| A mother takes a look at the training tools developed as part of the linkage programme at IICP. Picture by Pradip Sanyal
Strong roots of awareness and action within the community are the best way of addressing the problem of disability. By creating links with the organisations that work at the grassroots, NGOs can reach out to those areas with the least access to information: the urban slums.
The Indian Institute of Cerebral Palsy (IICP) held a seminar on ‘Forging Links: Including Disability Programmes in Community Development’ on Tuesday, on its Taratala campus. The experiences of a three-year Indo-UK action-research project with IICP, Manchester Metropolitan University and University of Wales College of Medicine as lead agencies were presented at the daylong session, inaugurated by Andrew Hall, British deputy high commissioner.
Three NGOs with strong networks in Calcutta slums — CINI-Asha, IPER and Saroj Nalini Dutt Memorial Association — were partners for the “linkage” project, sponsored by the UK Department for International Development. The volunteers and local staff of the partner organisations received training on detection and identification of children with cerebral palsy. Then, trained therapists would visit each children’s family — approximately numbering 20 — to strengthen the primary caregiver’s skills.
The community-based rehabilitation model is one that IICP has been working with for some time. Schemes along similar lines are part of IICP’s work in the districts of Bengal. “It is a need-based, and family-based intervention, as every child has a different requirement. Sometimes we teach caregivers how to help the child sit, or how to keep their neck firm,” explains Madhuchhanda Kundu, senior coordinator, research and training, IICP.
Though cerebral palsy, a result of damage to the central nervous system, is not curable, patients can improve on early intervention with therapy. But it is not always possible for parents from the under-privileged sections of society to access a physiotherapist. So, initiatives like this collaboration are often the only option.
As explained by Iris Musa from the University of Wales College of Medicine, the original damage that occurs at or around the time of childbirth, is often compounded by the child’s environment and lack of development. The nervous system can “adapt structure and function due to environmental influences” with the proper physiotherapy. Without it, the brain’s undamaged areas are also lost.
Despite all constraints, volunteers have not faced problems reaching out to parents in the slums. Awareness drives have seen healthy response and caregivers have been open to learning ways of helping the children. “The dispirited families are very happy at seeing the instant improvement. Most didn’t know that positive change was possible,” adds Kundu.
Creating a space for people with cerebral palsy within the community has also been a key objective of the programme. Field workers have observed that even if the children aren’t isolated by stigma, families tend to shut out the outside world. But with growing awareness levels, these children are no longer seen as a “lost cause”. Says Bipasha Kesri of CINI-Asha: “Many of these children can be self sufficient. When parents learn they can complete basic tasks on their own, they gain hope.”