Engagement with DPOs and PWD in research Beth Sprunt drawing on the work of the ADRA research teams: Triple Jeopardy, Travelling Together and Rapid Assessment of Disability CBM-Nossal Institute Partnership for Disability Inclusive Development ADDC Practitioners Forum 19 June 2013

Lessons from three research projects: 1.Triple Jeopardy - Gender-based violence and human rights violations experienced by women with disabilities in Cambodia 2.Travelling Together - Disability Inclusive Road Development in Papua New Guinea (addressing access by people with disabilities to road infrastructure and road planning processes in PNG) 3.Rapid Assessment of Disability - An efficient means of measuring the effectiveness of development activities which target or include people with disabilities in Asia and the Pacific - testing a toolkit.

Opportunities of working with DPOs and PWD A chance to build community awareness about rights and about capacity of PWD through role modelling of researchers and opportunity for community to engage with PWD on an intellectual and personal level Builds DPO capacity for future work and skills and knowledge to engage in advocacy and policy processes Can create positive media interest in the research

Opportunities of working with DPOs and PWD (cont) The research products are immediately in the hands of people who most benefit from disseminating the findings and sharing the tools Development of tools (interview and group discussion guides, or surveys) can be well-informed by ensuring the themes/questions are appropriate When products (training packages, surveys, etc) are developed with your PWD researchers, they have a greater chance of being accessible from the outset Increases opportunities for the DPO to network with policy makers ICDDR,B changed employment policy to allow recruitment of people with disabilities onto staff

Good ideas Good investment to spend substantial time sensitising researchers to disability issues as well as to the issues related to the topic (eg. gender, roads, measurement of disability) Allow plenty of time for practice to get used to tools (participatory methods, surveys, group discussions, etc) Ensure methods and time for participatory analysis Allow time and budget for sign language interpreters Recruit PWD researchers as soon into the process as possible so they can be involved in as many processes as possible, eg. ethics applications

Challenges and suggestions Sampling only through DPOs can lead to non- representative sample (need to be aware of who the constituents of the DPO are and where the gaps might be) Including the voices of Deaf people who do not speak sign language and people with intellectual disability, when communicating a large number of quantitative questions (especially in sensitive research where family members are inappropriate as the interpreters) compensating by gathering information through qualitative methods

Challenges and suggestions Be aware of the possibility of stigma within the research team (dont assume everyone feels and acts the same towards the PWD co-researchers as you) Logistics and transport Additional supports for people with different impairments may be required; some research activities wont work so well with researchers with certain impairments unless supports are in place

Travelling Together – PNG – data collectors facilitating community consultation