All Blog Data Diving to Improve Disability Inclusion

Data Diving to Improve Disability Inclusion

August 08, 2023 | Blog | By Anyssa Satharina Maulida (Saraswati), Andrew Thornley (Saraswati), Rajius Idzalika (Global Pulse Asia Pacific), Andini Kamayana (Global Pulse Asia Pac

Participants of Research Dive 10 / Photo: Saraswati


The climate for acknowledging and respecting the rights of persons with disabilities has been changing for the better in Indonesia. Within the past twelve years, Indonesia has ratified the Convention on the Rights for Persons with Disabilities, passed a Law on Persons with Disabilities, created a National Disabilities Commission and even now has a Persons with Disabilities National Action Plan. 


An embrace of the Sustainable Development Goals and spirit of Leave No-One Behind has helped to further strengthen collaborations with Indonesian and international development partners to promote disability inclusion.


However, real action in promotion and protection of disability rights requires an understanding of not only whose rights are to be addressed but also the specific needs, circumstances and experiences of each individual. 


Indeed, if data is the new oil, then a routine and well-networked flow of premium-grade data accessible to all is required to inform our understanding. The reality is that we are currently operating with a few unconnected sources intermittently producing medium-grade data and much of this on a proprietary basis.


Over the past two months, Pulse Lab Jakarta and Saraswati, in collaboration with CBM Global Disability Inclusion and Data Science Indonesia, have been convening online and offline forums with over 150 experts to explore key questions relating to disability data. These include: what data is most relevant on and for persons with disability? How to improve interoperability and integration of disability data? What are the preferred paradigms in defining disability? And how to overcome issues deriving from stigmatization and self-identification in data collection?


This initiative included a Research Dive which was held in Jakarta from 12-15 June 2023. The Research Dive aimed to bring together data-centric and subject matter research experts around the following question: can we explore data sets and new ways of data integration towards improving opportunities and livelihoods of persons with disabilities?


Research Dive Documentation: Saraswati Team


Research Dives involve long hours in small teams. Eleven participants from academia, government, international organizations, the private sector and civil society worked in three teams, each team with one advisor wrestling with one topic–with topics chosen in advance based on national significance and data availability.


The findings from the Research Dive have been consolidated in a comprehensive technical report which can be found here. Apart from the insights presented in the technical report, several behind-the-scenes elements also merit attention and discussion.


Foremost is the shared perspective among our three research teams on the integral relationship between disability and social protection. This shared view underscores the centrality of social security in any discussion concerning disability issues. Consequently, any attempt to gather data on disability without collecting information on associated social security measures presents an incomplete picture.


Another challenge was the considerable limitations intrinsic to the field of disability data. The lack of publicly available data on and for disability issues became strikingly evident as our researchers delved deeper into the datasets. Although there was ample data provided for initial exploration, it's worth noting that it isn't publicly accessible—PLJ’s innovative data partnership strategies and formidable engineering capabilities made the data available for the research activity. Regrettably, the current disability data ecosystem falls short in supporting robust research into disability issues to achieve more significant social impact, particularly when relying solely on publicly accessible data.


As an example, obtaining more comprehensive information on available essential services for persons with disabilities, such as inclusive schools, expertise in child development and early diagnosis, can significantly enhance research findings. Unfortunately, the information is not publicly accessible and poses substantial access barriers for independent researchers lacking specific agreements with institutions that do have access. Microdata, a primary source for understanding disability and social protection distribution, also remains off-limits to many researchers, functioning more as a private commodity than a public asset.


Furthermore, our researchers concluded that the disability prevalence captured in Susenas, or the National Socio-Economic Survey, appears to be underestimated. The finding is not entirely surprising given that the design of Susenas aims to capture general socio-economic profiles with observations primarily at the household level. Consequently, even with weight adjustments, Susenas' current form may not accurately depict disability figures. The insight prompts intriguing research questions on developing methodologies to surmount such limitations and to enhance the quality of disability prevalence data.


Lastly, there were challenges pertaining to employment data for persons with disabilities. Initially, the intention was to include a data use case showcasing employment opportunities for persons with disabilities as it is an integral part of the complete life cycle we're researching; however, due to limitations in data and research interest in this area, this aspect was ultimately withdrawn from the research process. Employment is essential for individuals with disabilities as it fosters productivity and facilitates active participation in society. The challenges to conducting research within the field suggests that employment aspects trail behind other dimensions of life for persons with disabilities in Indonesia. We hope to revisit and address such a critical issue in the future.


The Research Dive on Inclusive Development and Humanitarian Responses marks a positive step forward in promoting disability rights and inclusivity. However, challenges in data accessibility and quality hinder comprehensive research and analysis of disability issues. The limited availability of publicly accessible data, underestimations in disability prevalence, and gaps in understanding essential services and employment opportunities for persons with disabilities necessitate innovative methodologies and enhanced research focus. 


As the Lab transforms into a regional Asia Pacific hub, we continue to explore ways to make our work more inclusive and accessible, including the Research Dives. This event included researchers who live with disability, and for the first time we streamed the final presentations with sign language interpretation to improve outreach. We were also lucky to get our in-house coffee provided by Sunyi, a cafe operated by persons with disabilities. By leveraging shared perspectives and dedication to fostering meaningful change, we aim to contribute to a more equitable future for persons with disabilities in Indonesia.