The way women experience disabilities and especially disabilities related to leprosy in rural areas in South Sulawesi, Indonesia

Many leprosy affected persons who have been cured long ago, may have disability and have to cope with problems caused by stigmatization. Rehabilitation requires information about personal and environmental factors, the magnitude of the need and the types of disability in the area. To answer these questions, a rapid disability appraisal (RDA) method was developed. The RDA is a toolkit of (existing) questionnaires for planning, monitoring and evaluation of rehabilitation services. As part of a validation study of this toolkit, qualitative data were also collected. This paper reports on the latter and focuses primarily on how women in rural areas in South Sulawesi cope with disabilities and especially disabilities related to leprosy. The results showed that most women with disabilities were not able to contribute to the family income, but did perform household activities. In general, the women were able to take care of themselves. The community treated people with disabilities not caused by leprosy well, respected them and did not avoid them. Women with leprosy encountered many more problems in daily life, mainly due to stigma. Not only did people avoid the person affected by leprosy, but also their family. Even leprosy-affected persons themselves avoided other people. A leprosy-affected person was not accepted as a marriage partner for a healthy person. All women with disabilities gave evidence of the existence of stigma, resulting in social participation restrictions. Especially women affected by leprosy were stigmatised by relatives and community members. They also suffered from self-stigma. Disabilities and stigma resulted in lower education, income and marriage prospects for all women. Action is needed to change beliefs and attitudes regarding leprosy and disability and to improve access to appropriate rehabilitation services.