Preparing Communities for Inclusion: The Role of Disabled Activists in India
B. Venkatesh
Action on Disability and Development (ADD) India has trained over 150 disabled people as activists for social change in rural areas in Tamil Nadu and Karnataka in South India since 1987. More than 5000 disabled people have since organised themselves into about 380 self-help groups. Many of these groups are addressing village issues such as drinking water, housing and land. They are not only concerned with their own particular needs related to their disability, but are motivating for water, housing, roads contesting local elections in their communities, and entering into positions of power. They are keen to address the disabling effects of poor living conditions and the relationship between poverty and disability.
“Poverty will always be a major issue when most people are earning an average daily wage of $1-2 per day.”
A new project has recently started in the urban slums of Bangalore at the instigation of an NGO called ‘Mobility India’. This project aims to build upon the experience of training disabled activists in rural areas. It is supported by UNESCAP, a UN agency, which focuses on disability. They have developed guidelines to train disabled people as trainers “to promote non-handicapping environments”. Pilot projects are being implemented in Malaysia, Thailand and Bangalore, India.
Altogether 150 people are being trained to work as change agents and to address the educational needs of disabled children. Fourteen disabled students, seven men and seven women, from outside the slum community, are among those who are being trained. The students began by carrying out a situation analysis. They identified the key leaders in the community; the elders, teachers, private practice doctors, the messenger boy for the local authority and the postmen. They attended churches, temples, water collection points, local healers and women’s meetings. They spent time listening and gathering valuable data which gave them an insight into how community members interacted with one another. They were introduced to the families of disabled children as part of this process.
They did not raise any expectations. They simply stated that they wanted to learn how poor and disabled people lived in poor communities. Once they had learnt, they would see what they could do. They did not make any promises.
In the process of conducting their research the students identified a number of barriers to development and inclusion. The first barrier was the difficulty they faced in being accepted by the community, both as disabled people and as resource persons for the community. The attitudinal barrier of the lack of acceptance was far greater than the barrier of poor drainage, for example, which proved relatively straightforward to address.
The students overcame this barrier by providing much-needed, easy-to use and useful information about common health problems, such as scabies. The community needed public health information about scabies, TB and typhoid and they came to look upon the students as a valuable resource. Information about disability issues was shared as part of the students’ fieldwork with the communities.
The second stage of the project was to enable families with disabled children to accept their child. It was discovered that many children had hardly ever left their homes before the project started. Many were deprived of companionship and play. The students encouraged the disabled children to come out and play. The non-disabled children were very curious when they first met the disabled children, but they soon started playing together. The indigenous games and play activities enjoyed by all children, such as marbles, ball games and flying kites, were used in the playgroups, which the students started. They also organised picnics in local parks and art sessions. These events provided a platform for disabled and non-disabled children and their parents to mingle, paving the way for acceptance and inclusion.
“Familiarity breeds the seeds of inclusion.”
The final stage of the project will be to encourage teachers to include disabled children in their classes. Inclusion in the family and in the community is essential if inclusive education is to be successful.
Mr B. Venkatesh, known to most people as Venky, is an independent consultant and trainer in disability and development issues. Venky is blind and ‘represents’ disabled people from the South on EENET’s steering group.
He can be contacted at: 197/27 Ramgopal Layout, Subbiana Palya Banaswadi, Bangalore 560043, India. Fax: +91 80 528 8098 Email: admin@venky.ilban.ernet.in
This article is taken from a presentation given by Mr Venkatesh at a one-day seminar in Oslo, May 1999. This seminar was timed to coincide with the annual meeting of EENET’s steering group.