I entered the world of disability quite by accident. In hindsight it seems it was preordained. My first encounter with the Giri Nagar slums was for purely personal reasons. I had gone to meet Mataji, a healer, with the hope that she would cure me of the depression I had allowed myself to seek in post the demise of both my parents. She did much more than that. She was a true changemaker. But that is another story waiting to be told.
I often spent long moments sitting on the step of Mataji’s home watching the world go by, a world I felt strangely comfortable in. Perhaps it was because it was so very different to mine. Anyway it is while sitting on the doorstep which was on the street that I first saw Manu and got my first exposure to the plight of one who is disabled. Manu touched a deep chord in me and stirred emotions that I find hard to describe. Let us simply say that even today when I think of that instant I am covered in goosebumps. At first I just watched too frightened to ask any question. But then mustered the courage to hear a story that was heart wrenching. I do not know how it happened but I heard myself making a silent promise to myself, one that no one heard but me: One day you will have a home Manu.
The journey had begun. It took years to build the home pledged. And a very circuitous route with many milestones: a spoken English class, a day care for special kids – you see Manu had to have his set of pals – after school support, early education and so on. Till one day we had enough strength to open our residential facility for special people. Manu had his home. It is there that he spent the last days of his life and passed away gently leaving me completely lost. It is then that I realised how much Manu had given me and what an special soul he was. If not for him project why would not have seen the light of day. He proved beyond doubt that NO life is futile and worthless.
Over the years I have pontificated about the plight of special children and adults, about how tenuous their morrows are, about how insecure their life became once they lose their parents, about how little society has done for them, about how much they need to be accepted and loved. And it was for them that Planet Why was conceived. You can understand my dejection as I slowly begin to grasp the fact that Planet Why may never see the light of day and my special children may have to face indignity and disrespect.
All these sombre thoughts have been running in my head as I slowly watch the quietus of planet why and I wonder whether I truly gave it my best. Had I pushed the project adequately? Had I put my heart and soul into it? Was I paying for my new found reclusion that resulted in my isolation from the rich and famous? Should I have shed my disdain for page 3 soirees and slipped into my my high heels more often? How I regret not knowing those who have money. I know that I could convince them were I able to cross their threshold. But what is the point of lamenting now when it is too late. Or is it?
A few weeks back I lost a close one. Strangely this demise came with a rider. It is was not one that could be dealt with an adequate amount of tears and eulogies. This untimely death came with a deafening question: can you walk the talk! Let me elucidate. The one who left us also left a younger sister. She is challenged though no one ever accepted that reality. She lived all her life in a golden cage, jealously protected by those who loved her. No one was willing, as is often the case, to accept that she was special and thus needed special care. All her life she had been made to believe that she was like all others and kept away from the world, as her close ones built one for her within the confines of four walls and peopled by a handful only. Everything in her life was controlled and managed. She had no say whatsoever and the ones who ran her life had no knowledge whatsoever of the needs of a special person. We too never intervened as one would not have been heard and sometimes it is easier to let things be. But the God of Lesser beings had another plan. He took away her close ones in a short span of time leaving her alone but strangely also free. The question was would anyone help her enjoy her freedom.
One could have left her with what remained of her family and done the bare minimum: a few visits, a small gift thrown in, some hugs and comforting words not really meant. But as I said it was time to walk the talk, to remember the spiel on dignity and respect, on care and love. It was time to act and let the long imprisoned soul free. So barely a few days after the departed had been laid to rest I decided to get her out of her walls and into the big world. She would come to project why and be part of our special class. I must admit a little sheepishly that I was a tad apprehensive at first. How would she react? How would the others react? Would she like it? What can I say: she took to the project like a fish to water. She was all smiles and everyone took to this new aunt, for want of a better word. For the first in her life of almost half a century she had something that was really hers: a place to go to every day, friends to interact with, dance it, share a meal with and above all laugh with. I cannot describe how humbled I feel and how overwhelmed.
Was it time to make a last ditch effort for planet why!