IDCS – India

Initiatives working with deaf children in developing countries vary immensely as a consequence of differing definitions of deafness and approaches to communication. There are also varying estimates of the number of deaf children due to unregistered births and poor sanitation, which can cause deafness in early childhood.

In India, many professionals guesstimate that there is a deaf population of approximately 3 million, and practical experience in the field shows that four in every 1,000 children are born deaf. They also suggest that only about 10 per cent of these children are receiving actual services, of which 90 per cent are urban based.

As in any other country, available services are of many types and cover all aspects of disability work. There are direct services in both urban and rural settings, a variety of service providers, laws to ensure the rights of disabled people are met, advocacy programmes, etc.

In the last 20 years, rehabilitation programmes for deaf people have received a spurt in growth, changing probably as much as in the previous 100 years. The impetus for the changes can be traced in part to two significant events:

• The Indian government’s active involvement in the field of disability and establishment of the Ali Yavar Jung National Institute for the Hearing Handicapped (AYJNIHH) in 1983
• The impact on awareness of the Rights of Persons with Disabilities since 1981, the year of disabled people

These two events have had a direct impact on the lives of deaf people, and India is one of the few countries in the world to have passed a law on disability, strengthening and reinforcing its commitment. As outlined in the Disability Act, each State has appointed special disability commissioners to ensure that the provisions of the Act are enforced. There are also a number of special concessions for disabled people with regards to travel, disability pension, job reservations etc.

Whilst the rights of all people including disabled people are accepted in India, each State operates very much like a small country and regions take on their own agendas depending on the levels of development: the south is much more developed than the north, and a similar contrast exists between the west and east. The majority of States are greatly lacking in services, and superstitions linking disability to Indian cultural and religious beliefs are often prevalent. However, the very fabric of Indian society is based on a very strong family structure. Thus, disabled people are accepted, cared for, fed and looked after like anyone else, and disabled people (who may not be receiving any kind of rehabilitative service) are still accepted within their families. It is the break-up of the joint family system, the pressures of living in rapidly developing urban societies and the institutionalisation of disabled people that has caused their segregation.

Where groups for deaf people do exist, they function primarily as clubs and are led by hearing people. As one deaf boy explained: “We can meet the prime minister of the country if we wish, we have that much confidence, but what do we do when we get there since there is no way to communicate with him?” Deaf people identify other issues such as the mistaken belief that if you don’t speak, you are also mentally retarded. Deaf children are much more vulnerable to physical and sexual abuse, and there is a dearth of professionally trained counselors who know how to work and communicate with deaf people.

Professionals in India believe that these issues stem from the shortage of special schools, within which very few acknowledge sign language as a medium of instruction. Yet there is a lack of proper and effective audiological support in oral education. This all results in inadequate communication and language skills in the majority of deaf children, impacting on poor literacy skills in the deaf community at large.

The reality is that there will probably always be a lack of fully trained speech therapists or teachers of the deaf to cope with the numbers of children needing services, or to work in remote rural areas or urban slums. There are several recognised training courses, but many professionals feel that the quality is poor, the practical training is inadequate, there is no follow-up, there is too much emphasis on oral teaching and teachers are not taught how to use total communication (which includes signing). The situation is aggravated by the absence of an accepted system of communication: ‘total communication’ very rarely happens except amongst the deaf population themselves, and even then they use gestures since there is no developed sign language.

A lack of deaf awareness and understanding leads to any number of misconceptions and superstitions, as well as late diagnosis. Very few programmes exist that support parents with deaf children, and limited networking between organisations for deaf people, professionals or service delivery organisations makes it difficult to address issues at a national level.

India is an old country, with traditions that go back centuries. Those of us involved in development projects often make the mistake of being impatient. We enter communities in which attitudes are formed over many generations, and we set out to change them within a few short months. Real change cannot come about in such a timeframe.

The challenges for organisations working to support deaf children in India are enormous, but the Indian government is actively involved in the field of disability and there is well-established NGO network. As a newly established international NGO, IDCS aims to learn from and use this network to develop sustainable models of service provision that we hope will bring long lasting changes for deaf children in the future.

Our feasibility work revealed that there is a dearth of trained professionals working with deaf children, especially in rural areas. There are also issues surrounding early detection and intervention, access to information and education. These have been the focal points of NDCS’s work in the UK and it is expected that they will continue to be important for IDCS in India. Visit the sections on our stakeholder consultation in Karnataka and projects and partnerships in India out more about our work and plans.