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The lived experience of disability in Timor Leste
Conference presentation   Open access

The lived experience of disability in Timor Leste

Jane Shamrock
USC Research Conference, 2014 (Sunshine Coast, Australia, 14-Jul-2014–18-Jul-2014)
University of the Sunshine Coast
2014
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Abstract

Public Health and Health Services
A pie-chart shows 15% of the population of the world living with disabilities. Another pie chart shows 20% of these people living in developing countries. But such representations don't provide an in-depth understanding of the daily challenges faced by people living with disabilities in poor countries. The aim of this research project was to explore and document some of the experiences of living with disability in Timor Leste. I asked people with disabilities themselves about barriers and enablers which they experience, and I investigated contextual and cultural influences specific to Timor Leste. Additionally, the research sought to develop a model of disability to clarify the experience of disability in Timor Leste. In the past research was frequently carried out 'on' subjects in unequal power relationship. I wanted to involve my participants in the research process and I needed to overcome problems associated with cross-cultural research. To manage these issues I used Photovoice, a qualitative method of data collection based on participant photography. Participants took photographs to illustrate details of their daily lives and these photographs were used in interviews and group discussions. Analysis of interview transcripts, field-notes and photographs have so far revealed a range of experiences of disability; ranging from some people hidden or neglected by ashamed families, to the other end of the spectrum with people with disabilities in public life. I also found that Timor Leste is making notable progress to embed inclusive policies in legislation although attitudinal change is slow. The rich detail from my research will clarify the barriers and enablers experienced by people with disabilities in Timor Leste. Policy-makers, planners and health-service providers will be able to appreciate what should be done to help this significant percentage of the population enjoy opportunities, roles and responsibilities together with the rest of the population.

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