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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.

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.

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