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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 This essay turns to unpublished documents from the Gloria Anzaldúa archive that are decolonial at a more fundamental level.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

Disability & the Global South (DGS), 2018, Vol. 5 No. 1

2018

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Articles include:

  • Inclusive Education in the global South? A Colombian perspective: ‘When you look towards the past, you see children with disabilities, and if you look towards the future, what you see is diverse learners
  • Services for people with Communication Disabilities in Uganda: supporting a new Speech and Language Therapy profession
  • Frida Kahlo and Pendular Disability Identity: A Textual Examination of El Diario de Frida Kahlo
  • Health Information-Seeking Behaviour of Visually Impaired Persons in Ibadan Metropolis, Nigeria
  • Online Collective Identities for Autism: The Perspective of Brazilian Parents
  • Transnationalizing Disability Policy in Embedded Cultural-Cognitive Worldviews: the Case of Sub-Saharan Africa
  • Portrayal of Disabled People in the Kuwaiti Media

Services for people with communication disabilities in Uganda: supporting a new speech and language therapy professional

MARSHALL, Julie
WICKENDEN, Mary
2018

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Services for people with communication disability (PWCD), including speech and language therapists (SLTs), are scarce in countries of the global South. A SLT degree programme was established at Makerere University, Uganda, in 2008. In 2011, an innovative project was set up to provide in-service training and mentoring for graduates and staff of the programme. This paper describes the project and its evaluation over three years. Three types of input: direct training, face-to-face individual and group meetings, and remote mentoring, were provided to 26 participants and evaluated using written and verbal methods. The first two types of input were evaluated mainly positively, while remote mentoring received more mixed evaluations. Less positive evaluations were linked to factors including resourcing, cultural perceptions about professional roles and services, work patterns, power/status, engagement, perceptions of help-seeking, community recognition of the needs for services for PWCD. Findings suggest that participatory approaches, flexibility, reflexivity and open discussion with participants around support and work challenges, are important. Power gradients between white Northern ‘experts’ and relatively inexperienced East African SLTs, contributed to some challenges. Structural issues about degree programme structures and statutory bodies, provide lessons about the development of new services and professions in low-income settings. 

 

Disability and the Global South, 2018 Vol.5, No. 1

Online collective identities for autism: The perspective of Brazilian parents

ANTUNES, Debora
DHOEST, Alexander
2018

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The importance of online communities for parents of people with disabilities has been discussed by many scholars in the fields of Digital and Disability Studies, showing, for instance, the importance of social support and the formation of social ties. In order to contribute to this scholarship, this paper explores how collective identity models are built and circulated by parents of autistic people in one of the biggest Brazilian online communities about the subject, ‘Sou autista… conheça o meu mundo’ (I am autistic…get to know my world). The results were obtained through a digital ethnography, based on participant observation and an exchange of information with the members of the community studied. Based on the data collected, the study concludes that the collective identity models that circulate in this community can be grouped into legitimising, resistant, and project identities, as postulated by Castells (2010). The different views reflect how parents see autism and represent the ways it is treated in Brazilian society.

 

Disability and the Global South, 2018 Vol.5, No. 1

Portrayal of disabled people in the Kuwaiti media

ALENAIZI, Hussain Mohammed
2018

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This paper explores the views of 10 participants on how the Kuwaiti media represents disabled people. Participants expressed their views through focus groups and interviews. The findings show that, generally, disabled people in Kuwait are shown in a negative light in the media. The media depicts disabled people as ‘pitiable’, ‘violent’, ‘sinister’, ‘tragic’, and as a ‘tool of ridicule’. The findings, however, witness some positive examples of media representation regarding how some TV shows portray deaf people in a positive light. On the other hand, the study suggests that learning disabled people are the most negatively depicted group in Kuwaiti society. There are also indications of implicit endorsement or internalisation by the participants of views of disabled people as ‘extraordinary’ despite the presence of their impairments. The study concludes that it is more important that the media shows the everyday lives of disabled people before showing their abilities and achievements.

 

Disability and the Global South, 2018, Vol.5, No. 1

Disability & the Global South (DGS), 2017, Vol. 4 No. 1 - Special issue: Disability in the Sustainable Development Goals: Critical Reflections

2017

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Articles include:

  • Editorial: Disability and the SDGs: is the battle over?
  • Entering the SDG era: What do Fijians prioritise as indicators of disability-inclusive education?
  • SDGs, Inclusive Health and the path to Universal Health Coverage
  • No One Left Behind: A review of social protection and disability at the World Bank
  • The capacity of community-based participatory research in relation to disability and the SDGs
  • Measuring Disability and Inclusion in relation to the 2030 Agenda on Sustainable Development

No One Left Behind: A review of social protection and disability at the World Bank

KARR, Valerie L
VAN EDEMA, Ashley
SIMS, Jacob
BRUSEGAARD, Callie
2017

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The 2030 Agenda for Sustainable Development cites poverty eradication as both the ‘greatest global challenge’ and an ‘indispensable requirement’ for sustainable development (UN, 2015). Unfortunately, the path between discourse and practice is rarely clear. This is especially true for the estimated one billion people with disabilities around the globe who face barriers and challenges to inclusion in mainstream development efforts; and for whom disability-specific projects and interventions are far and few between. This paper responds to the lack of available data focused on tracking the inclusion of persons with disabilities in mainstream poverty reduction efforts. It reports on work by a multidisciplinary research team in developing and piloting a methodology measuring disability inclusive investments in the World Bank’s active portfolio. The paper focuses specifically on the World Bank’s social protection portfolio, aligned with SDG 1 (End Poverty), and outlines a methodology for analysing project-level documentation, using key word searches, and codes aligned with the Sustainable Development Goals to determine the inclusion of persons with disabilities. Findings indicate that only a small percentage, 5%, of the World Bank’s active social protection portfolio explicitly include persons with disabilities as target beneficiaries. It goes on to argue that this dearth in disability inclusive development efforts exposes a vital need to systematically include the needs of this population in the planning for, provision of, and assessment of development assistance efforts. The paper concludes with a set of recommendations for ensuring future projects are inclusive from program development and implementation through to assessment of outcomes.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

The capacity of community-based participatory research in relation to disability and the SDGs

GREENWOOD, Margo
2017

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The 2030 Agenda pledges to foster shared responsibility, recognizes all as crucial enablers of sustainable development, and calls for the mobilization of all available resources. It also commits to multi-stakeholder partnerships and pledges to be open, inclusive, participatory and transparent in its follow-up and review. Community-based participatory research (CBPR) equitably involves community members, organizational representatives and researchers, enabling them to share power and resources through drawing on the unique strengths that each partner brings. It aims to integrate any increased knowledge and understanding into action, policy and social change to improve the health and quality of life of community members. CBPR involves recruiting community or peer researchers, involving them in planning and offering them training to undertake interviews and observations in their context. They are also part of the analysis and dissemination process, and continue to work with local partners on advocacy plans and events after projects and research have finished. People with disabilities are actively part of the research process throughout. Drawing on relevant literature and current CBPR disability research in East and West Africa, this paper puts forward CBPR as a methodology that can enable community members to identify key barriers to achieving the SDGs, and inform how policy and programmes can be altered to best meet the needs of people with disabilities. It demonstrates CBPR in practice and discusses the successes and complexities of implementing this approach in relation to the SDGs. The paper also highlights findings such as the high level of support needed for community research teams as they collect data and formally disseminate it, the honest raw data from peer to peer interaction, a deep level of local ownership at advocacy level, emerging issues surrounding meaningfully involving community researchers in analysis, and power differentials. A key conclusion is that to join partners with diverse expertise requires much planning, diplomacy, and critical, reflexive thought, while emphasising the necessity of generating local ownership of findings and the translation of knowledge into a catalyst for disability-related policy change.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

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

‘Ask us what we need’: Operationalizing Guidance on Disability Inclusion in Refugee and Displaced Persons Programs

PEARCE, Emma
2015

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Persons with disabilities remain one of the most vulnerable and socially excluded groups in any displaced community. Barriers to accessing humanitarian assistance programs increase their protection risks, including risk of violence, abuse and exploitation. Women’s Refugee Commission has been supporting the United Nations High Commissioner for Refugees and implementing partners to translate guidance on disability inclusion into practice at field levels through the provision of technical support to eight country operations. In the course of the project, WRC has consulted with over 600 persons with disabilities and care-givers and over 130 humanitarian actors in displacement contexts. Key protection concerns identified include a lack of participation in community decision making; stigma and discrimination of children and young persons with disabilities by their non-disabled peers; violence against persons with disabilities, including gender-based violence; lack of access to disabilityspecific health care; and unmet basic needs among families of persons with multiple impairments. Suggested strategies to further advance disability inclusion in humanitarian programming include: strengthening identification of protection risks and case management services for persons with disabilities; facilitating contextspecific action planning around key guidelines; and engaging the disability movement in advocacy on refugee issues.

 

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

Partnerships for disability research in Africa: Lessons learned in Kinshasa, Democratic Republic of the Congo

ALDERSEY, Heather
WENDA, Delphine Assumani
2015

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Issues concerning individuals with disabilities are under-researched in Africa, and persons with disabilities remain some of the most highly disadvantaged groups. In an increasing era of globalization, partnerships across borders and boundaries to conduct disability research is inevitable. Yet, such partnerships might be complicated by issues such as unequal power dynamics, poverty, and cultural misunderstandings, among others. In this article, the authors reflect upon their experience partnering for disability research across cultures, with one author being a Congolese person with a disability and the other being a Canadian ally. They discuss the nature of their research relationship, challenges they faced while conducting a seven-month study of personhood and support for people with intellectual disabilities in Kinshasa, and how they addressed these challenges. They also outline lessons learned from this partnership and how their past experience collaborating for disability research will shape their future endeavours.

 

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

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