Dec. 03 marked the International Day for Persons with Disabilities. We see a host of coverage on issues that are otherwise not brought to our notice, or concerns we don’t even know we should care about. This is the significance of having a day devoted internationally to an issue. But the day has passed. Beyond customary announcements or token actions, we must ask in a lasting manner how we as a society treat people with disabilities and what needs to be done so that they can continue to live a meaningful life with dignity and respect.
On Dec. 03, like on any other day, I took a one-hour walk just as the world was waking up. Despite the growing traffic, an occasional blaring horn and the noisy loud speakers in places of worship, I could hear the birds singing and could feel the world.
But I know that this is a temporary state of affairs for me. A day will come when I will no longer be able to move around like this. Like everyone else, I also have only about 10% chance of dying a sudden death. The greater likelihood is that before I leave this world, I would be bed bound and possibly dependent on a wheelchair for mobility for a period of time.
By the fundamental rights enshrined in our constitution, I believe I have a right to live with dignity even at that time. But I would not have the strength to fight for those rights. I can enjoy my rights only if the world around me accepts that those living with major disabilities have rights too. Granting me life with dignity would mean giving me the opportunity to be part of this world. It means that those around me treat me without the cruel love that makes them say, ‘Why do you want to get on to a wheelchair? We shall bring whatever you need over here. Just rest’.
I can, at that time, enjoy any freedom of movement only if I have access to the courtyard or the landing in front of my house and out on to the sidewalks. This would necessitate a ramp to wheel my life out of the confines of my home. But practical difficulties would lie in my way. We do not have all that much space in front of my house. Apartments are anyway getting more compact as India grows.
No one might realise the earthquake brewing deep inside me as I realise that my life does not really amount to anything much to anyone anymore. Family members and the children don’t really mean to say that my life is less important but that’s the way it feels to me. Never again do I demand a ramp.
And if some day, I school myself to think positive, get all excited about something and want to enrol myself on an online course, someone may look at the brochure and exclaim, ‘Oh God. This is so expensive!’ Do I really mean it? And I withdraw, not only from the course; but also farther away from life into a shell deep inside me that I did not know existed.
I would lie there stripped of the right even to feel sad. And I would lie there wondering why the world around me assumes that I am useless because I cannot walk. Why are they no longer involving me in family discussions? In decision making? In child care? Why would I want to exist if I am no longer needed? If I am to be just another not-too-beautiful vegetable rotting in a room at the back?
Add to all this the numerous physical ailments that may follow because the family has not been educated in my care and because nobody bothered to advise them about the right kind of bed that would prevent pressure sores on my back. Or because no one took the trouble to offer me the choice of intermittent catheterisation of bladder which would avoid those deadly urinary infections. And all this because of the callousness of a health care system which has not included rehabilitation as a major element of health care in our country.
A doctor who sees me may wonder whether I am in depression. No one is likely to sit down beside me, lay a hand on my arm and ask, “You look sad. Would you like to talk about it?”
I have been talking about the eventuality of a disability that will happen to 90% of us at old age. But that picture is not complete. And now imagine this happening to the lakhs of young people in India who get paralysed below the waist because of road accidents, falls from construction sites or trees or road accidents. For them the problems are not just for a few months or a few years, but a whole lifetime!
We do not need a lot of money to make lives liveable for them. We only need the recognition that health care is truly ‘physical, social and mental well-being and not only absence of disease or infirmity’ as defined by WHO. If we do, we will learn to make rehabilitation an essential part of that healthcare system. The first requirement is to make our minds accessible to them, then our homes, then the sidewalks and finally our automobiles.
As Hubert Humphrey said, “The moral test of a society is how that society treats those who are in the dawn of life…the children; those who are in the twilight of life…the elderly; and those who are in the shadows of life…the sick, the needy, and the handicapped”.
(Dr. M R Rajagopal is the Chairman of Pallium India and Director, Trivandrum Institute of Palliative Sciences, a WHO Collaborating Centre for Training and Policy on Access to Pain Relief) (Through Foundation of The Billion Press)