“What is a city, but the People”

-William Shakespeare

Building more participatory systems is crucial to exercising the right to the city. The previous blog narrated the participatory approach stages involving the Expert Roundtable and City Stakeholders' Consultation of the GUIDE initiative. This blog will focus on the following stages of the participatory approach of the pilot where the government and the citizenry, here persons with disabilities (PwDs), were involved in the data collection process.

As per Crenshaw, "Intersectionality is a metaphor for understanding the ways that multiple forms of inequality or disadvantage sometimes compound themselves and create obstacles that often are not understood among conventional ways of thinking." Factors such as caste, gender, age, economic status and ethnicity among others affect how PwDs experience disability. Hence, the methodology devised not only included participation of diverse subsets of diversities that exist within the broader disability demographic but also data collection on their needs.

To gain insights into the demand side, PwDs were engaged in the data collection stage and for collaborative designing of the household survey. Conversely, to comprehend the supply-side situation and address challenges in service delivery specifically for PwDs, select government officials were engaged through informant interviews. These activities were pivotal in collecting both quantitative and qualitative data under the initiative.

Focus Group Discussions (FGDs)

For the qualitative data collection, 31 PwDs were engaged through FGDs. Three FGDs were organised with different groups of PwDs. The first one was held with men with disabilities, the second with women with disabilities, and the third one with a mixed group of PwDs including both men and women. All the groups had PwDs with different disabilities and varying age groups. These FGDs intended to identify the challenges faced by PwDs in accessing basic and essential urban services and map them sectorally.

Informant Interviews

Simultaneously informant interviews were being conducted with the government officials involved in the delivery of basic and disability-specific services in Varanasi. This involved 4 Key Informant Interviews (KII) and 4 Personal Interviews (PI). The KIIs were conducted with - Varanasi District Magistrate, District Disability Empowerment Officer, Varanasi Station Director (railways), and Regional Employment Officer. The PIs were conducted with - the Basic Education Officer, the Chief General Manager of Varanasi Smart City Limited, the Deputy District Election Officer, and the Regional Manager of Uttar Pradesh State Road Transport Corporation (UPSRTC). The intent was to investigate the supply-side scenario of services, specifically for persons with disabilities.

Co-Design Workshop

The findings from these interviews and the FGDs, in turn, led to the drafting of a sound and comprehensive household survey questionnaire with 90 questions. Furthermore, to test the feasibility of this questionnaire, 16 PwDs were consulted in the next step i.e. the Co-Design workshop. The participants group was gender balanced and was representative of varied disability types; i.e., Cerebral Palsy, Hearing Impairment, Visual Impairment, Locomotor Disability, and Orthopaedic Disability. The household survey questionnaire was presented to these participants. Each participant voted for every question one by one on whether the question should be included in the survey or not. The participants voted against 12 questions being included in the survey. These questions were revisited by the participants, with discussions and modifications to the questions and options, the questionnaire was finalised consisting of 89 questions.

These activities were interconnected and contributed to several important outcomes:

1. Preliminary identification of priority sectors: The FGDs played a crucial role in identifying the first set of priority sectors, namely  Education, Health, Mobility, Assistive Devices and Technology, Housing, Recreation & Tourism, WASH (Water, Sanitation, and Hygiene), Civil Participation & Governance, Information & Communications Technology. Through discussions with persons with disabilities (PwDs) from different groups, challenges faced in accessing basic urban services were mapped sectorally, highlighting the sectors requiring immediate attention.

2. Services availed by persons with disabilities: The FGDs provided insights into the city-level services accessed by PwDs and the difficulties they encountered in accessing them. By engaging PwDs in discussions, the project gained an understanding of the specific needs, wants, and aspirations of this demographic, as well as their sector-wise rating of services. This information served as a benchmark for the development of the  Disability Inclusive Scorecard.

3. Information on existing and planned services: Informant interviews conducted with government officials involved in service delivery offered on-the-ground and in-depth knowledge of the services created for persons with disabilities. These interviews shed light on the formulation, implementation, operational activities, and challenges faced in delivering services. The insights gained helped understand the existing systems and identify gaps in service delivery. They also captured the recommendations and suggestions made by the officials to improve service delivery and make it more inclusive.

4. Identification of gaps in service delivery: The combined findings from the FGDs and informant interviews revealed gaps in service delivery from both the service providers i.e. government and the service users i.e. PwDs. By understanding the challenges faced by PwDs and the perspectives of government officials, blank spots in service design and delivery as well as the suggested solutions were mapped.

5. Drafting the household survey questionnaire: The finalisation of the household survey questionnaire involved categorising the questions into different sections. These sections encompassed various aspects, including basic details of the individuals, as well as the services availed by the respondents. The questionnaire was formulated to capture a comprehensive understanding of the demographic and their utilisation of services at both the individual and household levels.

Overall, these activities were interconnected and built upon each other, allowing for a holistic understanding of the needs, challenges, and perspectives of PwDs. The participatory data collection approach ensured that the voices and experiences of PwDs were integrated into the project's methodology, leading to more accurate and inclusive data analysis. By putting PwDs at the forefront of participatory data systems, this project took a significant step towards creating a multi-stakeholder participatory approach to build inclusive urban environments that meet the diverse needs of all citizens. In the next blog, we will explore the final piece of the puzzle in the participatory data collection process i.e. the household survey, and how we made sense of the data to create a more informed landscape of the city from the lens of disability.

Author: Monica Thakur, Program Associate, Inclusive Cities Centre, NIUA