More and more people in the poverty line now have access to toilets in Deoghar and Pakur districts of Jharkhand. Thanks to the Total Sanitation Campaign. But, is this programme really catering to all? Including the physically challenged?
The Total Sanitation Campaign of the Government of India offers incentives for families below the poverty line to construct toilets with technical designs approved by the District Water and Sanitation Mission (DWSM) responsible for sanitation. However, the evidence is that people with special needs are being left out. Even if their families have toilets, these are not user friendly or appropriate. This means that, despite the programme designed to be ‘total’, there is not really universal access and not all people can live with dignity.
To enhance the inclusiveness of access and to sensitise the service providers and the community on the need for inclusive approaches in planning, design and implementation, several initiatives were undertaken by the Regional Office East for the state of Jharkhand along with Gram Jyoti, a partner of WaterAid. All this was possible because of one person, Jitendra Turi of Sisanathur village, Jharkhand who proved to be really special.
Jitendra suffers from multiple disabilities, with locomotor, visual and mental impairments. He comes from a Scheduled Caste (‘lower caste’ in India) family and lives with his parents. Even at the age of 25, he is still dependent on his mother for most activities. He is not a child and cannot go to school and he cannot participate in village activities.
The family did not have a toilet at home, unaware of its importance in reducing dependency and increasing dignity for their son so that he could lead as normal a life as possible. For defecation, his mother usually took him to the outskirts of the village. Sometimes, when was unable to take him out, she would ask him to defecate in a corner of the village lane, which earned him the ridicule of children and villagers. “I felt such shame in telling my mother to help me for defecation. I am grown up but how can I go out? I cannot see, nor am I able to walk,” recalls Jitendra.
Jitendra’s family has a small land holding. Burdened with poverty and looking after the needs of their son, his parents did not participate in village meetings. They were unaware of government incentives and entitlements, or of toilet options which could help their son.
Gram Jyoti was working on sanitation in this village when Jitendra was spotted by the programme team. He brought up Jitendra’s case at a village water and sanitation committee that had formed to work on sanitation and hygiene related issues. His family was approached, and the benefits of having a toilet at home explained. The family contributed labour and the mason charges for constructing a toilet.
Jitendra’s toilet is made of mud and bricks, with a raised squatting platform fitted with a rural pan, which can be used as a commode. The walls are fitted with a supporting rail for easy movement. To help him with his visual disability, a bamboo pole leads from the main door to the toilet. After a few rounds of demonstration and practice with Gram Jyoti village motivators, Jitendra now locates and uses the toilet on his own. He is more self reliant and motivates others saying, “If I can use toilet why can’t you?”
Extending the campaign for disability rights
Gram Jyoti has taken up the cause of disabled people on other fronts as well. Abha, the project coordinator says that the organisation is advocating the restoration of pension for people with special needs, provisioned under the Swami Vivekananda Scheme, but now discontinued. The organisation is also helping his family with activities/benefits under the Mahatama Gandhi National Rural Employment Guarantee Act. Jitendra’s family has been provided with an irrigation well under this scheme.
Key lessons from the community process:
- People with disabilities like Jitendra should not be limited to being the recipients of charity. They need to be brought into village forums, where they can also have a say in village processes.
- The environment surrounding people with disabilities is a problem, not the people who have these special needs. In case of Jitendra, his disability was a result of social shortcomings in terms of awareness, attitude, approaches and accessibility to services.
- Sometimes what is required is not a new hardware technology per se, but new and sensitive ways to implement technology, with appropriate modifications. In this case, the adaptations were such that the toilet can be used by all family members.
Linking Community processes to District forums at Deoghar and Pakur The work supporting Jitendra to live his life independently and with dignity was used to influence and reach out to more people with disabilities. A district consultation was organised in Deoghar and Pakur on “Influencing WASH Service delivery for people with disabilities” in collaboration with DWSMs, and this was attended by representatives of NGOs working on water, sanitation and hygiene, and governmental departments for Women and Child Development, Education and Drinking Water and Sanitation.
This led to the following actions at the government level:
- Restructuring village water and sanitation committees (VWSC) to ensure representation of people with disabilities.
- A promise to revise district project implementation plans so that they include special needs.
- Raised awareness of district officials on WASH provisions for people with special needs.
- Incorporation of technical modifications to existing water and sanitation facilities to make them more user-friendly.
- Design and cost estimates to make government institutions in Pakur and in Deoghar districts accessible for people with disabilities.