Key points

• • This chapter disrupts the academy by providing intersectional perspectives on the tensions and strengths of research collaborations with persons with disabilities, based on research in Indonesia.

• • Establishing an equal collaborative relationship can be challenging especially due to the inherent power imbalance with co-researchers. It is important to be aware of and acknowledge this openly, and jointly work together to resolve such issues.

• • The full participation of persons with disabilities should be a key concern throughout all stages of research production. However, limited time and resources, especially for a short-term research project, could be a major constraint in achieving this goal.

• • Reasonable accommodation, accessibility and sharing of research knowledge and practical skills are indispensable to support the participation of persons with disabilities, especially in complex settings such as disaster research.

• • By establishing trust and well-coordinated processes with co-researchers, we can constantly reflect on and improve our methods in conducting research.

Introduction

Persons with disabilities face higher disaster risks, for instance, due to the inaccessibility of disaster preparedness information, evacuation shelter and relief assistance. Structural inequalities also mean that many do not have the resources to cope with a disaster (Twigg et al, 2018). Understanding the experiences of persons with disabilities before, during and after a disaster is important to inform efforts in reducing and managing such risks. Thus, the participation of persons with disabilities in disaster research as experts with lived experience is crucial (Gartrell et al, 2020). However, research focused on the experiences of persons with disabilities in disasters has only emerged in recent decades, significantly later than research on the experiences of other at-risk groups such as children, women, disadvantaged and Indigenous minorities (Stough and Kelman, 2018).

Further, the role of persons with disabilities in disaster research has been limited to being research subjects, that is, where research is done on them rather than by or with them (Ollerton, 2012). Consequently, persons with disabilities are alienated from the research process and have no say in shaping the direction of the research nor benefit from knowledge production (Kitchin, 2000).

For at least three decades, disability scholars have criticised this unequal relationship in research production (Oliver, 1992; Zarb, 1992; Stone and Priestley, 1996) based on the ‘social model of disability’ (see Shakespeare, 2006).