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The life stories and experiences of the children admitted to the Institute for Imbecile Children from 1895 to 1913

Du PLESSIS, Rory
August 2020

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Background: South African scholarship on intellectual disability has produced a sizeable body of research, yet there are numerous areas where there is a paucity of research. One area in which there is a conspicuous paucity of research is historical studies of people with intellectual disability (PWID). The existing works devoted to the history of PWID in South Africa are primarily focused on the legal provisions and institutions for the protection and care of PWID. Missing from these works are the life stories and experiences of PWID.

 

Objectives: The article offers a study devoted to the life stories and experiences of the children with intellectual disability (CWID) who were admitted to the Institute for Imbecile Children from 1895 to 1913. The institute opened in April 1895 in Makhanda (formerly known as Grahamstown), South Africa. The institute was the first of its kind in the Cape Colony for CWID.

 

Method: The study presents a qualitative investigation of the life stories and experiences of the children that were recorded in the institute’s casebook. The entire set of 101 cases contained in the casebook was analysed by adopting a Gadamerian approach to hermeneutics.

 

Results: The examination of the institute’s casebook identified several broad themes relating to the children’s admittance, daily life at the institute and their routes out of the institute. The study also extols the individuality of each child’s life story to provide an awareness and richer appreciation of the humanness and personhood of the children.

 

Conclusion: The article contributes a positive narrative to the identity and the history of South African children with intellectual disability living in the late 19th and early 20th centuries.

 

 

African Journal of Disability, Vol 9, 2020 

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

BURCH, Leah
2017

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

Troubling school toilets: resisting discourses of ‘development’ through a critical disability studies and critical psychology lens

SLATER, Jen
JONES, Charlotte
PROCTER, Lisa
2017

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This paper interrogates how school toilets and ‘school readiness’ are used to assess children against developmental milestones. Such developmental norms both inform school toilet design and practice, and perpetuate normative discourses of childhood as middle-class, white, ‘able’, heteronormative, cissexist and inferior to adulthood. Critical psychology and critical disability studies frame our analysis of conversations from online practitioner forums. We show that school toilets and the norms and ideals of ‘toilet training’ act as one device for Othering those who do not fit into normative Western discourses of ‘childhood’. Furthermore, these idealised discourses of ‘childhood’ reify classed, racialised, gendered and dis/ablist binaries of good/bad parenting. We conclude by suggesting new methodological approaches to school toilet research which resist perpetuating developmental assumptions and prescriptions. In doing this, the paper is the first to explicitly bring school toilet research into the realms of critical psychology and critical disability studies.

Slipping and holding minds: A psychosocial analysis of maternal subjectivity in relation to childhood disability

Young, Lisa Saville
BERRY, Jessie
2016

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Background: This paper elucidates a methodological approach to interview text that tries to acknowledge the psychosocial nature of disability and thereby ensuring that empirical work in disability studies complements theoretical arguments already developed.

 

Objectives: The aim of this study is to outline a psychosocial conceptualisation of maternal subjectivity in relation to childhood disability and to apply this conceptualisation as an analytic tool to segments of an interview with a mother of a child with physical and developmental disabilities.

 

Method: Drawing on psychoanalysis and attachment literature alongside critical social psychology we take readers through the analysis of an interview extract with a particular mother. Through a fine grained analysis, we demonstrate the value of attending to the affective processes in and around the text rooted in the particular intersubjective exchange (‘here and how’) of the interview and the particular socio-historical context (‘there and then’) in which the mother, child and researcher are located.

 

Findings: The reading draws attention to discourses that position this particular mother and her children in particular ways while also pointing to investments in these discourses such that these discourses are not purely social but play affective functions.

 

Conclusion: This paper demonstrates the value of using multiple lenses to read the text, seeking to understand what is going on from within each lens (discursive/social, interpersonal, intrapsychic), while also seeking to disrupt this understanding as we take up the position of a different lens. This approach enables us to hold onto the complexity and locatedness of maternal subjectivity for mothers of children with disabilities.

Sightsavers disability disaggregation project : India mid-term review report

JOLLEY, Emma
THIVILLIER, Pauline
September 2015

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‘This Mid Term Review (MTR) report contains information on the first six months (July – March) of the disability disaggregation pilot project taking place in Bhopal, India. The report includes information on the processes in place at the different locations to collect data disaggregated by disability and initial results. It also captures attitude, knowledge and experiences of programme managers, decision makers and data collectors around disability, their challenges, and the experiences of Sightsavers’ implementing staff’

Voices of Pacific children with disability : films

BURGESS, Kasimir
June 2015

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A collection of videos by Kasimir Burgess on the experiences of children with disability in Papua New Guinea and Vanuatu. In these videos, the lived experiences of disabled children are featured providing useful insights into their hopes and aspirations as a useful research tool

Project Re•Vision: disability at the edges of representation

RICE, Carla
CHANDLER, Eliza
HARRISON, Elisabeth
LIDDIARD, Kirsty
FERRARI, Manuela
2015

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The representational history of disabled people can largely be characterized as one of being put on display or hidden away. Self-representations have been a powerful part of the disability rights and culture movement, but recently scholars have analysed the ways in which these run the risk of creating a ‘single story’that centres the experiences of white, western, physically disabled men. Here we introduce and theorize with Project Re•Vision, our arts-based research project that resists this singularity by creating and centring, without normalizing, repre- sentations that have previously been relegated to the margins. We draw from body becoming and new materialist theory to explore the dynamic ways in which positionality illuminates bodies of difference and open into a discussion about what is at stake when these stories are let loose into the world.

Disability and social protection forum

INTERNATIONAL CENTRE FOR EVIDENCE IN DISABILITY (ICED)
April 2015

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This webpage presents useful information and materials from a forum held at London School of Hygiene and Tropical Medicine about disability and social protection. Session one set the scene on disability and social protection, and session two focused on the priorities and opportunities to build on the evidence on social protection and disability. Related summaries, audiovisuals and powerpoints are provided from the Forum

Disability and Social Protection Discussion Forum

London, UK

26 March 2015

Education through an ability studies lens

WOLBRING, Gregory
YUMAKULOV, Sophya
2015

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The purpose of this article is to engage with ability expectations evident in the education setting. The authors provide quantitative data on the ability expectation sentiment of children in the education setting from 1851-2014, using the NYT as a source and discuss the future impact of changing ability expectations including the ability expectation that humans enhance themselves beyond the species-typical for the education system (section 3). It also discusses the term learning disability (LD) through the lens of changing ability expectations (section 4) and posit sthat the ability studies framework allows for a new community of practice bringing together people and ideas from disability studies and other fields in an innovative way

Zeitschrift für Inklusion 10(2)

Disability-inclusive healthcare in humanitarian camps: Pushing the boundaries of disability studies and global health

MIRZA, Mansha
2015

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A significant proportion of forced migrants live in humanitarian camps located in remote regions of the global South. Disabled persons have been historically neglected within camp programs across all service sectors, especially healthcare. This paper describes an exploratory research study on healthcare access for forced migrants with disabilities in the context of humanitarian camps. Based on the methodological framework of rapid ethnography, the research involved guided tours, community mapping exercises, ethnographic observations, and semi-structured interviews in a refugee camp in southern Africa. Additional key informants from other sites were interviewed remotely using a convenience sampling strategy. Several important insights emerged from the research including: misperceptions about the health-related needs of disabled persons, their specialized health needs falling outside the ‘social minimum’ of humanitarian healthcare, and concerns about distributional ethics in relation to disability-inclusive healthcare. The research also highlighted barriers and strategies for addressing disability-specific health needs given significant resource constraints in humanitarian camps. These findings are discussed in light of practical and theoretical challenges in the fields of disability studies and global health.

 

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

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

Include us in education! : a qualitative research study on barriers and enablers to education for children with disabilities in Nepal

ZUURMOND, Maria
et al
December 2014

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A 2013 Plan study across 30 countries found that children with disabilities were on average 10 times less likely to go to school than children without disabilities. This report presents the findings of a follow-up second phase to the research with a qualitative study on barriers and enablers to education for children with disabilities in Nepal. The research looks at the experiences of 21 children aged 6 to 16 years (8 of them had dropped out of school while one had never been enrolled) through in-depth interviews conducted with 21 families (20 caregivers and 13 children), 9 key informant interviews, and visits to two special schools and one integrated school. The report presents the findings and makes recommendations for the way forward

Include us in education! : a qualitative research study on barriers and enablers to education for children with disabilities in Nepal : executive summary

December 2014

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A 2013 Plan study across 30 countries found that children with disabilities were on average 10 times less likely to go to school than children without disabilities. This executive summary report presents the findings of a follow-up second phase to the research with a qualitative study on barriers and enablers to education for children with disabilities in Nepal

Dis/ability and austerity: beyond work and slow death

GOODLEY, Dan
LAWTHOM, Rebecca
RUNSWICK-COLE, Katherine
2014

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The forthcoming book Dis/ability Studies: Theorising Disablism and Ableism argues that we are living in an historical epoch which might be described as neoliberal-ableism, in which we are all subjected to slow death, increased preca- rity and growing debility. In this paper we apply this analysis to a consideration of austerity with further reference to disability studies and politics.

Research & humanities in medical education (RHiME)

DHALIWAL, Upreet
et al
March 2014

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Research and Humanities in Medical Education (RHiME) is an open access, peer-reviewed online journal with the vision to blend humanities with the sciences in medical education. It aims to encourage contributions from and discussion between teachers and students, doctors and patients, the sick and their care-providers, and between health policy makers and policy users

Childhood disability and malnutrition in Turkana Kenya : a summary report for stakeholders and policy

KISIA, James
et al
2014

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This study aimed to assess whether children with disabilities were included within humanitarian and food security response programmes and whether there was an association between disability and malnutrition. The fieldwork was conducted in 2013 in the Turkana region of Kenya, a region repeatedly classified as experiencing a humanitarian emergency, and used both qualitative and quantitative methods. The key finding of the report is that children with disabilities are more likely to be malnourished and the key recommendations are that children with disabilities should be targeted in food aid and food assistance programmes, and that further efforts are needed to include children with disabilities in education.   The report is intended for stakeholders to inform policy

Research summary : childhood disability and malnutrition in Turkana Kenya

KISIA, James
et al
2014

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This report summarises a study that aimed to assess whether children with disabilities were included within humanitarian and food security response programmes and whether there was an association between disability and malnutrition. The fieldwork was conducted in 2013 in the Turkana region of Kenya, a region repeatedly classified as experiencing a humanitarian emergency, and used both qualitative and quantitative methods. The key finding of the report is that children with disabilities are more likely to be malnourished and the key recommendations are that children with disabilities should be targeted in food aid and food assistance programmes, and that further efforts are needed to include children with disabilities in education.  The report is intended for stakeholders to inform policy 

Impact Assessment of a Vocational Training Program for Persons with Disabilities in Bangladesh

NURI, Reshma Parvin
HOQUE, Tohidul
WALDRON, Samuel Matthew
AKAND, Mustafa Kamal
2012

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Purpose: The aim of this study was to evaluate the effectiveness of a vocational training programme in enabling 261 persons with disabilities to find employment in Bangladesh.

 

Methods: A qualitative method, which employed interviews and focus group discussions, assessed the effect of the training programme on key individual, societal and physical factors set out by the WHO International Classification of Functioning, Disability and Health (2001).

 

Results: 157 persons with disabilities (60%) secured employment after training. Of these, 74% reported that they were able to provide a better livelihood for their families, 92% reported increased social acceptance, and 83% reported improvement in overall quality of life. Of those who did not find employment, 15% cited issues related to the training course, 6% mentioned discriminatory attitudes of potential employers and 12% had problems related to physical access.

 

Conclusions and Implications: These results suggest that the vocational training programme improved the (re)entry of persons with disabilities into employment, which in turn aided their rehabilitation. However, discriminatory attitudes towards them at the workplace were reported.

 

 

Disability, CBR and Inclusive Development, Vol 23, No 3

FINAL REPORT - Life as a disabled child : a qualitative study of young people’s experiences and perspectives

SHAKESPEARE, Tom
et al
March 2005

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This report documents the results of a project to explore disabled children’s (11 – 16 years old) experiences, and their perceptions of impairment; of services; and of their social relationships with family, peers and professionals. The study involved over 300 children in a range of settings and used qualitative methods.
The research highlighted an atmosphere of resentment towards the comparatively high levels of adult surveillance disabled children faced, as opposed to their non-disabled peers, along with the varying degrees to which the word ‘disabled’ and the concept of disability had been appropriated and understood by disabled children themselves. Finally, it alluded to the presence of multiple barriers to inclusion (as generally understood by the social model) that disabled children were still facing on a regular basis

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