research conducted at the time of Haiyan’s first anniversary. Fieldwork included interviews exploring disabled people’s experiences, their priorities and the challenges facing them in the year since Haiyan. The analysis, which draws on a three-level typology of participation and Sen’s (1999) capability perspective, concludes that disabled people have the potential to participate as active agents in disaster planning and recovery processes, both individually and collectively, at various levels. Furthermore, supporting disabled people to participate effectively, through flexible approaches, capacity building and the forging of pro-poor alliances, can reduce poverty in capability terms, as well as raising awareness of the largely untapped potential of disabled people to contribute to the shaping of more inclusive societies.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 3

Working within the tensions of disability and education in post-colonial Kenya: Toward a praxis of critical disability studies

ELDER, Brent C
FOLEY, Alan
2015

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This paper explores emerging and evolving critical approaches to inclusive education development work in the postcolonial, global South context of Kenya. Taking an ontoformative (Connell, 2011) perspective of disability, we view disability as a dynamic process inherently tied to social contexts and their fluid effects on disabled bodies. Thus, not all impairments are a natural form of human diversity, and many are imposed on bodies in underdeveloped countries through oppressive imported Western practices. In this paper we present our work not as models of ‘what to do’ or ‘what not to do’ in development work. Rather we offer a reflection on the evolution of our understanding and approach to this work from being merely ‘progressive’ (while further exporting Northern theory), toward a more critical and self-reflexive approach. We hope this is a starting point in a dialogical process of mutual knowledge production between the global North and South that leads to better ways of conceptualizing and supporting people with disabilities in the global South.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 3

How disability studies and ecofeminist approaches shape research: exploring small-scale farmer perceptions of banana cultivation in the Lake Victoria region, Uganda

LEADBEATER, Bridget
2015

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This paper explores the complex intersections of race, gender and disability, whilst offering a critical reflection on how disability studies discourse and ecofeminist approaches together elucidate a subjectivity that is unique, distinct and influential in generating participatory action research knowledge. Reflection and insights are based on empirical work with small-scale farmers (mainly women) in the central region of Uganda carried out for a PhD study. The study aimed to illuminate the broad and complex livelihood experiences of domestic banana (staple crop) cultivators and their perceptions of bio-technological intervention in the form of banana tissue culture (TC) and the associated processes. Subjectivity between the researcher and respondents is a two-way process. As a researcher who is disabled woman using a wheelchair, working in the field required much adaptation physically and mentally. Equally, my disability shaped respondents’ perceptions of me as a person, a researcher as well as their responses. In fact, arguably, my disability facilitated unusual circumstances and opened up doors to sensitive questions, personal accounts and a mutual rapport between the farmers and myself. The influence of the disabled research subject fostered exceptional conditions to propagate inclusive investigative methods to represent ‘the lived experience’ of the farmer in a procedure not often applied in agricultural research.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 3

Through our eyes

HANDICAP INTERNATIONAL
November 2014

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This video was made with children from Rwanda, Burundi and Kenya in 2014, in the context of a child participation activity within the “Ubuntu Care project: confronting sexual violence against children with disabilities in Rwanda, Burundi and Kenya”, implemented by the NGO Handicap International and its partners. The initiative brought disabled children together to start discussing their experiences and the cameras became an outlet for the children and members of the community to share their stories and raise awareness about important issues about confronting sexual violence against children with disabilities

Note: dialogue is in French with an option for English subtitles

The Malawi key informant child disability project

TATARYN, Myroslava
et al
August 2014

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“The aim of this study was to use the KIM to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. The Key Informant Method (KIM) is a novel method for generating these data. KIM focuses on training community volunteers to identify local children who may have disabilities, who are then screened by medical professionals and referred on for appropriate health and rehabilitation interventions. Consequently, the method offers an alternative to population-based surveys of disability in children, which can be costly and time consuming”

The Malawi key informant child disability project : summary report

TATARYN, Myroslava
et al
August 2014

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This report provides a summary of research project conducted by the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine and the University of Malawi. The study used the Key Informant Method (KIM) to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. This report presents summary of the study’s background information, aims and objectives, key findings, conclusions and recommendations

Social participation of diabetes and ex-leprosy patients in the Netherlands and patient preference for combined self-care groups

DE VRIES, Henry JC
DE GROOT, Roos
VAN BRAKEL, Wim H
August 2014

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This study compared the social constraints of diabetic patients and ex-leprosy patients and investigated combined self-care groups for ex-leprosy patients and diabetic patients. The physical complications and social problems in ex-leprosy and diabetic patients with neuropathy are similar. Despite the fact that diabetic patients preferred disease-specific, homogeneous self-care groups, the authors believe that the option of combined groups is a promising strategy. Therefore, further research is warranted into the acceptance and impact of self-care groups as a strategy to reduce social constraints by diseases causing neuropathy 

Frontiers in Medicine, Vol 1

Challenging perceptions of disability through performance poetry methods: the ‘Seen but Seldom Heard’ project

HODGES, Caroline E M
FENGE, Lee-Ann
CUTTS, Wendy
2014

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This paper considers performance poetry as a method to explore lived experiences of disability. We discuss how poetic inquiry used within a participatory arts-based research framework can enable young people to collectively question society’s attitudes and actions towards disability. Poetry will be considered as a means to develop a more accessible and effective arena in which young people with direct experience of disability can be empowered to develop new skills that enable them to tell their own stories. Discussion of how this can challenge audiences to critically reflect upon their own perceptions of disability will also be developed.

Integrating people’s capacities in disaster risk reduction through participatory mapping

CADAG, Jake Rom D
GAILLARD, JC
November 2013

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This is ebook chapter presents different forms of participatory mapping to facilitate the integration of people’s capacities within disaster risk reduction.   The chapter "presents a particular form of participatory mapping...Participatory 3 Dimensional Mapping (P3DM), as a tool for making people’s capacity, as well as vulnerabilities, tangible, so that these can be considered in DRR [disaster risk reduction].  It draws upon a project led by coastal communities in the Philippines, between 2008 and 2009"

Chapter 17 of LÓPEZ-CARRESI, Alejandro, et. al, Eds, (2013) "Disaster management : International lessons in risk reduction, response and recovery” 

Knowledge and use of contraceptive methods amongst deaf people in Ghana

MPRAH, Wisdom K
2013

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Background: Persons with disabilities in general face serious barriers to sexual and reproductive health (SRH) information and services due to institutional and attitudinal barriers. However, because deaf people have unique communication and linguistic needs, which are often misunderstood or ignored, they face greater barriers than other persons with disabilities. Whilst available data indicated that there is a wide gap between knowledge and usage of contraceptive amongst Ghanaians, little is known about the level of contraceptive knowledge and usage amongst deaf people.

 

Objectives: The objective of the study was to investigate the level of knowledge and use of contraceptive methods amongst deaf people in Ghana with the aim of understanding their contraceptive behaviour and to improve access.

 

Method: The study was a participatory SRH needs assessment utilising a two-phase, sequential, mixed methods design. The study included 179 participants, consisting of focus groups with seven executives of Ghana National Association of the Deaf (GNAD), 10 male deaf adults, and 9 deaf female adults. A total of 152 deaf people, made up of students, women, and men participated in a survey, whilst one hearing person served as a key informant.

 

Results: The findings of the study indicated that of the 13 methods shown in the survey, only three were known to about 70% of the adults and 60% of the students. Level of knowledge of the remaining nine methods was low.

 

Conclusion: Clear and effective policies are needed to guide the provision of SRH information and services for deaf people in Ghana.

Exploring Knowledge and Attitudes towards HIV/AIDS among Deaf People in Ghana

MPRAH, W K
2013

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Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.

 

Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.

 

Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.

 

Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.

Take us seriously! Engaging children with disabilities in decisions affecting their lives

LANSDOWNE, Gerison
et al
June 2013

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UNICEF’s work on disability is based on a human rights approach, with a focus on equity. It has been developed within the framework of inclusive development, and actively promotes the social model of disability. A central tenet is that legislation, policies and programmes must be informed and shaped by the children they will affect. Participation is a foundational principle of a rights-based approach. These guidelines are meant to strengthen the capacity of UNICEF and partners in creating opportunities for children with disabilities to exercise their right to be heard and taken seriously.

It is important to:

  • clearly identify obstacles impeding the participation of children with disabilities;
  • examine why participation is important for children with disabilities;
  • provide practical guidance on how and where to reach out and engage children with disabilities more effectively and systematically;
  • prioritize ways to measure the effectiveness of participatory initiatives with children with disabilities. 

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