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The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

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 

Experiences of teaching sexual and reproductive health to students with intellectual disabilities

NELSON, Becky
PETTERSSON, Karen Odberg
EMMELIN, Maria
2020

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There is growing awareness and international commitment to improving sexual and reproductive health for persons with intellectual disabilities. Despite this, people with intellectual disabilities continue to face stigma and have limited access to sexual health education and information. This qualitative phenomenological study uses data from 10 interviews to describe what it means to teach sexual and reproductive health and rights to students with intellectual disabilities at special-needs schools in southern Sweden. The meaning of teachers’ experience is described through their efforts to ‘accept the challenge to coach special-needs students into adulthood’. Findings show that sexual and reproductive health in special-needs schools covers a broad range of topics and that the teacher must adapt to students’ shifting needs. They also reveal that teachers are motivated and have access to the necessary resources to teach sexual and reproductive health but feel they lack the skills to address students’ particular sexual health issues, including questions of culture and religion. Schools are the main source of sexual health information in Sweden and therefore play a crucial role in providing equal education and promoting public health.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Cultural competence in lifelong care and support for individuals with intellectual disabilities

VAN HERWAARDEN, Aniek
ROMMES, Els W M
PETERS-SCHEFFER, Nienke C
2019

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Objectives: Although an extensive amount of research has been devoted to models defining cultural competence of healthcare professionals in short-term care, there is unclarity about the cultural competencies that professionals providing lifelong care and support should have. The current study aimed to explore which cultural competencies are used by these healthcare professionals, and whether these competencies enabled them to make cultural adaptations to their regular care practices.

 

Design: To investigate cultural competencies and cultural adaptations, semi-structured in-depth interviews were conducted with eight professionals who provide lifelong care and support to individuals with intellectual disabilities. Five cultural competencies were explored: awareness, knowledge, skills, motivation, and encounters.

 

Results: A thematic analysis of the interviews revealed that professionals providing lifelong care and support used all cultural competencies in their care practices. Moreover, our analysis suggested that these competencies could be categorized as either practical or analytical cultural competencies. Although these competencies were conditional in order to make cultural adaptations to care practices, the presence of cultural competencies did not automatically lead to these cultural adaptations. Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

 

Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

Mental health among Sami people with intellectual disabilities

GJERTSEN, Hege
2019

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The first living condition-survey among people with intellectual disability in Sami areas in Norway was conducted in 2017. The purpose of this article is to present and discuss results from the living-condition study, with a focus on the results related to mental health and bullying as a risk factor for poor mental health among people with intellectual disability and a Sami background. We have conducted a questionnaire survey among people with intellectual disability in Sami areas, with and without a Sami background (N = 93). People with intellectual disability have poorer mental health compared to the population in general and those with Sami background have the poorest mental health. Bullying is one of several factors that increase the risk of poor mental health among people with intellectual disability and Sami background. Having a Sami background makes people with intellectual disability more disposed to poor mental health.

‘We need “culture-bridges”: professionals’ experiences of sex education for pupils with intellectual disabilities in a multicultural society

LÖFGREN-MÅRTENSON, Charlotta
OUIS, Pernilla
2018

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This study aimed to explore how sex education in special schools in Sweden is influenced and challenged by the multicultural aspects of modern society. In particular, it sought to explore professio- nalls' experiences of sex education and of honour-related experiences among young people with intellectual disabilities. Data from five individual interviews and one focus groups with four profes- sionals were thematically analysed using sexual scripts as a theoretical framework. The results reveal an ambivalent honour-related script geared toward pupils with intellectual disabilities from cul- tural backgrounds differing from those of the Swedish mainstream. The provision of sex education, including information about hon- our-related experiences, is especially important because of these young people’s vulnerability; however, addressing the subject effectively is sensitive and complicated. Colleagues with different cultural backgrounds can act as ‘culture bridges’ for professionals who lack strategies, methods and materials. Increasing profes- sionals’ prerequisite qualifications (e.g. further education, supervision) and adopting autonomy-promoted conduct can empower pupils with intellectual disability to exercise autonomy over their sexuality outside their immediate cultural context.

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

The medical inadmissibility of intellectual disability: A postcolonial reading of Canadian immigration systems

SPAGNUOLO, Natalie
2016

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This article builds upon existing critiques of Canada’s immigration system by focusing on the medical inadmissibility of young people labelled with intellectual disabilities. In considering how the Canadian state regulates applications for permanent residency, it explores discourses and practices of citizenship which invoke mutually-constituting identity markers such as disability and race. A close reading of case studies involving family applicants, demonstrates how immigration policies and legal systems frame the needs of young people labelled with intellectual or ‘profound’ disabilities as a burden to Canadian society. Individuals who were initially denied admission to Canada due to their diagnostic label, experience disability-related discrimination in different ways depending on the role of their perceived racial, gender, and class identities, among others. The individuals considered in this study navigate intersectional identities and ableist legal systems in their efforts to resist discrimination and win a review of their residency applications. This analysis will show that applicants are forced to work through the logic of medical assessment processes to favourably position their children within impairment hierarchies which rank intellectual disability as ‘too disabled’ to be admissible.

 

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

Young people with intellectual disability—The role of self-advocacy in a transformed Swedish welfare system

TIDEMAN, Magnus
SVENSSON, Ove
2015

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A growing number of young people in Sweden with intellectual disability have organized themselves during the last 15 years in self-advocacy groups for socializing, empowerment, and expressing opposition to the norms and attitudes in a society that labels them as disabled. At the same time, the Swedish welfare system has transformed dramatically with processes of far-reaching individualization, closure of the major institutions, decentralization of responsibility from the state to local governments, and an emerging welfare market where service users are turned into customers. The aim of this article is to analyse and discuss the significance of self-advocacy in the new welfare context. Data were collected over a period of more than 10 years using repeated interviews with members of two self-advocacy groups and participation observations. Findings suggest that participation in self-advocacy groups opens up members for increasing health and well-being through new roles and identities, and it strengthens their control over everyday life. Support is still needed, however, but in new ways; otherwise, the restrictions of the institutions will simply be reconstructed in the new welfare system.

Sterilisation and intellectually disabled people in New Zealand—still on the agenda?

HAMILTON, C
2012

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Support through care and protection within a medical framework, rather than through the idea of independence within the least restrictive environment, continues to guide service provision for intellectually disabled people in the sexuality area. Past practices have included use of involuntary sterilisation. This article outlines the outcome of a search for information undertaken because of concerns that use of sterilisation-related procedures may remain embedded in contemporary approaches to sexuality support management. Verified instances of hysterectomy carried out between 1991 and 2001 were uncovered. Documents tabled at a Parliamentary Select Committee in 2003 expressing concerns about use in relation to young disabled girls were also found. Requests for sterilisation-related procedures exemplify how the right of all vulnerable citizens to full bodily integrity is currently adjudicated in New Zealand. It is suggested that further research is needed to pinpoint and address the underlying social customs through which requests for such procedures are negotiated and resolved.

On the outskirts of normality: Young adults with disabilities, their belonging and strategies

OLIN, Elisabeth
JANSSON, Bibbi Ringsby
2009

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During the last decades, the living conditions for young people with disabilities have changed dramatically in Sweden, as well as in other parts of theWestern world.The boundaries between what is considered normal as opposed to different have become less clear as a result of these changes. This has been followed by new problems regarding integration and changing patterns of marginalization. The aim of this study was to gain a deeper understanding of the ways in which young adults’ social identity is shaped by their dual belongings: to the category of individuals with disabilities as well as to mainstream society. In- depth interviews were carried out with 15 young adults with mental disabilities and mild intellectual disabilities occasionally combined with various forms of social problems. The analysis focused on the ways in which the young adults related to what they describe as normal and different as well as their strategies for navigating between them. The data was subsequently divided into three categories: Pragmatic Navigators, Critical Challengers, and Misunderstood Rebels, which reflect the ways in which the respondents describe themselves and the perspective they have developed to manage their existence.

A custom distorted : beliefs about sexual abuse involving teenagers with intellectual disability at a rural setting in South Africa

PHASHA, N
MYAKA, Lucy
2009

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This paper is based upon the findings of a study that took place in a rural setting in KwaZulu-Natal, South Africa. It describes the social problem of sexual abuse of teenagers with intellectual disabilities by analyzing the roots of common misconceptions of intellectual disability, which render these teenagers vulnerable to sexual abuse. This paper is useful for anyone interested in learning more about disability and misconceptions of disability in Africa

Talking about sex and relationships : the views of young people with learning disabilities

CHANGE
2009

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"This report talks about the Sex and Relationships project. This was a 3-year project that took place at CHANGE, a leading national organisation led by disabled people that is based in Leeds, in England, that fights for the rights of people with learning disabilities...The project found out about the views and experiences of young people with learning disabilities about sex and relationships"

Sexuality and relationships education for people with down syndrome

WOOD, Mandy
2004

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"This article describes why Sexuality and Relationships Education (SRE) as part of the school curriculum is especially important for individuals with Down syndrome and how parents and professionals can work together to ensure that it is delivered effectively"
Down Syndrome News and Update 4(2)

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