Notes from the Field: A reflection on doing a study involving people with disability
It goes without saying that creating an inclusive platform cannot be done in isolation. From the stories in our previous blog, we know there were more experiences from parents and caretakers of children with disability, as well as communities and organizations of people with disability that we can learn from to design the AksesInklusif platform. These are our reflections on the process of how we conducted this study involving people with disability.
To supplement the literature review and data collected by the Data Innovation and Policy team, we acknowledged the need to actively involve people with disability and other relevant stakeholders to understand their needs and strengthen the design of the AksesInklusif platform we aimed to build. To do this, we visited three cities in Western and Eastern Indonesia and conducted a design sprint workshop to inform our platform design.
We used several techniques such as focus group discussions, in-depth interviews, field observations, and visits to schools, local communities and government agencies to form a deeper understanding of the situation for people with disability and for those who care for children with disability. This information served to help us understand their experiences, the types of information they need to fulfill their needs, and supporting policies that have been implemented by local governments. Understanding the sensitivity of this topic, we knew that we would need to take an approach that differs from our usual practices for these visits, and now that we have returned from the field, we want to share three of our biggest takeaways.
What we learned about doing inclusive qualitative research involving people with disability
Being mindful and flexible when designing research instruments and organizing workshops
From the project’s kickoff, we understood that the approach for gathering data through fieldwork and workshops required greater sensitivity and flexibility. Researching issues related to disabilities — especially when it is still a sensitive topic for many across the country — can potentially cause participants distress as they might have to recall receiving their child’s diagnosis, the emotional toll they underwent, and other challenges they might have encountered trying to obtain proper care. For this reason, there was a need to be more mindful of the way we designed the interview questions and sessions.
To begin, we learned about the appropriate terms to be used when talking about disability, which is detrimental when working on the issue. We also learned how communities and organizations working for people with disability have different perceptions about certain terms and use of language. As a very simple example, some found abbreviating the term “persons with disabilities” to be insensitive while others did not feel the same way. To deal with these differences, we closely observed the dynamics at the start of each visit and adjusted our language according to what they used.
We then consulted key stakeholders — the parents and caretakers, and disability organizations and community — about our approach, interview questions and techniques, but we also learned of their experiences and practices. What we learned through these exchanges challenged our initial assumptions.
This also led to how we decided to opt for focus group discussions, as they allow us to obtain in-depth information within a shorter time frame compared to in-depth interviews. Our expectation was that a group discussion would also put less emotional and mental stress on the parents and caretakers whom we engage with; however, that did not turn out to be the case, and the extent of the emotional toll experienced during the session was higher than expected. Based on the experience from the first group discussion, we shifted our strategy to in-depth interviews to create a more personal and calming environment for the participants.
Involving the community and organizations working for people with disability throughout the process is essential
“Nothing about us without us” is a motto used in advocating for disability rights by communities and groups of people with disability. It essentially means that nothing should be decided or done for a community without the participation of those who will be directly impacted. This motto informed our level of engagement with key stakeholders throughout the project, as we knew that without their participation, the information we gathered would be less meaningful.
In Indonesia, local communities and organizations of people with disability play a significant role in advocacy and support. They are at the forefront of taking initiative in collecting data on people with disability in the midst of limited data availability at the national level, and helping local and national governments close the disability data gap. They also provide peer support and resources for their members, such as through sharing information on therapy facilities and inclusive schools. Some organizations we spoke to have programs and activities to empower their members and raise awareness about disability issues, and we also learned how local communities and organizations connect across the country as part of their efforts to enhance their collective impact.
Prior to our visits, we reached out to these organizations to better understand the population and context, but representatives were also present during our interviews and focus groups discussions, which helped several respondents be more open and feel safer during the sessions. After we generated insights from the visits, these organizations also participated in a “design sprint” or co-design workshop to collectively give us ideas on how to design the platform alongside representatives of parents and caretakers of children with disabilities and other key stakeholders.
Taking care of the emotional safety and wellbeing of researchers
When doing a study on disability, there is a need to be more mindful of how we interact with those we speak to; however, as it is a topic that covers mentally and emotionally heavy issues, it is also important to be mindful of the psychological well-being of the research team.
During the focus group discussions, in-depth interviews and observations, many of our participants recalled their difficult personal experiences with finding information and seeing their child’s growth and development regress. Parents and caretakers saw these sessions as a safe space to tell their stories and share their pain points with others who are in similar positions as them. As a result, we gathered rich context and insights from the process, but there was also a heavy emotional toll that this process had on the researchers. We recognized the need to find balance so as not to become overwhelmed by the information and so we tried to allocate fewer sessions in a day, had regular emotional check-ins within the team and cleared our schedule at the end of each day to properly unwind. Our trip to Ternate was the first time our team members had visited the area, and setting aside time to unwind at the end of a challenging day was not only important for our mental health but it also gave us a chance to partake in the cultural and culinary sights the island has to offer.
In our regional expansion as the Global Pulse Asia Pacific Hub, we will continue to work on gender equality, disability, and social inclusion issues, and we hope these fieldwork reflections can serve to inform us on how to continuously improve our work and approaches.
Authors: Rizqi Ashfina (Research Officer), Andini Kamayana (Communication Manager), and Aaron Situmorang (Social Systems Lead)
The Leave No One Behind (LNOB) project looks at data ON and data FOR people with disability and is a collaborative effort initiated by multiple stakeholders. The project focuses on components under the mandate to ‘Leave No One Behind’ and is an opportunity to respond to commitments within the UN Data Strategy to improve the collective use of data within and between UN agencies in Indonesia to deliver better results. We would like to thank all stakeholders who have contributed to this project for their continued support and collaboration, with special thanks to UN Global Pulse Finland for the funding support.
Leaving No One Behind (LNOB) project team members: Faizal Thamrin (Data Innovation and Policy Lead), Rajius Idzalika (Principal Data Scientist), Rheza Muztahid (Principal Data Engineer), Robbi Nugraha (Web Application Engineer), Aaron Situmorang (Social Systems Lead), Rizqi Ashfina (Research Officer), Desi Vicianna (former Government Partnership Coordinator), Andini Kamayana (Communication Manager), Alfian Maulana Latief (Multimedia Associate), Muhammad Fazri Nahar (Data Analyst and Visualization Intern), Ramzy Syafiq (Data Analyst and Visualization Intern), Rahma Fairuz Rania (Data Analyst and Visualization Intern)
UN Global Pulse Asia Pacific is grateful for the generous support from the Government of Indonesia and the Government of Australia.
