Lessons India Should Learn From Odisha’s Leprosy Colony on Using Public Spaces To Fight Stigma

By Dr Shubhankar, Arunima, Sree KumaronFeb. 12, 2024in Health and Hygiene

In response to the persistent social stigma faced by leprosy-affected communities, the Rourkela Municipal Corporation and Rourkela Smart City Limited undertook initiatives to create inclusive public spaces, addressing the specific needs of young children and caregivers.

Featured image: Children from the Leprosy Pada and neighbourhood areas enjoying the play spaces during the trial. Photo by: WRI India.

When Jita Mallick, an educator at Durgapur Anganwadi (early childhood learning and development centre) in Rourkela was assigned to work with children in a leprosy colony community, she could see how “the young children from the community continued to bear the brunt of the social stigma despite not being affected by the disease”.

Leprosy colony located on the fringes of Rourkela. Mapping by Arunima Saha/WRI India.  
Source: Google Maps.

India is home to the largest number of leprosy-afflicted people in the world. Currently, there are close to 1,000 leprosy colonies in India, consisting of over three million people. They mostly reside in the fringes of cities and villages. The younger generation from the leprosy families are not affected by the disease anymore. However, the leprosy-affected community continues to face stigmatisation and isolation, which has been normalised due to a lack of awareness that persists to this day.

A temple and an Anganwadi were the only two community spaces in the Leprosy Colony within the Durgapur slum. Mapping by Arunima Saha/WRI India. Source: Google Maps
Unequal distribution of parks in these slums vis-a-vis the affluent colonies in Rourkela. 
Mapping by Arunima Saha/WRI India. Source: Google Maps.

The Durgapur Leprosy Colony lacked a dedicated play area for young children. “There is no play space in the community. Children play in spaces full of mud and stagnant water. Sometimes it leads to infections,” rues Dullamani Pradha, mother of a six-year-old.

The young children and caregivers’ range of mobility, being limited to the neighbourhood daily, also impacts their access to safe and healthy play spaces and outdoor time, as compared to surrounding formal settlements.

Community space created within the Leprosy Colony in Rourkela, Odisha. Photo by: WRI India

Recognising the challenges faced by the community, the Rourkela Municipal Corporation (RMC) and Rourkela Smart City Limited (RSCL) decided to bring about sustained transformation through the creation of a young children and caregiver-friendly public space under the Nurturing Neighbourhoods Challenge (NNC).

Led by the Ministry of Housing and Urban Affairs and Smart Cities Mission (MoHUA) and supported by the Van Leer Foundation with WRI India as its technical partner, the NNC is bringing a young-children-and-caregiver-friendly perspective to urban planning across 10 Indian cities. This experience offered many learnings that could benefit Urban Local Bodies (ULBs) working with such vulnerable communities.

Listening to the community is key

Engagements conducted with the community, specifically with women and children, helped identify suitable sites. Photo by: Rourkela Smart City Limited (RSCL) 

RMC and RSCL interacted with Leprosy Pada residents, both young and old, and conducted regular community engagements to understand their needs better. Such interactions not only helped in garnering a consensus but also helped in identifying the existing usage patterns of the residents that enabled the clustering of different activities.

Suitable sites for the interventions were then identified based on the data collected to ensure the safety, accessibility, and footfall of young children and their caregivers. The involvement of local women from the start has further ensured the maintenance of the transformed space under the MUKTA (Mukhya Mantri Karma Tatpar Abhiyan) mission.

Testing solutions to gauge community response

Children playing in the sandpit near the temple in Leprosy Pada. Photo by: WRI India

Trial interventions that involved all stakeholders helped foster a sense of ownership in the project. RMC and RSCL piloted and tested out the solution using low-cost, easily available materials such as tyres and sand. These temporary play elements received an overwhelming response from the community children.

In a first, an event organised in this neighbourhood attracted outsiders as active participants. The open play space was clearly demarcated with fencing and seating was added near the playground for the accompanying caregivers. “Our children are now spending the whole day in the playground,” laughs Nandini Bariha, a caregiver of a five-year-old.

Reimagining the surroundings towards shaping one public realm

Women self-help group meetings held in the community space. Photo by: WRI India 

Seeing the growing public acceptance, RMC and RSCL started appreciating the public space and began enhancing the overall area by closing open drains, installing seating, and setting up an outdoor gym. While the play area sees a high footfall of children, the adjacent areas are turning out to be dynamic entities, attracting residents from both Leprosy Pada as well as from the adjacent colonies.

Health camp set up in the public space for the community. Photo by: WRI India 

This area is today a gathering space for multiple activities including health camps and women’s self-help group meetings.

Securing funding through scheme convergence

Seating spaces, paved footpaths and open gym area added near the play space. Photo by: WRI India 

With the growing footfall and demand from children, RMC and RSCL expanded the scope of the work to add formal play equipment in the park and enable the maintenance of the space. RMC and RSCL secured finance for the same by converging funds from various programmes and schemes — such as the JAGA Mission, MUKTA Mission and SHAKTI Mission — that aim to provide quality livelihood opportunities to slum dwellers in different cities in Odisha.

“We are happy to see outside communities come to Leprosy Pada and use our park and gym. This makes us feel dignified. We have become equals now and there is no difference between us and them,” says Gopal Bini, an 80-year-old resident of Leprosy Pada.

Through the active participation of the community, a public space for young children was not just improved but is now thriving as a space for everyone. People from adjacent communities now visit the Durgapur slum more frequently, blurring the physical and social boundaries that once existed. This is also fostering a sense of dignity in the residents who now feel like a part of the larger community giving them the hope that there is a better, inclusive future for their children.

Watch this video to know how the community is thriving:

First Published by Better India on 9 February 2024.

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