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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.

Disability under occupation : at the congruence between conflict, religion, & society in Palestine

RASHID, Omar
January 2015

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A dissertation on the Palestinian experience of disability under Israeli territorial occupation. The following key research questions were considered under this dissertation. "First, to locate the perceptions of disability among the disabled in the occupied territories of Palestine, in light of their religious affiliation. Second, to investigate the realities of the disabled within Palestine; and third, to enquire as to whether there had been any differences in the perceptions of disabilities and the realities of those who were injured in conflict, and those who were born with impairment" These questions were answered through a hybrid-methods system of research, with a mix of qualitative and quantitative methods being used

 

Dissertation submitted in part fulfilment of the requirements for a Masters degree at the University of Birmingham

The user has given permission for the original dissertation document to be uploaded to be reproduced and made publicly available on the Source website

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)

Mental illness, poverty and stigma in India : a case-control study

TRANI, J F
BAKHSHI, P
KUHLBERG, J
NARAYANAN, S S
VENKATARAMAN, H
MISHRA, N N
GROCE, N
JADHAV, S
DESHPANDE, S
January 2015

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The effect of experienced stigma on depth of multidimensional poverty of persons with severe mental illness (PSMI) in Delhi, India, controlling for gender, age and caste was assessed. A case–control study was conducted from November 2011 to June 2012. 647 cases diagnosed with schizophrenia or affective disorders were recruited and 647 individuals of same age, sex and location of residence were matched as controls at a ratio of 1:2:1. Conclusions: Public stigma and multidimensional poverty linked to SMI are pervasive and intertwined. In particular for low caste and women, it is a strong predictor of poverty. Exclusion from employment linked to negative attitudes and lack of income are the highest contributors to multidimensional poverty, increasing the burden for the family.

Representation, access and contestation: Facebook and vision impairment in Jordan, India, and Peru

PAL, Joyojeet
ALFARO, Ana Maria Huaita
AMMARI, Tawfiq W
CHHABRA, Sidharth
LAKSHMANAN, Meera
2015

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This paper presents qualitative research on the use of Facebook by visually impaired people and organizations representing them in Jordan, Peru, and India. We found that individuals and organizations have very different motivations and pathways for using social media. Social media serve as a means to help individuals with vision impairments to expand their social circles, network with casual acquaintances, and find various kinds of social and technical resources independently. However on issues of representation we found that social media have the potential to play a double-edged sword, reinforcing in some cases the same stereotypes that individual users of assistive technology (AT) sought to overcome by using technology in their professional lives. We find that individuals often characterize social media and assistive technology in the same vein — suggesting that for many parts of the global South, the dramatic change in the means and ability to leverage social and professional possibilities has not come from any one technology alone, but from a broader evolution of the technological environment available to people with vision impairments. Access to social media and technology disrupt an environment in which social and economic spaces for people with disabilities are still a zone of contestation between a dominant discourse of vision impairment enforced by generations of negative representations of disability, and a new world of technology users challenging representations and assumptions as engaged, connected professionals.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 3

The African report on children with disabilities : promising starts and persisting challenges

THE AFRICAN CHILD POLICY FORUM (ACPF)
December 2014

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This pan-African report describes and analyses the cultural, social, physical and other societal barriers preventing children with disabilities in Africa from realising their full human potential. It also describes the opportunities, initiatives and good practices that exist, that indicate the progress, albeit insufficient, that has been made towards realising the rights for children with disabilities in Africa. Recommendations and priorities for action are presented which promote inclusive and accessible laws, policies, and programmes for children with disabilities throughout Africa. The report is based on extensive research and evidence generated by the African Child Policy Forum (ACPF) and other institutions

Changing attitudes to child disability in Africa

THE LANCET
December 2014

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This brief editorial published in the Lancet highlights the situation of disabled children in Africa with reference to the 2014 publication of The African Report on Children with Disabilities by The African Child Policy Forum

 

The Lancet, Vol 384, No. 9959

Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia

PETERS, R. M. H
HOFKER, M. E
VAN BRAKEL, W H
ZWEEKHORST, M B M
SEDA, F S S E
IRWANTO, I
BUNDERS, J F G
2014

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Purpose: This study analyses the experiences of women affected by leprosy, taking into consideration whether they concealed or disclosed their status, and looks specifically at their ‘agency’. The aim is to provide recommendations for stigma-reduction interventions.

 

Methods: The study population consisted of women affected by leprosy who live in Cirebon District, Indonesia. Study subjects were purposively selected on the basis of characteristics such as age and role in the community. After informed consent was obtained, they were interviewed in their homes. Data was collected through semi-structured in-depth interviews. Analysis was done with six points of focus: who knows, care, social stigma, feelings, self-isolation and agency.

 

Results: In total, 53 women were interviewed. Eight were omitted due to ambiguity over who knew about their leprosy status. Five different categories of ‘disclosure’ were identified, ranging from 1 woman who concealed completely to 19 (42%) who disclosed fully. Disclosure created possibilities for care and support, which 84% mentioned they received. In contrast, disclosure was also found to be linked to negative feelings, isolation and social stigma, which 18 women experienced. The women coped with this through acceptance, comforting themselves, trusting in God, focussing on recovery, friendship or finding inspiration in others. 

 

Conclusions: An analysis of these experiences helps to understand how women affected by leprosy are coping, and what they are already doing for and by themselves. This could be a starting point for more appropriate and effective stigma-reduction interventions. It is recommended to consider the following: i) assisting people with their choice, if any, of either concealment or disclosure, ii) the appropriateness of any intervention for people who (want to) conceal their illness, iii) the existing sources of care and support, and iv) the inner strength demonstrated and its three sources (spirituality, relationships and the desire to be cured).

Freedom to read: A personal account of the ‘book famine’

WATERMEYE, Brian
2014

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Even in the digital age, access to literature and other information for people with print impairments remains extremely poor, especially in the developing world. Reading access holds cascading implications for education, economic empowerment, social participation and self-worth. In June 2013 member states of WIPO (the World Intellectual Property Organization)concluded a landmark treaty to reduce copyright impediments to the dissemination of literature to print impaired people. Its effectiveness is not yet clear. Meanwhile, critics hold that disability studies’ analyses have too often lacked insight into the personal and psychological ramifications of exclusion. This article provides an account of the ‘book famine’ from the perspective of a print impaired South African disability researcher, arguing that thorough investigation of the impressions of exclusion is necessary for change. The account highlights the personal, even malignant psychological reverberations of deprivations such as the ‘bookfamine’, which may carry traumatic effects which cement the status quo.

Inheritance, poverty, and disability

GROCE, Nora Ellen
LONDON, Jillian
STEIN, Michael Ashley
2014

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Inheritance is a significant means of transferring wealth from one generation to the next, and therefore increasingly attracts attention from researchers and pol- icy-makers working on intergenerational and multidimensional poverty. How- ever, until now disabled persons have been overlooked in these discussions. This oversight is particularly unfortunate because, as a group, the estimated one bil- lion people with disabilities (some 15% of the world’s population) are among the poorest and most marginalized of the global population. Over the past dec- ade, a small but growing literature has examined the recursive connections between poverty and disability throughout the developing world. In this paper, we argue that disabled individuals are routinely denied inheritance rights in many low-income and middle-income countries, and that this is a significant and largely unrecognized contributor to their indigence. The denial of inheritance is both a social justice issue and a practice that can no longer be overlooked if disabled persons are to be brought into the development mainstream.

Caring for people with intellectual disabilities in poor rural communities in Cambodia : experience from ADD International

CORDIER, Sylvie
October 2014

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This article explores the impact of ADD International’s project in Cambodia, which aimed to support communities to learn more about persons with intellectual disabilities and support them in their daily life. The article has a particular focus on how this work affected carers, the majority of whom are women

Gender & Development, 22:3

Health-related rehabilitation and human rights : analyzing States' obligations under the United Nations convention on the rights of persons with disabilities

SKEMPES, Dimitrios
STUCKI, Gerold
BICKENBACH, Jerome
August 2014

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This article analyses States' obligations with respect to rehabilitation of health under the Convention on the Rights of Persons with Disabilities. Based on internationally accepted standards of human rights law interpretation and drawing extensively on current literature from the field of global health policy, the authors identify the range of governments legal obligations regarding health related rehabilitation across several key human right commitment areas, such as equality and nondiscrimination; progressive realization; international cooperation; participation in policymaking processes; the accessibility, availability, acceptability, and quality of rehabilitation services; privacy and confidentiality; and informed decision making and accountability.To support effective implementation of the Convention, governments need to focus their efforts on all these areas and devise appropriate measures to monitor compliance with human rights principles and standards in rehabilitation policy, service delivery, and organization. This study lays the foundations for a rights-based approach to rehabilitation offering a framework that may assist in the evaluation of national rehabilitation strategies, the development of appropriate indicators and the identification of gaps in the implementation of the Convention

Archives of Physical Medicine and Rehabilitation, Volume 96, Issue 1

Social participation of diabetes and ex-leprosy patients in the Netherlands and patient preference for combined self-care groups

DE VRIES, Henry JC
DE GROOT, Roos
VAN BRAKEL, Wim H
August 2014

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This study compared the social constraints of diabetic patients and ex-leprosy patients and investigated combined self-care groups for ex-leprosy patients and diabetic patients. The physical complications and social problems in ex-leprosy and diabetic patients with neuropathy are similar. Despite the fact that diabetic patients preferred disease-specific, homogeneous self-care groups, the authors believe that the option of combined groups is a promising strategy. Therefore, further research is warranted into the acceptance and impact of self-care groups as a strategy to reduce social constraints by diseases causing neuropathy 

Frontiers in Medicine, Vol 1

Moving from the margins: mainstreaming persons with disabilities in Pakistan

SURESH, Tricia
August 2014

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 This report examines the challenges, opportunities and policy issues affecting persons with disabilities in Pakistan. "The report makes strong recommendations for policymakers as well as the corporate sector and others. It advocates a comprehensive strategy through a gradual approach that includes policy intervention, awareness-raising and investment. The attitudinal, social and physical barriers faced by persons with disabilities in Pakistan also need to be challenged."

Factors that influence doctors in the assessment of applicants for disability grant

TUMBO, JM
2014

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Background: A disability grant is the financial assistance given by the government to South African citizens and bona fide refugees who have debility that results in inability to work. Doctors in state hospitals and clinics are tasked with the duty of assessing applicants for this grant. Ideally, the assessment is done by an institutional committee consisting of a doctor, physiotherapist, social worker, occupational therapist and specialised nurses. However, this is not always the case because of a shortage of personnel, particularly in rural areas. A lack of clear guidelines for the assessment process has led to confusion and differences in the outcomes. This poses major problems for the doctors, as well as the applicants, who often are dependent on the grant for survival. The aim of this study was to explore the factors that influence doctors in the assessment of applicants for a disability grant.

 

Methods: A qualitative study using free attitude interviews was conducted amongst doctors involved in the assessment process in Limpopo province. Content analysis was used to identify themes from the interviews.

 

Results: The assessment process was not entirely objective and was influenced by subjective factors. These included the mood of the doctors, emotions such as anger and sympathy, and feelings of desperation. Perceptions by the doctors regarding abuse of the system, abuse of the grant, the inappropriateness of the task, lack of clear guidelines and the usefulness of the committees were important in decision making. The doctors’ personal life experiences were a major determinant of the outcome of the application.

 

Conclusion: The assessment of applicants for a disability grant is a subjective and emotional task. There is need for policy makers to appreciate the difficulties inherent in the current medicalised process. Demedicalisation of certain aspects of disability assessment and other social needs that doctors do not view as a purely clinical functions is necessary. In addition, there is a need for clear, uniform policy on and guidelines for the management of the grant, the role of the doctor has to be defined, healthcare practitioners must be trained in disability assessment, institutional committees should be established and intersectoral initiatives should be encouraged to address issues of poverty and dependence.

Perceived Needs Related to Social Participation of People with Leprosy-related Disabilities and other People with Disabilities in Cambodia: A Qualitative Study

HEEREN, Marie-Julie J
KY, Lai
VAN BRAKEL, Wim H
2014

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Purpose: The objective of this study was to describe the similarities and differences in perceived needs related to social participation of persons with leprosy-related disabilities and other persons with disabilities in Cambodia, and to suggest key interventions to promote participation in the community.

 

Methods: A cross-sectional study was conducted. People with leprosy-related disabilities were selected at home during field visits or at the rehabilitation centre for people with leprosy in Phnom Penh. People with locomotor disabilities were selected at the rehabilitation centre for persons with disabilities in Phnom Penh and Prey Veng. A pilot-tested, face-to-face semi-structured interview, with open and closed questions, and focus group discussions were used to investigate the perceived needs related to social and economic participation in the community. The interview was based on the International Classification of Functioning, Disability and Health (ICF) model of the WHO.

 

Results: Both groups of people with disabilities struggle with social exclusion in society. People with leprosy-related disabilities, in particular, live below the poverty line of US$ 0.5 per day. Most of the participants lived in rural areas. Participants raised the need for enhanced self-esteem and help in finding jobs. To overcome the difficulty in finding employment, they felt vocational training and microcredit to start businesses, were required.  

 

Conclusions: The study found that both groups of people with disabilities have similar needs to improve participation in social and economic life. Rehabilitation centres provide vocational training and microcredit. Self-help groups have also proven effective in reaching poor people with disabilities in rural areas and improving social participation. The authors suggest that it is best to form multi-disability self-help groups to empower all the affected people and help fight poverty. 

 

 

Disability, CBR & Inclusive Development Journal, Vol 25, No 3

Applied research on disability in Africa : general mapping

INTERNATIONAL FOUNDATION OF APPLIED DISABILITY RESEARCH (FIRAH)
2014

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“The goal of this literary review is to report on existing knowledge about applied research on the African continent, regarding the living conditions of people with disabilities, poverty, violence and sexual abuse especially regarding children and women with disabilities, community-based rehabilitation and employment”

Youth with disabilities in law and civil society: Exclusion and inclusion in public policy and NGO networks in Cambodia and Indonesia

MEYERS, Stephen
KARR, Valerie
PINEDA, Victor
2014

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Youth with disabilities, as a subgroup of both persons with disabilities and of youth, are often left out of both legislation and advocacy networks. One step towards addressing the needs of youth with disabilities is to look at their inclusion in both the law and civil society in various national contexts. This article, which is descriptive in nature, presents research findings from an analysis of public policy and legislation and qualitative data drawn from interviews, focus group discussions, and site visits conducted on civil society organizations working in Phnom Penh, Cambodia and Jakarta, Indonesia. Data was collected during two separate research visits in the Spring and Summer of 2011 as a part of a larger study measuring youth empowerment. Key findings indicate that youth with disabilities are underrepresented in both mainstream youth and mainstream disability advocacy organizations and networks and are rarely mentioned in either youth or disability laws. This has left young women and men with disabilities in a particularly vulnerable place, often without the means of advancing their interests nor the specification of how new rights or public initiatives should address their transition to adulthood.

 

Disability and the Global South (DGS), 2014, Vol. 1 No. 1

Perceptions about Barriers to Sexual and Reproductive Health Information and Services among Deaf People in Ghana

MPRAH, W K
2013

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Purpose: This study aimed to provide insights into factors that influence the acquisition, accessibility, and utilisation of Sexual and Reproductive Health (SRH) information and services by deaf people who communicate using Ghanaian Sign Language (GSL).

 

Method: The study explored deaf people’s perceptions about barriers to SRH information and services in Ghana. There were 26 participants in 3 focus groups: 10 executives of Ghana National Association of the Deaf (GNAD), 7 deaf adult males and 9 deaf adult females. A key informant, who had experience in working with deaf people, was also interviewed. Review of documents and observations helped to clarify data gathered from the focus groups.

 

Results: Study findings indicated that when accessing SRH information and services in Ghana, deaf people encounter numerous barriers such as problems with communication, ignorance about deafness, negative attitudes, and services that are not customised to their needs.

 

Conclusion: If it is to succeed, any SRH programme for the deaf community must make the eradication of communication barriers a priority, since communication is fundamental to all challenges that deaf people encounter.

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