In the first blog of this series, we broadly discussed the need for data, participatory methods, and tools for collecting data to improve the lives of persons with disabilities, and closing the data gaps. Continuing on this theme, this blog will examine global good practices that demonstrate a participatory approach to citizen-centric data collection, especially for persons with disabilities.

Planning and designing policies and interventions for persons with disabilities require collecting accurate and reliable data. Disability data is also integral in achieving SGDs' goals. The World Bank signed the Inclusive Data Charter in July 2018, towards mobilising political support to improve the quality, quantity, availability, and financing of disaggregated data. However, less is known about the integration of disability data in India where 2.21% of the population has what type of disability. This means there are over 26.8 million persons with disabilities. Reiterating from the previous blog, providing basic and essential services to persons with disabilities shall require disaggregated data. As the participatory and citizen-centric approach is central to collecting disaggregated disability data for evidence-based decision- making, it is suggestive to apply in the processes of data collection, strategizing and planning interventions.

While it might sound like a tiresome effort, there are many case examples across the globe which demonstrate the effectiveness of a similar approach and has the potential for adoption. For instance, in Indonesia, cities are often at the forefront of inclusive and innovative social policy to fulfil the rights of persons with disabilities. The efforts of the government and civil societies are constantly backing the lack of relevant up-to-date and accurate data at the local and municipal levels. The collaborative work of Kota Kita and UNESCO has demonstrated an attempt to resolve the issue by developing a participatory data collection methodology for the Disability-Inclusive City Profile. The guideline piloted in Solo city in 2012 describes the importance of involving the end-user or the beneficiaries (here persons with disabilities) in the data collection process. Such efforts made by Yayasan Kota Kita or Our City Foundation, a non-profit organisation motivate citizens to make thoughtful, participate and raise inclusive decisions about the development of their city by facilitating citizen participation and collective action.

Among the most recent and impactful best practices is the South Korean model of contact tracing during MERS and CoViD 19, in which data was used to build a basic infection prevention measure. Foresight and preparedness through data and monitoring helped the authorities in charge to flatten the curve. The model has the ability to see and track the spread of the virus and has eventually saved millions of lives. Even the efforts in the small neighbouring country, Bangladesh, have been commendable to use data in Disaster Risk Reduction (DRR). The country has high-risk areas due to frequent floods, and also has a large PwD population and a lack of individual-level data. As a result, due to poor Disaster Risk Management (DRM) led to an increase in the and a lack of individual-level data, death trolls have been rising in an unprecedented way. The popular Gaibandha Model, household-level data collection took control along with alarming disaster awareness and preparedness with Self Help Groups (SHG) of people with disabilities, Ward Disaster Management Committees, and formal DPSs. This helped mitigate the impact of frequent floods and build resilience within the communities for marginalised groups. Australia uses participatory models to overcome the gap of community participation in data governance developed and tested a participatory methodology to identify approaches to empowering community engagement in data governance in the context of the Monash Net Zero Precinct in Melbourne, Australia. The approach uses design for social innovation to enable a small group of “precinct citizens” to co-design prototypes and multicriteria mapping as a participatory appraisal method to open up and reveal a diversity of perspectives and uncertainties on data governance approaches. This research points toward new ways to conceptualize and design enabling processes of community engagement in data governance and reflects on implementation strategies attuned to the politics of participation to support the embedding of these innovations within specific socio-institutional contexts. Pluralizing approaches to community engagement in urban data governance can be co-created and co-appraised by members of a precinct community.

Another case which displays transformation in disability data collection is by the Kenya Government which used the Washington Group (WG) questionnaire to collect disability data. Be it Citizen Generated Data or OPD-led advocacy, the instruments of participatory data collection these instruments are extremely crucial towards the first step for inclusive data. These case studies offer a great source of models for adopting their actions with proper contextualisation and can be replicated in many geographies and scales. Hence, community-driven data from organizations with a diverse representation of people with disabilities can complement surveys and censuses in official statistics and which in turn help in the formulation of policies specific to the need of these communities. However, while being retrospective of the international global practices, there is a need to be mindful of the geographical diversity, culture and the whole population, especially considering India’s multifaceted nature. There is a need to take inspiration, learn and replicate the global best practices, but this should be done by localizing them with respect to India’s variations and needs.

From the above-mentioned good practices, it is evident that similar practices can be adopted in India to collect citizen-centric disaggregated disability data in ensuring along with basic and essential services and capturing the aspirations of persons with disabilities for future interventions is achievable. The need arises also to design a contextual methodology that is localised and considers specifications of spatial differences and diversity within the vulnerable community/group especially persons with disabilities.In this respect, the National Institute of Urban Affairs (NIUA) in collaboration with the United Nations Educational, Scientific and Cultural Organization (UNESCO) and support from the Ministry of Housing and Urban Affairs through its programme “Building Accessible, Safe & Inclusive Indian Cities” (BASIIC) is undertaking an initiative called the ‘Good Governance for Urban Inclusion Through Data and Empowerment of Persons with Disabilities’ (GUIDE). The initiative piloted in Varanasi seeks to strengthen participatory data systems, on issues related to disability inclusion at the city level, and provide the evidence needed for city planners to design, revise, and adapt plans and programmes to be disability inclusive. GUIDE advocates the importance of local participation i.e., persons with disabilities from the community, local non-government organizations working on the problems concerning persons with disabilities, civil society groups, and sectoral experts from the local government departments among other things.In the following blog, subjective tools shall be reviewed on how these can be utilised to fill gaps in government policies and address community-vulnerable-specific issues.

Source-

1. Disability Data Advocacy Toolkit. (n.d.). the Stakeholder Group of Persons with Disabilities, the International Disability Alliance, Disabled Peoples’ International, and CBM Global Disability Inclusion. Retrieved November 7, 2022, from http://cbm-global.org/wp-content/uploads/2020/11/DisabilityData_advocacytoolkit_accessible.pdf

2. Persons with disabilities and data inclusion – The International Civil Society Centre. (2021, July 7). https://icscentre.org/2021/07/07/persons-with-disabilities-and-data-inclusion/

3. The Washington Group on Disability Statistics. (n.d.). WG Short Set on Functioning (WG-SS). https://www.washingtongroup-disability.com/question-sets/wg-short-set-on-functioning-wg-ss/

4. Leave No One Behind Partnership is making voices heard and count – The International Civil Society Centre. (n.d.). https://icscentre.org/our-work/leave-no-one-behind/

5. Participatory Data Collection Methodology for Disability-Inclusive City Profile https://en.unesco.org/inclusivepolicylab/sites/default/files/filefield_paths/Participatory%20Data%20C ollection%20Kota%20Kita%202018.pdf