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The Citizen Activist: For having the courage to make a change

'Disability is in the mind of society'

August 13, 2008

Rajiv Rajan on his battle to correct misconceptions about disability in India.

Though I suffer from cerebral palsy, I also wanted to work in a bank or some such place like all the others. A training programme for Action on Disability and Development (ADD India) in three villages in Tamil Nadu for three months changed my perspective towards life and disabled people. I realised there are a lot of people who needed advocacy and help for their rights. I then decided to be an activist.

Life was, and is, tough for a disabled person. I will not describe what I am doing as fighting for the rights of the disabled; I am facilitating the government and the authorities to look at the marginalised groups whose basic rights are denied.

We are only advocates of ourselves, and advocacy cannot be done at one level; it has to be done at all levels. Advocacy and sensitisation go hand in hand.

Most of the disabled are not aware of their rights, so, I sensitise them. While at another level, we have to sensitise everyone from those at the grass root level to the policy makers.

These days, on an average, I travel 10 days in a month, and my travel takes me to all the places inside India which includes villages, to the national capital. I also travel outside India. From my experience, I would say there is an inclusive way of life in the villages; it is not so inclusive in urban India. People in the villages live as a coherent unit; they support each other, and it comes naturally to them. Urban India is not much bothered about others.

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If you were to ask what has to change in today's world, I would go back to the definition of disability. The UN Convention of People with Disability says, impairment is only side of the coin of disability. The other is attitudinal and physical barriers. But I would emphasis on attitudinal barrier because if the attitude is changed or improved, automatically the other aspects will improve.

I would go on to say disability is in the mind of society. There is a perception that disabled people cannot take decisions, and that they are intellectually disabled. Even the most disabled person also makes a decision but you don�t understand the way he communicates.

The Jet Airways incident that happened last June was not an isolated incident; even today similar things happen to me. It makes me angry when people treat me as a medically unfit person. A person with a heart problem or high BP is more medically unfit to fly than a person with cerebral palsy. Just because we don't look physically proto typical, we are harassed. I have been working closely with the civil aviation sector for the last more than a year but there has not been a bit of difference in their attitude.

This lack of awareness is not confined to India alone; it can happen in countries like France, Germany, etc also. I would blame the medical professionals for not spreading awareness about various conditions.

Is the situation improving for the disabled? I would say, I am frightened by the slow nature of progress.

Rajiv Rajan, an activist who works for Vidyasagar, formerly known as the Spastic Society of India, spoke to Shobha Warrier. Photograph: Rajiv Ranjan

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