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Activity Limitation of People Affected by Leprosy in an Endemic District in West Bengal, India

Govindharaj, Pitchaimani
Srinivasan, Sampathkumar
Darlong, Joydeepa
2020

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Purpose: This study aimed to assess the level of activity limitation, and the factors associated with it, among people affected by leprosy who were reporting at a leprosy referral centre of Purulia, in West Bengal state, India.

 

Method: A cross-sectional study was conducted among 358 individuals affected by leprosy. Persons recruited for this study were above 18 years of age, married, and had been diagnosed with leprosy for at least 1 year at the time of the interview. A semi-structured questionnaire was used to gather information about the respondents’ socio-economic and disease status. The Screening of Activity Limitation and Safety Awareness (SALSA) Scale was used to measure activity limitation.

 

Results: Of the 358 respondents, 59% were male, 60% were between 18 and 45 years of age, and 42% were illiterate. About 144 or 40% of the respondents had Grade 2 disability and 60% had disease duration of more than 3 years. There were 229 individuals (64%) who had no limitation in activities, 103 (29%) had mild limitation and 26 (7%) had moderate to severe limitation in activities. There is a significant association between gender, age, occupation, physical disability and disease duration with activity limitation.

 

Conclusion: It appears that limitations in activities among persons affected by leprosy are associated with being a woman, ahousewife, an aged person, and with longer disease duration. The physical disability was intrinsically associated with limitation in activities.

Marriages among people with disabilities in 19th-century Sweden: marital age and spouse’s characteristics

VIKSTRÖM, Lotta
HAAGE, Helena
HÄGGSTRÖM LUNDEVALLER, Erling
2020

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While marrying was an expected event in 19th-century Western society and has been subject to much historical research, there are few studies on how disabilities influenced people’s marriage patterns and spouse selection. The aim of this analysis is to contribute clarification on this issue by examining with whom disabled men and women married and the marital age and socio-demographic characteristics of them and their spouses. In total, 188 disabled individuals born in the first half of the 19th century and who married in the Sundsvall region, Sweden, are studied. The results reveal that disabled men and women did not marry each other, and they entered into marriage at a slightly higher age than the average, although there was usually no marked age gap between them and their spouse. Endogamous patterns were primarily found regarding the socio-spatial background of the two spouses. This analysis is one of the few studies identifying the mar- riages among a comparatively large number of disabled people using demographic data. Their participation in the partner pool highlight their agency historically and emphasize that disability did not lead to distance from social life in past society.

 

 

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Sport coaches as policy actors: an investigation of the interpretation and enactment of disability and inclusion policy in swimming in Victoria Australia

HAMMOND, Andrew M
PENNEY, Dawn
JEANES, Ruth
2019

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This paper draws upon education policy sociology, and sport coaching literature, in critically examining sport coaches as policy actors. Stephen Ball and colleagues’ conceptualisation of different policy actor positions and roles provided the framework for research that investigated how eight professional swimming coaches in Victoria, Australia, interpreted and enacted disability and inclusion policy. A discourse analysis of semi-structured interviews with the eight coaches reveals the complexities associated with how and why different coaches interpret and enact disability and inclusion policy imperatives in different ways in their specific club contexts. Data are presented that shows coaches adopting multiple and hybrid policy actor positions and roles as disability and inclusion policy was interpreted, translated and ultimately, expressed as pedagogic rules and practices. Our discussion brings to the fore questions about power, agency and control in coaching, while highlighting both limits and possibilities for the enactment of inclusive disability sport policies by swimming coaches working in Victoria, Australia. In conclusion we suggest that this research illustrates that coaches are capable of enacting social change, and have some agency to do so, but at the same time appear constrained by established discourses that shape policy and give important direction to pedagogic practice. We advocate that further in-depth research is required into the coaching policy-practice nexus, particularly as it relates to the advancement of equity and inclusion.

Success in Africa: People with disabilities share their stories

SHAKESPEARE, Tom
MUGEERE, Anthony
NYARIKI, Emily
SIMBAYA, Joseph
2019

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Background: Whereas most narratives of disability in sub-Saharan Africa stress barriers and exclusion, Africans with disabilities appear to show resilience and some appear to achieve success. In order to promote inclusion in development efforts, there is a need to challenge narratives of failure.

 

Objectives: To gather life histories of people with disabilities in three sub-Saharan African countries (Kenya, Uganda and Sierra Leone) who have achieved economic success in their lives and to analyse factors that explain how this success has been achieved.

 

Methods: Qualitative research study of economic success involving life history interviews with 105 participants with disabilities from both urban and rural settings recruited through disabled people’s organisations and non-governmental organisation partners, framework analysis of transcripts to chart success and success factors.

 

Results: Participants had faced barriers in education, employment and family life. They had largely surmounted these barriers to achieve success on an equal basis with others. They were working in private and public sectors and were self-employed farmers, shopkeepers and craftspeople.

 

Conclusion: The findings of this study suggest that, given the right support, disabled people can achieve economic success, with the implication being that investment in education or training of disabled people can be productive and should be part of overall development efforts for economic reasons, not solely to achieve social justice goals.

 

 

African Journal of Disability, Vol 8, 2019

Governmentality of disability in the context of lifelong learning in European Union policy

KAUPPILA, Aarno
KINNARI, Heikki
NIEMI, Anna-Maija
2018

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The possibility to participate in education and lifelong learning has been introduced in EU disability policy in recent decades as one of the key means to improve the socioeconomic position of disabled persons. Simultaneously, lifelong learning has been developed as the defining concept of EU education policy to increase social cohesion and economic competitiveness. However, the education, employment rate and socioeconomic status of disabled persons have remained far below the EU average. In this article, we theo- rize governmentality to explore (1) how EU lifelong learning and disability policy discourses constitute and govern disabled persons and (2) how disabled persons are positioned in the policy dis- courses. The data consist of the most relevant EU policy documents concerning lifelong learning and disability policy in the twenty-first century. We argue that the policies constitute and govern disabled persons as a group who do not fulfil the premises set for the lifelong learner, and that consequently, policy dis- courses marginalize disabled persons instead.

Analysing disability policy in Namibia: An occupational justice perspective

CHICHAYA, Tongai F.
JOUBERT, Robin W.E.
MCCOLL, Mary Ann
2018

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Background: The Namibian disability policy of 1997 has not been reviewed for about 20 years, which has raised concerns with persons with disabilities and stakeholders in the fields of disability and rehabilitation. In March 2017, the government publicised its intention to review the policy. Thus, this study’s purpose was to generate evidence that can contribute to the development of a more current disability policy that will promote occupational justice.

 

Objectives: The aim of the study was to develop an alternative disability policy option for Namibia and to present outcomes and trade-offs using a policy analysis approach while applying the occupational justice framework to gather evidence.

 

Method: A qualitative research design and Bardach’s eightfold path approach to policy analysis were used. Critical disability theory provided the theoretical framework. The occupational justice framework was the conceptual framework for the study. Evidence from preceding phases of this study and appropriate literature was utilised to construct possible disability policy alternatives in Namibia, set evaluative criteria, project outcomes and confront trade-offs.

 

Results: Three main disability policy alternatives emerged: access policy, support policy and universal coverage policy. Access policy had the fewest trade-offs, and the support policy had the most trade-offs in the Namibian context. Access policy was projected to foster occupational participation among persons with disabilities.

 

Conclusion: Results have implications for selecting disability policy alternatives that promote occupational participation and justice among persons with disabilities in Namibia. Furthermore, the study has implications for advancing the practice of occupational justice in disability policy formulation.

Rituals of knowing: rejection and relation in disability theology and Meister Eckhart

SMITH, Daniel G W
2017

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One of the most powerful claims of disability theology is that the rejection of persons with disabilities somehow correlates with a rejection of God. This ‘correlative rejection’ is, however, frequently just stated rather than explored in detail, something this article therefore seeks to remedy by examining one example of the correlative rejection that draws together the ethical concerns of theologians writing on intellectual disability with Meister Eckhart’s teaching on the human relationship with God. Here, the correla- tive rejection is exposed as an inevitable result of the narrow emphasis on autonomy and rationality in human self-perception which shape the habituated, even ritualised ways that we try to know persons with intellectual disabilities and God. By contrast, truly knowing and relating to persons with intellectual disabilities, God, and finally also ourselves, relies on a reconciliation with the dependence, vulnerability, and non-rational forms of exchange that a narrow attachment to autonomy and rationality seems directly to occlude. The correlative rejection thus signals both a practical and epistemological problem which results from how we view ourselves and how we subsequently relate to and try to know others, the harmful effects of which are both ethical and spiritual.

Access to health care in an age of austerity: disabled people’s unmet needs in Greece

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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Since late 2009, Greece has been dealing with the effects of a debt crisis. The neoliberal principles embedded in the three structural adjustment programmes that the country accepted have required radical cuts in health care funding, which in turn have led to widening inequalities in health. This article focuses on access to health care for people with disabilities in Greece in the context of these structural adjustments. We investigate possible differences in unmet health care needs between people with and without disabilities, using de-identified cross-sectional data from the European Health Interview Survey. The sample included 5400 community- dwelling men and women aged 15 years and over. The results of the logistic regressions showed that people with disabilities report higher unmet health care needs, with cost, transportation, and long waiting lists being significant barriers; experience of all barriers was positively associated with low socio- economic status. These findings suggest that a section of the population who may have higher health care needs face greater barriers in accessing services. Austerity policies impact on access to health care in both direct and indirect ways, producing long-term disadvantage for disabled people. Social policies and comprehensive anti-discrimination legislation might help to address some of the barriers this population faces.

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.

Inequalities in access to health care for people with disabilities in Chile: the limits of universal health coverage

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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We analysed cross-sectional data collected as part of the National Socioeconomic Characterisation Survey (2013) in Chile, in order to explore if there are differences in access to health care between adult Chileans with and without disability. The study included 7459 Chilean adults with disability and 68,695 people without disability. Logistic regressions were performed in order to determine the adjusted odds ratios for the associated variables. We found that despite universal health coverage, Chileans with disabilities are more likely to report worse access to health care, even when controlling for socio-economic and demographic variables, including age, gender and income. Specifically, they are more likely to face greater difficulty arriving at a health facility, obtaining a doctor’s appointment, being attended to in a health facility, paying for treatment due to cost, and obtaining necessary medicine. Both people with and without disability are more likely to face difficulties in accessing health services if they are affiliated with the public health provider, an indication of the economic factors at play in accessing health care. This study shows that universal health coverage does not always lead to accessibility of health services and underlines the disadvantaged position of disabled people in Chile in accessing health services. While efforts have been made recently to improve equity in health care access, disability in Chile poses an additional burden on people’s access to health care, emphasising the necessity for policy to address this perpetual cycle of disadvantage for disabled people.

An examination of violence practiced against disabled Brazilians in relation to sustainable development

KIRAKOSYAN, Lyusyena
October 2014

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Although there are no national data and statistics regarding violence against disabled citizens in Brazil, findings from a number of small-scale research studies suggest that it is a problem of considerable magnitude. This article draws on the existing literature on violence and oppression, empirical studies on violence against disabled people in Brazil and interviews with a sample of disabled Brazilians to argue that the most prevalent forms of violence in the nation are subtle and concealed forms of oppression that reproduce discriminatory power structures in Brazilian society. Such power structures prevent the developing world in general and Brazil in particular from securing democratic and sustainable development in the post-2015 era, when disadvantaged people must be at the center. The analysis is organized in three parts. First, I outline briefly the main issues in defining impairment, disability and violence, since these represent political choices that shape policy decisions. Second, I analyze the forms of violence that affect disabled Brazilians and the relationships and institutions that create and sustain them. Third, I describe and evaluate the government's key current strategies aimed at addressing violence against disabled Brazilians. The purpose here is to suggest ways in which violence against disabled Brazilians can be addressed in public policies as a sustainable development issue and thus help close the "gap" between disabled and nondisabled populations to create truly sustainable democratic societies that honor human dignity.

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