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Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Disability Inclusive Development - Bangladesh Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Bangladesh?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Bangladesh. It will be helpful for anyone interested in disability inclusion in Bangladesh, especially in relation to stigma, employment, education, health, and humanitarian issues.

Disability Inclusive Development - Nigeria Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nigeria?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nigeria. It will be helpful for anyone interested in disability inclusion in Nigeria, especially in relation to stigma, employment, education, health, and humanitarian issues.

Loneliness in life stories by people with disabilities

TARVAINEN, Merja
2020

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This study investigates loneliness in life stories by people with disabilities. By approaching loneliness from a relational perspective, this study attempts to illustrate how loneliness and disability are intertwined in the life course. The research question was as follows: How do people with disabilities understand loneliness in their life stories? Life story data ‘Life of Disabled Persons in Finland 2013–2014’ was analysed with a narrative life course approach. Loneliness was narrated in accordance with normative life course expectations. People with disabilities narrated loneliness as unbelonging in childhood, disjointed youth and disaffiliation to normative institutions in adulthood. This study suggests that relation between loneliness and disability concern the conditions of inclusion that is the conditions of living and telling.

  • Loneliness involves both unwanted emotions and social isolation. 
  • In many societies, both loneliness and disability bear a stigma. This so-called double stigma affects the lives of people with disabilities.
  • This study explores loneliness and disability in life stories by people with disabilities in Finland from a life course perspective. Although scholars have widely studied loneliness in Finland, they have not studied loneliness in people with disabilities in any great depth.
  • Loneliness in life stories by people with disabilities was narrated in relation to a sense of bodily difference and occurred as a disconnection from a socially ‘standard’ life course. Loneliness was located within three main phases: childhood, youth and adulthood. Negative attitudes towards disability feed social isolation and emotional loneliness.
  • Further research on disability and loneliness throughout the life course as well as more discussion about the conditions of inclusion and the emotional patterns of social relations are needed.

What is good personal assistance made of? Results of a European survey

MLADENOV, Teodor
2019

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This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Belaynesh
VAN ENGEN, Marloes
VAN DER KLINK, Jac
SCHIPPERS, Alice
2017

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This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

“Our children have the right to an education too”: Strategies employed by Orange Farm Caregivers of Children with Disabilities in Pursuit of the Right to a Basic Education

Elphick, Jean
De SasKropiwnicki, Zosa
Elphick, Rosalind
2016

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Purpose: This paper aims to understand the agency that caregivers who participated in a CBR empowerment component programme exercised, in order to promote the rights of their children with disabilities to a basic education.

 

Methods: An interdisciplinary theoretical framework and qualitative methodology were used to examine the agency and the opportunity structures within which the caregivers operate. Focus group discussions, case study interviews and secondary Programme data were analysed using manual thematic analysis.

 

Results: Thousands of children with disabilities in South Africa are effectively denied the right to a basic education as a result of discriminatory norms, stigmatising discourses and unjust power relations. Yet, a group of caregivers have successfully advocated for their children with disabilities in the township of Orange Farm, Gauteng. Their lobbying has contributed to the establishment, by the State, of a new school.

 

Conclusion and Implications: The findings suggest that human rights advocacy movements, as well as disability organisations, would do well to recognise and encourage the power and agency possessed by caregivers of children with disabilities. Catalysing civic action and providing opportunities for active citizenry and self-help seem to nurture increased efficacy and competence at navigating systems and accessing rights. While advocacy organisations may act as proxy agents, direct and collective agentic strategies should be nurtured. 

 

In implementing inclusive education, policy makers and the Department of Education should recognise the role that caregivers of children with disabilities can play, and the potential contribution that their motivation, resourcefulness, and disability-related knowledge can make.

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.

Training CBR Personnel in South Africa to contribute to the Empowerment of Persons with Disabilities

RULE, S
2013

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Purpose: Recent conceptualisations of community based rehabilitation include empowerment of persons with disabilities as a key activity. This article reports on a study which explored the training of mid-level CBR workers in South Africa, with a specific focus on the ability of the course participants to address the oppression and empowerment of persons with disabilities.

 

Method: Over a three-year period, one cycle of action research was conducted in a non-government organisation that conducts mid-level CBR training in South Africa. Data collection methods included in-depth interviews with staff, students and past graduates of the course, document analysis, participatory rural appraisal techniques and two focus group discussions with the students’ clients.

 

Results: Personnel, who had been trained in CBR before the year 2003, were found to have some difficulty in explaining the social model of disability and the oppression of persons with disabilities at a cultural and structural level. It was noted that after changes were implemented in the CBR course, the students had an orientation to working with, rather than for, persons with disabilities. They began to understand the complexities of empowerment and also engaged in social action to address the oppression of persons with disabilities.

 

Conclusions: The CBR Guidelines require a new skill-mix in mid-level CBR personnel. This study illustrates a possible training approach which can contribute to the development of these skills.

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