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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 new way to measure child functioning

UNICEF
WASHINGTON GROUP
May 2017

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"In recognizing the need for a set of questions that would produce internationally comparable data on children, the Washington Group formed a subgroup in 2009 that is chaired by the National Statistical Office of Italy (ISTAT). UNICEF joined the subgroup in 2011.

The first main activity of the subgroup was the development of a short set of questions to reflect current thinking on child functioning for inclusion in censuses and surveys. The new module uses the ICF-CY as the conceptual framework and relies on a functional approach to measuring disability.

The Washington Group/UNICEF Module on Child Functioning, finalized in 2016, covers children between 2 and 17 years of age and assesses functional difficulties in different domains including hearing, vision, communication/comprehension, learning, mobility and emotions. To better reflect the degree of functional difficulty, each area is assessed against a rating scale. The purpose is to identify the subpopulation of children who are at greater risk than other children of the same age or who are experiencing limited participation in an unaccommodating environment. The set of questions is intended for use in national household surveys and censuses"

The module is being translated into multiple languages. Supporting documentation, including a concept note, tabulation plan, templates for reporting, guidelines for interviewers and training materials are also available.

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.

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)

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

Disability studies and ability studies : two lenses to investigate peace

WOLBRING, Gregor
November 2013

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This special edition journal explores the links between peace studies and disability studies. This issue presents four articles that thematised peace and disabled people in different ways. One article looks explicitly at the nexus of the academic fields of disability studies and ability studies, while three articles look at different groups of disabled people without using the frame of disability studies

Peace Studies Journal, Vol 6, Issue 4

Promoting empowerment|Emancipatory research in community-based rehabilitation programmes : a guide for CBR programmes managers

DEEPAK, Sunil
2012

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This practical guide is written for organizations and persons involved in CBR projects. It is also targeted at DPOs, especially those working at community and peripheral levels. The information provides a straight forward guide for people working in CBR programmes to carry out simple emancipatory research (ER). Examples are provided from successful ER projects. This resource is useful to anyone interested in ER in community-based rehabilitation programmes

Atlas : global resources for persons with intellectual disabilities

SAXENA, Shekhar
et al
2007

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This report provides detailed information about the resources and services for people with intellectual disabilities based upon a study of 147 countries. The methods of the study, themes of the findings and recommendations for the future are given, as well as detailed tables, figures and maps. Intellectual disability is one of the most vulnerable groups among disability categories. This study would be useful for people seeking information about intellectual disabilities worldwide

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