Overcoming disabling barriers: Perceptions of people affected by leprosy in four Indonesian self-help groups

This study looks at the impact of self-help groups (SHGs) of people affected by leprosy in Indonesia. SHGs of disabled people in low-income countries are a medium to advance the economic, social and psychological self-empowerment of their members, aiming at improved quality of life. People affected by leprosy still today often form their own impairment-specific SHGs, mainly as a result of conventional segregating approaches in leprosy. The objective of this study was to explore perceptions of people affected by leprosy about their membership in SHGs. Various aspects were explored, namely, interaction with peers, self-care activities, income generation, collective action and issues around single- versus multiimpairment groups. A deeper understanding of these issues, so my hope, may become a small contribution to support the development of SHGs oriented on the actual needs of disabled people. The research for this study was carried out by a team that included three persons affected by leprosy. To equalise the relationship with participants and, with their insight, balance my Western, non-disabled perspective, the three disabled researchers were involved in design, data collection, and analysis of findings. To, ideally, enable participants to openly express their opinions, qualitative data collection methods were applied. Repeated discussions and confirmation of our conclusions may Kerstin Beise 200590736 iii hopefully have contributed to an enhanced awareness of team members and participants. Findings of this study show, that, from the participants’ point of view, SHGs have a positive impact on the empowerment of people affected by leprosy in Indonesia. Of particular importance appears to be selfmanagement and peer to peer support within the groups; equally significant are the facilitation and encouragement provided by DPOs, guiding the members towards increased consciousness about their abilities and rights. When these preconditions are met, SHGs apparently have good prospects of accomplishing a variety of other activities that may lead to favourable economic and psychosocial developments:  Next to income generation –which, expectedly, plays a central role– participants perceived collective action as especially rewarding, supporting empowerment and self-assurance.  Preventing deterioration of impairments through self-care, on the other hand, tends to be neglected and requires motivation, ideally by DPOs.  Inclusion into multi-impairment groups was endorsed by all participants, and thus might constitute the future ideal model of SHGs. A main conclusion of this study, consequently, is the need to understand and acknowledge the importance of genuine participation and self-determination of disabled persons as group members, and of DPOs as facilitators in SHGs.