For the past months now I have been on a kind of sabbatical, one I did not really ask for and definitely did not want. Ranjan’s cancer has altered my life in more ways than one, some for the better, some for the worst but all in the game I guess as life’s journey is not always what we would wish for. Anyway one of the downsides is the fact that I am not as present as I would like to be for project why. I guess I could find the time if I did not have to battle my own demons and need to have a new kind of parallel personal life to the one that has made me into a poor ersatz of Florie Nightingale! But I do get my glimpses into my dear project, albeit indirectly and surreptitiously. It could be a picture I am asked to download or bribes of a conversation when my core team drops in. So this post is dedicated to the children of project why and their incredible spirit.

It is Diwali soon and as every year my very special kids are painting their diyas. This is one of their ways of earning a little money and celebrating Diwali together. To many of you the diyas in this picture may look shoddy but when I tell you that they have been painted by children who have a wide range of disabilities where some can barely hold still, let alone hold a paint brush without shaking, they take on a whole new dimension. These diyas are lamps of hope and love. Each one is painstakingly crafted by our kids in the expectation that they would all be bought. For them this is a matter of being recognised and accepted by the very people who think of them as hopeless. They are heart broken when no orders came by. I guess everybody does not see with his/her heart!

But believe me these diyas are special as they come to you from the heart of those that people have shunned but who are the children of a very special God. The one you see in this picture was made by Manu for me the Diwali before he left us. Manu was the quintessential example of the reality that no life is worthless, and every life a gift of God. Had we not met, there would have been no project why. His wretched existence was what stirred a soul I had thought dead after the demise of my parents. I guess it had just frozen, waiting for a tear to kick back to life. For a moment, after his death, I was ready to give up but then I realised that the only way to honour him was to ensure that the show goes on, in homage to this saintly soul. I am so happy to see that once again diyas are being painted just as they were when Manu was around. I hope those of you in Delhi will see with your heart and order a few. I promise they come with the magic of making dreams come true.

TO ORDER PLEASE CALL SHAMIKA 9899134340 OE EMAIL US AT: projectwhy@ymail.com

A child is God’s opinion that the world should go on wrote Carl Sandburg. The highlight of my day is the few minutes we Skype with Agastya my grandson and the days we don’t are not ‘nice’! We have been Skyping since the day he was born when just seeing him sleeping in his mother’s arms was enough to make the old fuddy- duddies (read nani and nanou) was enough make our day. Then smiles were added on, gurgles, nonsensical words and finally coherent phrases. Now our little fellow has turned four an a half and has his own takes, some very profound on the world and life. The lad has been in New Orleans for the past 4 days and we have not seen as much as we would have liked of him but he has appeared a few times and delighted us in is inimitable ways. Now our little chap is a great globetrotter and has seen more places than one could imagine so his concept of countries and cities are quite clear. He has also learnt many languages and at some point decided to speak like Elmer Fudd.

His opening lines when we connect are often: how are you guys in India? Is everything good there? and we respond with Good and how is Paris, St Louis, London  depending on where he is at that precise moment. And the conversation goes on. Last time we connected we asked him which place did he like most and pat came the answer: I like all countries and cities I go to. We were speechless. Though these words may be taken lightly, tome they were profound and touching. Here was a child that saw beyond colours, races, languages and all that divides. Maybe there is a lesson in these simple words for all of us and a true vindication of Sandburg’s words: A child is God’s opinion that the world should go on!

Need I say more?

Recently a staff member’s parents fell ill. This staff member has been with me for many years and over these years she and her family have moved up the social ladder slowly but steadily and are now what one would call a lower middle class family. They still live in the same ‘house’, but this house has been spruced up and extended. The children attend a good public school and the family’s life has changed in more ways than one be it the food they eat or the clothes they wear. I think their wardrobe is larger than mine! Gadgets have found their way in the home and from survival mode they have moved on to urban living mode and are empowered.

When you move up the social ladder you feel compelled to give up certain things that you had accepted for long and that is medical facilities. 10 years back they went to the local quacks when they were ill or doctors who are not really doctors but glorified compounders. There is even one whose boards states that he was trained in Vienna! When your were truly unwell, then you strutted to the closest government hospital.  Strangely or perhaps this is part of the social mobility, the first thing they lose faith in  are state run hospitals, even the ones I would prefer if I had the right contact, and rush to private hospitals that are expensive and with poor medical ethics if any. In this case they shelled out more than 100 000 rupees for the both parents! They did not have any medical insurance.

But let us talk about this new kid on the block: medical insurance! If you pause and think you will realise that  medical insurance covers only hospital stay. Now I cannot state a figure but based on my life I thing we as a family have not been admitted for more than 30 days in the last 40 years in a hospital. Papa, being a Freemason, went to their clinic for his tests and spent 9 days in hospital for his cancer surgery. Mama never went to hospitals and anyway in those time there were very few private hospitals and nursing homes. Having a dear friend in AIIMS, my parents had access to the best. Papa being a government servant could have used the Wellington hospital but never did. This was in the seventies and eighties. I spent 10 days in hospital for the delivery of my two girls. So the need of hospitalisation is very minute. But what we spend on are doctor’s visits, occasional blood tests and other medical investigations and medicines. And as we all know this is a substantial amount. Every visit to the doctor plus medicines cost a bomb that no insurance pays.

So who does this great new private insurance truly benefit! Certainly not the patient. Private insurances benefit the big medical business and fraternity. Have you seen how many new fancy hospitals are mushrooming each and every day! I am astounded! Once you cross the threshold of any of these fancy portals, you are drawn into an infernal spiral. Now let us do some maths! let us say you have a 600 000 insurance cover that you pay 15 000 rs per year and you never get hospitalised, then it is sound business! I wonder what the percentage is! Should you get admitted then everything is done to hold on to you and inflate the bill. My cousin brother was according to me DOA after a huge heat attack but was kept ‘alive’ and multiple surgeries performed on him. He was declared dead the next morning and strangely the bill handed to us was very close to his insurance cover. There was a client who would not get back so let us make the max we can!

So medical insurances cover only hospital stay. That is how it goes. I am sure more doctors are recommending hospitalisation! But today I could not repress a smile when I read a news headline: Insurers in spot as medical advances push up treatment costs! The once quite lucrative business seemed to be taking a beating as new and expensive techniques were available and as the patient did not pay from his pocket he sought the best provided it fell within his insurance. If I am insured for 6 lacs, then why should I take the 70 000 option, I will go for the 3 lac one! But as is said in the article, the insurers are now plotting ways to limit their costs. As I said it is all a matter of making money, who cares about the patient!

Kalki Koechlin’s video as gone viral! The purpose of this clip is a response to the jaded and sated explanation given after every rape: “Every sexual assault case in India inspires a string of stupid and hateful remarks against women. This is our response to those remarks”. It is worth watching and also pondering about our own guilt if any. Open magazine takes us to another level when it shares in a article entitle Misogyny, Rape and Medicine, the terrible and unacceptable that rape is treated by the very ones who should heal all scars. The author is a doctor and she recounts the horror she witnessed when a child rape victim was brought to the hospital she worked in. I quote her words. They are chilling:

That morning I had been urgently summoned by a senior colleague. Her cheeks were flushed. Her eyes were shining.
“Come on! There’s a rape case, it’s really exciting!”
I followed her into the ward. A crowd ringed a cot on which, cowering in misery, and pulling her blood-stained frock down tight over her crossed ankles, was a child about the same age as my colleague’s daughter.
The other doctors who surrounded the cot were men. They were chuckling over a joke. The rapist had bitten the child’s face in his frenzy, leaving a gaping hole in one cheek through which her teeth showed. The joke that had the doctors in splits was about that gash.
Once the child’s frock was off, there were other, broader, jokes. They bet on the likely positions the rapist had taken. They rolled her over and inspected her like a piece of meat.

Will hanging a few rapists take care of mindsets? I really do not think so… It will be another come on! they are hanging the rapists, it’s really exciting!

She was born on October 1st, 1981! From the instant I held her in my arms and looked at a puckered face, I knew she was special. It was visceral and instinctive. I did not know what life had in store for us, but I knew that she was a soul sent to this world to change my life. Shamika was your happy go lucky child that would walk into any heart. She was full of fun and giggles and delighted us at every moment. Her smiles, her one liners that would surprise anyone, her hugs and kisses and her huge fan club  which was headed by her Tatu (my dad) and had members of all ages.The two of them were parthers in crime and shared many things in common, the first and foremost one being their love for food. On the way back from school there had to be a stopover at the bakery where she gorged herself and made me wonder why she was not eating her lunch. Both she and her Tatu had to fight a battle of the bulge! When he left us, she was 11 and took a long time to get over her loss.

There was also an elderly colleague from my Asian Games days who drove many miles to reach our house at the dot of 8 am with a bunch of bananas and then take her for a scooter ride where she sat backwards and buy her anything she wanted from the local grocery store. She just had to point and it was hers. It could be a treat, a shampoo bottle or some other irrelevant thing, but that did not matter to Dear Mr Parwana who loved this child in a way I have never experienced. He called her Choottu Ram and she did the same.

Shamika was bright and spunky child and we all thought she would sail trough school and university and walk the easy road.

But I told you that I had an intuitive flash when I first saw her and knew she was not the one to walk the trodden path.  Shamika had to take the road less travelled very early in life. School was not meant for her as she was all heart, and maths and logic had no place in her mind. But as a parent I had to push her from class to class not hearing her many cries for help. I stand guilty of having not heard for 15 long years. She bravely did her best, but her best was not enough for the systems that exist in our world. Somewhere along the way she had to bear a pain that cannot be healed, a pain that shattered the very foundations of her life. What followed were some terrible years when her life was thrown out of gear and she lived in a shadowy world that the young girl had built to protect herself. It would take many years for her to come out into the light again. She eventually did but left me wondering if I could have done more to protect her. I still live with this guilt and will probably carry it to my grave.

School was never meant for this child who only knew how to look at the world with her heart. When she ‘failed’ an examination by a single mark something happened in me and as I took her in my arms wiping her tears the mother’s instinct made me say the following words: You do not have to school again! Her whole body language changed and I could feel her gratitude in every cell of my being. The ball was in my court. But I stood firm and parried all the silly inanities family and others flung at me. I had my priorities right: first and foremost was my child’s happiness!

Shamika had always told me she wanted to work with special children. So I needed to find in this world where success is measured in certificates and degrees and not in compassion and empathy, a place where my child could reclaim her life. It was not easy as I trudged from NGO to NGO. But ultimately I found what I was seeking. Shamika was 15 when she began to ‘train’ at Action for Autism. I can never repay Merry for accepting her, as she gave my child a second chance in life. Shamika worked for 7 long years with autistic children and in Merry’s words she was like a fish in water. From an unpaid volunteer she became a paid staff! Then one fine day she decided to join me at project why where she looks after our special children with an rare passion and compassion ! The children love her and so does her team.

It is sad that in a country like ours hands down work does not count and though Shamika has spent 17 years working 6 days a week, she cannot sit for a special educator test as she does not have a class XII certificate. I must admit that if Shamika had walked the travelled road I would not have set up project why as in many ways she was my inspiration. I feel humbled and grateful as she is the one who opened my eyes to a whole new world I never knew existed and fell in love with.

Today Shamika is a stunning young woman who has dreams of her own, exceptional talents and a quiet strength that is often not revealed or accepted. My hope is that she finds her way to happiness and will stand by her till my last breath.

I will end with a quote that sums it all: What I want most for my daughter is that she be able to soar confidently in her own sky, whatever that may be.

Happy birthday dear child and thank you for having come into my life.