I live my life on a wheelchair. I cannot move my lower limbs. I have only partial use of my arms and hands. I cannot hold a cup; I cannot even comb my own hair.
I have quadriplegia.
I have two choices. I have a loving family. I am sure my mother, my sister and other family members will take care of me. I need only to stay in bed. They will feed me, bathe me, and do all they can to make my life comfortable.
But I want you to know that my paralysis does not define me. I want you to recognise that I am more than my body. My brain, ordinary as it is, still functions. I also have other abilities.
I am a Master of Computer Applications and can do several things. I can use my skills to earn a living. Not only that, I can even contribute to society. My family’s loving physical support can only keep my body alive. To enliven my mind and soul, I need to be considered a human being.
I began by saying I am a quadriplegic. But I would want you to think of me as a human being with quadriplegia. I do not want to be a burden. I want to be able to contribute, to make myself useful.
There are hundreds of thousands of people with paraplegia or quadriplegia in India. Society today offers almost all of us only one option, compassionate care. Can you offer us option two, right to self-respect? Please do not shower us with love that will keep us incapacitated. Show us some empathy. We are only offering to do our bit for the community.
A few days ago, kind friends invited me to a posh restaurant for dinner. From where I stay, at Pallium India’s Trivandrum Institute of Palliative Sciences, I could wheel my chair across to the elevator, go out through a ramp and cross the street. The restaurant is almost directly across the road. But I could not accept the invitation.
The road is flanked by beautifully paved sidewalks, but there is no slope anywhere between the road and the sidewalk. There is no way I can wheel my chair into the sidewalk. And once inside the restaurant, there is a step. A normal step for you, perhaps – but a mountain for me.
However, kind friends and waiters in the restaurant would offer to lift my chair and take me to the restaurant. Imagine yourself in my position. Would you like to feel that you are burdening four or more people? Perhaps one of the waiters has a bad back and you are contributing to his eventual incapacitation? How would you like to be the object of sympathy of a dozen eyes, curiously concentrating on this helpless body being carried up?
The Rights of Persons with Disabilities Act, 2016, recently passed in Indian Parliament to give effect to a related UN Convention of 2006, promises among other things equality of opportunity and accessibility. This is the follow up action to a UN convention India had ratified as early as in October, 2007! So, as much as I would want to be optimistic about the Act, doubts persist.
How soon will the responsible officials be posted, relevant rules be framed by the Centre and state governments and action be taken by concerned authorities to make public spaces and attitudes in India disabled friendly? Authorities should take measures to promote and protect the rights of all persons with disabilities to have a cultural life and to participate in recreational activities equally, helping them to pursue their interests and talents.
The Act offers protection against abuse, during natural disasters, armed conflicts, etc. What I am concerned about is the small stuff, like being able to cross the road in front of my house, enjoy an evening in the park, join a group of friends for an evening meal at a popular restaurant. But these too will have to wait, painfully long, stretching to years and years, caught in procedural delays.
I am lucky that I am in an institution where they broke down a couple of doors and created access for my wheelchair, even into my bathroom. They have given me a facility where I get physical help for an hour so that I can work on my computer and contribute to Pallium India’s work during the day putting to good use counselling skills I learnt from a course to help people like me. I can help out in the half way home that this institution created for people with paraplegia. And so I can sleep in the night often feeling that my day has been worth living.
I am not writing this to get the attention of lawmakers. They could do more, I am sure; many of my friends are asking for more.
My request is to you – each one of you. If you have not thought about the word empathy, give a minute to put yourself in the place of someone who has a disability or paralysis. Allow us to be human beings. Break the barriers that prevent us from reaching your world.
March 12, 2017 at 9:47 pm
Disabled persons can contribute a lot to social progress.