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Critique of deinstitutionalisation in postsocialist Central and Eastern Europe

MLADENOV, Teodor
PETRI, Gabor
2019

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In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

Hearing loss grades and the International classification of functioning, disability and health

OLUSANYA, Bolajoko
DAVIS, Adrian
HOFFMANN, Howard
September 2019

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The World Health Organization (WHO) estimates that 466 million people were living with disabling hearing impairment in 2018 and this estimate is projected to rise to 630 million by 2030 and to over 900 million by 2050. However, these projections are based on a hearing impairment classification that does not fully reflect the provisions of the International classification of functioning, disability and health for assessing all forms of functional impairments. The case is made for a review of the concept of disabling hearing loss adopted by WHO after the recommendation of the Global Burden of Disease (GBD) Expert Group on Hearing Impairment in 2008.

 

Bull World Health Organ. 2019;97(10):725-728

doi: 10.2471/BLT.19.230367

Teaching disability: strategies for the reconstitution of disability knowledge

DÍAZ, Karim Del Rocío Garzón
GOODLEY, Dan
2019

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As teachers of disability studies, working with students from the health and psychological sciences, we tackle some of our pedagogical challenges and offer productive possibilities. We begin by introducing the offerings of disability studies and then consider our first question: how might we invite disability into our teaching? We introduce a Spanish tale – Por cuatro esquinitas de nada – that, while aimed at children and not explicitly engaged with a disability, permits us to engage in inter-textual analyses of disability. We find that students move through different stages of what we term distinction, idealisation and invisibility/concealment. We then address our second question – what does it mean to teach disability? We answer this with reference to the generative practices of two teaching methodologies: disposal and disavowal. We conclude the paper by considering the importance of generating critical theories of disability.

Access into professional degrees by students with disabilities in South African higher learning: A decolonial perspective

NDLOVU, Sibonokuhle
2019

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Background: Former historically disadvantaged social groups such as women, black people and those with disabilities are expected to participate in the skilled labour force that South Africa has pledged to produce for the 21st century. However, in the South African context, research widely neglects access of those into professional degrees in higher learning. There is a need for such an exploration because people with disabilities have been found to be excluded from professional employment.

 

Objectives: Using decolonial theory, this empirical study sought to explore obstacles confronted by students with disabilities at entry in a specific institution of higher learning in South Africa. The aim was to unveil the invisible obstacles and their causes for an effective intervention.

 

Method: A qualitative research design was adopted and in-depth interviews were conducted to collect data from the participants. This particular dimension of research method was chosen to enable dialogue and development of partnership, which is important for collecting rich data.

 

Results: While policies of inclusion still enabled access of all students into professional degrees, there were however inequitable practices, alienation and inequality that excluded students with disabilities at entry. Obstacles seen at surface level were not the real ones; the real ones were the deep-seated issues of coloniality.

 

Conclusion: If the underlying causes of obstacles at entry are not visible to students with disabilities themselves and the responsible stakeholders, students might continue to be oppressed on entry into the professional degrees and in higher learning generally. Obstacles can only be dismantled when there is an awareness about their deep-seated causes.

 

 

African Journal of Disability, Vol 8, 2019

Sightsavers' approach to making health services inclusive for everyone

Sightsavers
April 2019

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Sightsavers has produced a new film that sets out our work to make health care services accessible and inclusive for everyone. It focuses on our programmes in Bhopal, India and Nampula, Mozambique. This highlights how we work and share learnings globally, but also shows how programmes can be made locally relevant by working with partners with direct experience.

The film showcases some of the people who work hard to make our inclusive health programmes a success, from Sightsavers experts and government health workers to leaders of disabled people’s organisations.

To find out more our inclusive health work and how we are developing best practice in terms of inclusive health programmes, visit our website: https://www.sightsavers.org/disability/health/

‘We only got Coca-Cola’: Disability and the paradox of (dis)empowerment in Southeast Nigeria

NWOKORIE, Okechukwu V.
DEVLIEGER, Patrick J.
2019

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Background: Empowerment is the generic name for support services for persons with disability in Nigeria. In it, the elites of the society play leading roles. Special events such as anniversaries, Christmas seasons, wealthy people’s birthdays, investiture of new titles and campaigns before general elections often provide occasions for empowerment programmes.

 

Objectives: This article explores discourses of empowerment of persons with disability in Southeast Nigeria. We concentrate on the relation between local elites and the disability community and how it impacts our understanding of empowerment. Conceptualising empowerment as worldmaking, and disability as something that is ambiguous, we challenge the assumption that the aim of empowerment of disabled people is to improve their (disabled people’s) quality of life.

 

Method: This article relies on research data (collected between January 2014 and January 2017) comprising 72 interviews and participant observations from 27 persons with disability, and 13 social workers and senior government officials.

 

Results: We conclude that discourses of empowerment of disabled people frame disability as loss and tend to conceal the personal stories and survival operations of disabled people.

 

Conclusion: Empowerment discourses ironically provide the platform for local power elites to ‘ride’ to fame on the backs of disabled to extend their influence in society. In the current neoliberal environment of unequal access to opportunities, disabled people must ‘play along’ as a survival strategy. Our qualitative data provide opportunities to reflect on the tensions between the ‘local and the global’, thus indicating how disability issues intersect with other wider questions.

 

 

African Journal of Disability, Vol 8, 2019

Provocations for Critical Disability Studies

GOODLEY, Dan
LAWTHOM, Rebecca
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2019

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This article posits a number of provocations for scholars and researchers engaged with Critical Disability Studies. We summarise some of the analytical twists and turns occurring over the last few years that create a number of questions and concerns. We begin by introducing Critical Disability Studies; describing it as an interdisciplinary field of scholarship building on foundational disability studies theories. Critical Disability Studies scholarship is being produced at an exponential rate and we assert that we need to take pause for thought. We lay out five provocations to encourage reflection and debate: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability? We conclude by making a case for a reflexive and politicised Critical Disability Studies.

Reimagining personal and collective experiences of disability in Africa

HOWELL, Colleen
LORENZO, Theresa
SOMPETA-GCAZA, Siphokazi
2019

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This paper explores understandings of disability in Africa through the personal and collective experiences of a group of postgraduate students at the University of Cape Town in South Africa. The students, as disabled people themselves or practitioners working in the field across Africa, were required to capture their understanding of disability on the continent in a poster, set as a summative assessment task. What emerges from the students’ posters provides valuable insights into the complex social, political and economic factors that influence and shape the experience of disability in Africa. The paper argues that these insights are especially important to existing conceptual thinking around disability and its importance to discussions on Africa and its development. It suggests that grappling more carefully with the experience of disability in Africa brings much needed voices from Africa and the global South into the field of Disability Studies and deepens these debates in valuable and necessary ways.

 

Disability and the Global South, 2019, Vol.6, No. 2

Participation, agency and disability in Brazil: transforming psychological practices into public policy from a human rights perspective

GESSER, Marivete
BLOCK, Pamela
NUERNBERG, Adriano Henrique
2019

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Participation is a little discussed or researched concept in the social sciences, despite its importance in understanding activism. This article presents some theoretical and methodological considerations for promoting social participation and agency for disabled people through the work of psychologists associated with Brazilian public policies. This article takes the form of a discursive study, based on the dialogue between: a) Brazilian legislation on disability; b) Bader Sawaia’s Ethical-Political Psychology; and c) Disability Studies. Based on the assumption that psychological practices should promote participation and agency for disabled people, we present the elements that hinder or control participation. We then present theoretical methodological contributions to build practices that promote participation and agency, highlighting: a) critiques of moral and biomedical models of disability; b) understandings of disability from intersectional perspectives that incorporate it as a category of analysis; c) including disabled people in the construction of research and professional practices disabled people and d) the rupture with ableism, which blocks the participation of disabled people. Participation has shown to be a multidimensional concept that covers a spectrum of aspects – from the practice of activism to the constitution of subjectivity in disabled people.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 2

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

Globalized Food and Pharma: The South Bites Back in Lina Meruane’s Fruta podrida

JÖRGENSEN, Beth E
2019

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One common denominator of the novels and short stories by Lina Meruane (Chile, b. 1970) is the unconventional representation of illness and disability, and a critique of the connections between illness or disability, medicine and globalization. In this paper, I examine her novel Fruta podrida (2007) (rotten fruit) and the challenge it poses to the globalization of food production and pharmacological research as they affect people living in the Global South. This critique is realized obliquely and disturbingly from three distinct subject positions: a Chilean chemist who works for a fruit company in Chile; her half-sister who has diabetes; and a nurse in a New York City hospital. The linguistic and structural complexity of the narrative discourse demands an engagement with the text that places a further demand on its readers to engage with the inequalities and abuses created under globalization.

 

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

Decolonial Embodiment: Fanon, the Clinical Encounter, and the Colonial Wound

UREÑA Carolyn
2019

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Disability studies and the medical humanities have recently garnered increasing attention from academics interested in challenging modern, biological understandings of health and illness that dehumanize and alienate people with disabilities and those who are ill. While these discourses have much to contribute to the understanding of human diversity, including the study of race and ethnicity, the risk of conflating illness, disability, and historical forms of systemic discrimination remains a point of concern. As a black Martinican, clinician, and philosopher, Frantz Fanon draws our attention to the importance of healing the physical, affective, and epistemological wounds of coloniality by attending to the social relations that produce them. Fanon exposes the limits of hegemonic epistemologies of the body, raising the question of what other kinds of knowledge about health and illness are likewise excluded by the coloniality of knowledge. Theorizing the clinic as an important location from which revolutionary thought can emerge, I provide a decolonial framework for understanding how a sustained encounter between critical race and disability studies can generate new conceptions of health and healing that requires thinking about a different kind of pain and suffering not captured by the current rubric but to which we, in the twenty-first century, must nevertheless attend.

 

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

Pastoral ministry and persons with disabilities: The case of the Apostolic Faith Mission in Zimbabwe

SANDE, Nomatter
2019

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Background: The Persons with Disability (PWD) are the minority group dehumanized in the church. The subject of disability is complicated because of the impact of the Judeo-Christian teachings. The Apostolic Faith Mission (AFM) in Zimbabwe is a leading Pentecostal church with a pastoral ministry theology which emphasises divine healing, miracles, signs and wonders. Thus, the space of PWD and how the PWD either connects or benefits from this Pentecostal heritage is a critical gap in this study.

 

Objectives: The objective of this study was to explore the construction of disability through the practices and processes of the pastoral ministry in the AFM.

 

Method: This study followed qualitative research and used the social model of disability as theoretical framework. The data were collected from 26 participants who are PWD and pastors using in-depth interviews, focus groups and participant observations.

 

Results: The results showed the AFM pastoral practices created invisible barriers that militate against PWD. Thus, the pastoral ‘divine solutions’ and ‘triumphalist messages and teachings’ are ‘prescriptive’ and ineffective in reducing ‘the plight of PWD in Zimbabwe’.

 

Conclusion: The study concludes that the pastoral ministry should be ‘one efficient vehicle’ with which the church can care for and ‘transform persons with disabilities’. Pastors should break the glass ceiling by expecting pastors to minister better and more effectively creating a safe space for persons with disabilities. A caring community should be the nature of both the AFM and the pastoral ministry responsible for meeting the needs of the persons with disabilities.

 

African Journal of Disability, Vol 8, 2019

Exploring the concerns of persons with disabilities in Western Zambia

CLEAVER, Shaun
POLATAJKO, Helene
BOND, Virginia
MAGALHÃES, Lilian
NIXON, Stephanie
2018

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Background: Understandings of disability are rooted in contexts. Despite the world’s significant contextual diversity, postcolonial power dynamics allow influential actors from the global North to imagine that most people across the global South understand disability in one generalised way. When it informs programmes and services for persons with disabilities in the global South, this imagining of a single generalised view could reduce effectiveness while further marginalising the people for whom the programmes and services were designed.

 

Objectives: In the interest of better understanding a contextually grounded meaning of disability, we explored the expressed concerns of two organisations of persons with disabilities and their members in Western Zambia.

 

Method: In this qualitative constructionist study, data collection focused upon life with a disability and servicesavailable to persons with disabilities. Data were collected through 39 individual interviews and eight focus group discussions with 81 members of organisations of persons with disabilities. Data were analysed thematically.

 

Results: The participants’ main expressed concern was poverty. This concern was articulated in terms of a life of suffering and a need for material resources. Participants linked poverty to disability in two ways. Some participants identified how impairments limited resource acquisition, resulting in suffering. Others considered poverty to be an integral part of the experience of disability.

 

Conclusion: This study contributes to literature on disability theory by providing a contextually grounded account of a particular understanding of disability and poverty. The study also contributes to disability practice and policymaking through the demonstration of poverty as the main concern of persons with disabilities in this context.

Ubuntu considered in light of exclusion of people with disabilities

NGUBANE-MOKIWA, Sindile A.
2018

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Background: This article emanates from a study funded by the KwaZulu-Natal chapter of South Africa’s National Research Foundation on the ‘Archaeology of Ubuntu’. It explores the notion of ubuntu and disability in a group of Zulu people from four communities within KwaZulu-Natal. The study is based on the notion that ubuntu is humaneness. Being human is linked to notions of care, respect and compassion.

 

Objectives: The article explores the treatment of people with disabilities from the elders’ perspectives in this community.

 

Method: This article is based on qualitative data resulting from structured interviews conducted in the KwaZulu-Natal Province between February and March 2015.

 

Results: The results reveal that society considered the birth of a disabled child as a curse from God and punishment from the ancestors. The results also indicate that people with disabilities were excluded from community activities; marrying a disabled person was unthinkable because they were stigmatised and dehumanised. The work of Hannah Arendt is used to interrogate people’s perceptions of others with disabilities in their communities.

 

Conclusion: The article posits that treatment of people with disabilities is not cast in stone but can be renegotiated and restructured through community engagement to represent genuine inclusion.

Scaling up inclusive approaches for marginalised and vulnerable people. K4D emerging issues report

CARTER, Becky
JOSHI, Anu
REMME, Michelle
July 2018

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This rapid review summarises the evidence on how to scale up inclusive approaches to complex social change. It looks at how to design scalable inclusive change interventions, as well as how to plan and manage the scale-up process. Focusing on interventions with the aim of reaching the most marginalised and transform social norms, it covers programmes aiming to deliver inclusive outcomes for women and girls (with a particular focus on preventing violence against women and girls) and persons with disabilities. To date, many interventions seeking to change harmful gender and disability norms have been implemented as small-scale projects. There are limited experiences of scale-up and fewer evaluations of these experiences. However, there are some documented case studies as well as emerging analysis that draw out lessons learned. From this evidence base, this rapid desk review identifies eight critical issues commonly highlighted as important considerations when scaling up inclusive change interventions:

1. Opportunities for systemic approach, including integrating political and community-level scale-up, and coordinating across multiple sectors and stakeholders

2. Political support for scale-up

3. Strategic choices: balancing reach, speed, cost, quality, equity, and sustainability

4. Catalysing change: tipping points, diffusion effects, and local champions

5. Locally grounded, participatory, and adaptive approaches

6. Long-term approaches with funding models to match

7. Cost-effective and financially feasible scale-up strategies

8. Measuring impact and sustainability.

 

Scale-up pathways are discussed including: horizontal, vertical, functional and organisational.

A number of case studies are given.

Parental Perceptions, Attitudes and Involvement in Interventions for Autism Spectrum Disorders in Sarawak, Malaysia

TEO, Jing Xin
LAU, Bee Theng
2018

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Purpose: This study explores and compares perspectives of educators and parents regarding interventions used in managing Autism Spectrum Disorder (ASD) in Sarawak, Malaysia. Information on parental desires and limitations when selecting and maintaining management will aid in the development of strategies for ASD educators to work effectively with parents and caregivers, and vice versa.

 

Method: This qualitative research employed traditional question and answer interviews with 7 ASD educators and 30 parents. Interviews were semi-structured and questions were open-ended to allow for additional details to be relayed within the scope of the subject matter. Thematic analysis revealed overarching perceptions concerning parental attitudes towards involvement in their children’s interventions, and implications of cultural context.

 

Results: Perspectives were similar regarding the importance of confidentiality from educators and cultural factors playing a major role in content of intervention chosen by parents. Perspectives differed across four themes. Of significance was the way in which both samples viewed parental self-reliance in supplementing interventions and parental attitudes in effort and perseverance. 

 

Conclusion: Parental resources and culture influence ability and attitudes towards involvement. While educators may not agree on certain aspects, mutual appreciation of differing perspectives would benefit the children.

Disability, health and human development

MITRA, Sophie
2018

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This open access book introduces the human development model to define disability and map its links with health and wellbeing, based on Sen’s capability approach. The author uses panel survey data with internationally comparable questions on disability for Ethiopia, Malawi, Tanzania and Uganda. It presents evidence on the prevalence of disability and its strong and consistent association with multidimensional poverty, mortality, economic insecurity and deprivations in education, morbidity and employment. It shows that disability needs to be considered from multiple angles including aging, gender, health and poverty. Ultimately, this study makes a call for inclusion and prevention interventions as solutions to the deprivations associated with impairments and health conditions.

 

Chapters include:

  • The Human Development Model of Disability, Health and Wellbeing
  • Measurement, Data and Country Context
  • Prevalence of Functional Difficulties
  • Functional Difficulties and Inequalities Through a Static Lens
  • Dynamics of Functional Difficulties and Wellbeing
  • Main Results and Implications

 

Audiology and speech-language pathology: Practitioners’ reflections on indigeneity, disability and neo-colonial marketing

PILLAY, Mershen
KATHARD, Harsha
2018

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Indigenous peoples are part of those populations who are underserved by Audiology and Speech-Language Pathology. They include minority world populations like Aboriginal Australians/Canadians and majority world peoples in Asia, Africa and the Americas. How do Western-oriented rehabilitation/disability practitioners practice with Others? In this article, we reflect on our own experiences and use ideological critique to reveal the fault lines in Audiology and Speech-Language Pathology practices. Along with other examples, we analyse South African data, viz.: canonical articles as illuminators and our works (c1990-). We reveal predominant practices/ideologies that contribute to the production of disability. We focus on three interconnected issues (i) the construction of rehabilitation/disability practitioners as (il)legitimate providers for indigenous peoples; (ii) the engagement of epistemic violence across disability practice, educational and policy domains; and (iii) the authoritative (re)inscription of indigenous persons as disabled by transnational practitioners who, like their corporate counterparts, market practices. Professional marketeering is infused with bigotry, masked as benevolence and resourced/justified by global, neo-liberal policies (e.g., international conventions) and funding. We conclude that disability practices and indigeneity in the post-colonial moment capitalises on established settler-native relationships to continue dominance over Others’ lives. Finally, we present a way forward, namely the relationship of Labouring Affinities which promotes deimperialisation and decolonisation practices to enable professional transformation.

 

Disability and the Global South, 2018, Vol.5, No. 2

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