Lest we forget!


In India, there is a great euphoria today about the young generation building a more stable, democratic and socially inclusive society. Just recently, there was a great fanfare in Australia about the Australian higher education sector being given permission to operate in India. Though there is so much attention focussed on these young people, a significant number of the population, namely the people with a disability, remain alienated from these mainstream developments. In the 2001 Census of India, there were 21.9 million people with a disability. This is a huge number of people, yet only 2% of the population which is now proven to be under reported. A UNICEF Report estimates the number of disabled in India to be much closer to 90 million people. In properly documented developed countries such as USA, Australia and UK, the proportion of disabled people is found to be 20%, 15% and 18% respectively.

There are likely to be two main reasons for under reporting disability in India. First, the definition of disability was not adequately formulated in the 2001 Census. It appears that only easily identifiable physical impairments were labelled as a disability, whereas disability also includes mental impairments. Physical disability includes spinal cord injury, amputated limbs, blindness and hearing impairments; and mental disability includes learning disability, mental illness and intellectual disability.

Second, the stigma associated with disability and societal attitudes often make people want to hide family members with a disability. How many of us know of people in school with us who were labelled as “gadho” rather than someone with a learning disability who required extra and different type of teaching/ guidance? We are very quick to label someone different from us as ‘fools’ rather than looking into the person’s qualities that can be developed. Again, we assume that the life of an affluent person with a disability would most likely be different from that of a poor person with a disability. However, the attitude of people towards someone with a disability seems to know no economic boundaries. On one of our recent trips to Guwahati, we were shocked to be told by an organisation that a fairly wealthy family was willing to send their able bodied child to one of the most expensive private schools, but was unwilling to spend even a couple of hundred rupees a month for their child with a disability. Maybe, everything in India is analysed in terms of Cost-Benefit or monetary returns only and not in terms of human values. What a great tragedy! 

People with disabilities continue to live in the margins of mainstream society. Social perceptions and fear associated with disability also alienates families with disabilities from the wider community. Not only does disability result in significantly reduced opportunities for the individual with disabilities, it also results in lost opportunities and reduced choices for other members of the household. In a country such as India where family ties are strong and carries many rights and responsibilities, the impact of disability can be quite severe indeed. The tendency to hide or ignore the person with a disability is, therefore, very high.

There is a perception that disability is a problem, it is located within the person and needs to be corrected at the level of the individual. This perception dominates the thinking of the average person and other environmental and societal factors that may hinder a person with a disability to fully participate in society is not considered. Once certified as disabled, a person is labelled for life and that person is rarely re-examined. The concept that disability need not lead to a handicap or to a life of missed opportunities, is yet to be fully realised and the system seems to give undue power to ‘medical experts’ in deciding what is best for the person with a disability. In India, there is also the belief that disability is a retribution for past “karmas”. This results in pity and charitable acts which are informed by strong religious beliefs.

The World Bank in one of their Reports indicates that given proper opportunities, the large number of people with a disability can become an integral part of society and help generate economic growth that will benefit the country as a whole. It is high time we consider disability as a function of impairments of body structures and limitations of activities, and work towards removing the obstacles to full participation by these individuals. In other words for a person who cannot walk it is not enough to give him a wheelchair, the environment must enable the individual to use that wheelchair and more importantly, societal attitudes must acknowledge the ‘individual’ rather than the wheelchair. Let us not forget that given the right opportunity, every individual can make a valuable contribution to the society.

(The authors are Founder Members of SESTAA. This article was published in Enajori, April 2010.)