Writing at the end of a long and trying day in which our work was maligned and our integrity questioned may not be the best idea. But writing is therapy and – usually – the only way I can make sense of anything. This morning, for reasons which now elude me, I thought it would be nice to go and meet the Chief Medical Officer for Dehradun District. I thought he would like to hear about our work with children who have special needs: I thought he would want to know what we do and why we do it.
He had already decided – without ever visiting Gubbara, Chhota Gubbara, Karuna Vihar or any of our other centres – that what we are doing is useless, over-priced and, let’s face it: a total waste of tax-payers’ money. He insulted us; he insulted our work. Whatever his reasons, whatever his limitations: he judged us without any idea about what we do and why we do it. He didn’t understand that kids with disability need more than a diagnosis; that their parents need more than a prescription and that when delivering services, success lies more in quality than in quantity.
Lucky for me, I went straight to Gubbara after my meeting. It was necessary for my mental health. There I found the usual gathering of families; the usual assortment of children who had, prior to coming to us, been rejected and reviled everywhere they went. At Gubbara I met parents who had, for the first time, for the first time, seen their children acknowledged, welcomed, celebrated. And I saw our over-paid, waste-of-space staff worrying about each and every baby. I saw how upset they were by the kids who would return to their villages with no options, no choices, no future, when with a little skilled early intervention, they could overcome their disabilities and be part of the mainstream, part of the crowd, part of life!
The CMO sees things differently. And of course, he is entitled to his opinion.
But he is not, I believe, entitled to get in our way. He is not entitled to block our funding, harass us for no earthly reason or force us to jump through hoops he has erected for no other reason than to see us jump through them.
Stories about government funding and corrupt officials are excruciatingly boring to everyone except those intimately involved. Those intimately involved forget this fact regularly.
Not me! I have no intention of boring you with the details. Because I know better than anyone how boring this story is. I am so bored with it I am falling asleep this very moment. I have been chasing our ever-elusive grant for the past year and believe me, I am BORED TO TEARS.
But not just bored. Also Humiliated. And Repulsed. And also – did I mention it? – Enraged. Because the Latika Roy Foundation – for the past twenty years! – has been doing the work that the Government of India has failed at shockingly and shamefully. We are the ones looking after our children with disability. We are the ones giving them a chance, recognizing their potential, believing in their promise. We are – actually – the ones who love them.
But at every turn, we are forced to explain ourselves, to justify our work, to make a case for our existence. When in fact it should be the CMO and his friends who are forced to do that. Not us.
Because we understand disability. We know about vulnerability, about chance and difficulty and sheer bad luck. We, of all people, know what this life is about. And we, of all people, are doing something about it.
We are building schools and colleges and early intervention centres. We are training parents and community health workers. We are teaching people to believe in the potential and the promise of our children and we are giving them the tools to make it happen.
Get on board or get out of the way. Dr CMO: are you listening?