In the Bonesetter's Waiting Room

by Aarathi Prasad

  PAWAN TOLD ME that when the Delhi project started, he expected it to last five years. Just over twelve years on, he attributes its longevity to the fact that the longer the project continued, the more questions the team found to address. Why, for example, does the area of a blind person’s brain that processes vision remain so flexible, despite never having been used for that purpose? And why did some children improve so much more than others, when their starting point – the blindness they had for an equivalent number of years – was the same?

  The neuroscience being done in labs at MIT, Boston and IIT Delhi could also lead to ‘bio-inspired design’ – that is, the creation of computer vision capability that models itself on human biology. Inadvertently, the Prakash studies have also fed into other research on autism. From looking at how blind and newly sighted children navigate the world, it appears that some of the hallmark features of autism – an insistence on uniformity and ritual, anxiety created by sensory overstimulation, enhanced abilities in particular fields – may be caused by sufferers’ brains not having the same predictive abilities as people without autism, the lack of which means that events can seem to happen unexpectedly and without cause. As the work proceeds, Pawan hopes it will benefit autism diagnosis and therapy.

  In the meantime, as Pawan says, the most immediate and tangible impact of Project Prakash is the change it brings about in formerly blind children’s lives. From a 2013 survey of ninety-three of their children, they were able to report that this improvement had had a positive impact on their independence, social integration and aspirations. But there is still a huge amount of work to be done in India if a lasting solution to the problem of childhood disabilities is to be found.

  AS I PREPARED for my return to London, it struck me that the challenges and solutions to the health of this great nation are not as diaphanous as they may at first seem. Instead, they are rooted in issues that are few in number, though massive in their implications. During my travels I’d met doctors from different traditions treating patients from various cultures and religions who were suffering from a variety of conditions in environments ranging from city to jungle. Despite all this diversity, there were nagging key commonalities that rose to the surface again and again. One wonderful thread had been the seamless implementation of technology to excellent effect in a range of contexts: health innovators that are already changing lives in digital India. But solutions remained to be found in situations almost uniformly marred by an absence of a unified government programme or state regulation; insufficient or ill-considered (culturally or contextually) public health measures; a backdrop of poor nutrition and living conditions; gender-based discrimination; lack of access to education; inadequate uptake of vaccination programmes; and always a deficit of trained medical staff where they are needed most.

  The task may seem inestimably daunting, but fortunately, as is the case for all of the forceful individuals I met during my year of travels through India’s medical landscape, Pawan is not intimidated. ‘Just being a small-time good Samaritan is not enough. We cannot rely on the government to realise something needs to be done,’ he told me. ‘We have to be the actors and advocates in order to make a difference. In order to make sure all children get care, we have to bring the government into the picture. The reason I am a little optimistic is I believe we will connect with the right people to get governmental resources directed towards these children. We ought to be able to attract financial wherewithal. It’s a dream, no doubt. There is immense need. But here there is great goodness and the desire to do the right thing.’

  Acknowledgements

  THIS BOOK WOULD NOT have come into being had it not been for the curious mind of my friend George Loudon and the encouragement and interest of the Wellcome Trust’s Ken Arnold and Kirty Topiwala. It has been a pleasure to work with my publishers, Andrew Franklin at Profile in London and Thomas Abraham at Hachette in Gurgaon; and my patient and brilliant editor Cecily Gayford. Throughout the wonderful journey it took to put these stories together I have also been fortunate to have had family, colleagues, and friends – old and new – to support, critique, translate, discuss and accompany me. I am incredibly indebted to you all:

  My daughter, Tara Lumley-Savile for being my companion and diary secretary through the burning April heat and the sodden July monsoons, when instead of being on a Mediterranean beach like your friends you were ankle-deep in sewage in a Mumbai mega-slum. My mother, Nalini for your unquestioning support throughout, for advice with your British Library India-Office curatorial hat on; for making Bangalore home during my investigations there; and, because I was too young in 1978 to have these conversations with your father – for filling me in on the years in which he researched and taught Ayurveda in Mysore and served as advisor on indigenous systems of medicine to the government of India. I should also thank him, my grandfather, Professor Chandragiri Dwarakanath, though he is no longer with us. I am honoured to have been able to consult his prolific writings for a book of my own. My sincere thanks also to my aunt, Professor V. Sujatha at Jawaharlal Nehru University, Delhi, whose books and words and work on knowledge, health and medicine in India inspired me greatly too.

  Professor David ‘Flintus’ Osrin and Dr ‘D. I.’ Nayreen Daruwalla – not quite sure how to thank you for being my guides and friends in Dharavi, I don’t think Bag Foot and I ever laughed as hard as when we were eating pizza and drinking beer in the ‘off-worlds’ (or Colaba) with you. Your work is phenomenally creative and unforgettable and I am grateful for being allowed to be a part of that. Thank you, SNEHA staff and your impressive sanghninis with all my heart for sharing it with me. For contacts, advice, and useful discussions, huge gratitude to my friends and colleagues Frank Swain, Dr Sushrut Jadhav and Dr David Pencheon. Dr Guy Attewell, you will remain a hero of mine for that epic journey from Pondicherry; and Dr Nandu Kishore Kannuri, because my Hyderabad adventures would not have happened without your brilliant help and encouragement. In Hyderabad I am also grateful to my wonderfully resourceful Urdu translator, Ramal Nikhath Alwi, it was an honour to work with you and to have spent time with your family of inspirational women. You brought such magical medical worlds to life. I would not have experienced ‘fish medicine’ without the Wellcome Trust’s Dr Shirshendu Mukherjee’s wonderful tale, and it was my great good fortune to have had as my house mate Dr Lorena Fernández Montalvo, who between surgeries at the Moorfields Eye Hospital found the time to give me a much needed ophthalmology 101.

  So many people I admire have given their time generously so that these stories could take shape. Thank you for allowing me into your worlds in Bangalore, Hyderabad and Maharashtra: Dr Devi Shetty, Dr Darshan Shankar, Dr Ashwini Godbole, Dr Annama Spudich, Sunoj D, the Bathini Goud family, Hakim Sultan Rasool, the Hakim Gulaam family, Anusha, Parivallal, Dr Rishikesh Munshi, Tushar Khorgade, Dr Baitulle, Dr Rani Bang, Dr Abhay Bang, Anindita Ghose, Dr Rashmi Shetty (and Upasana), Dr Satish Arolkar, and Farah Khan. From Project Prakash: Professor Pawan Sinha, Dr Suma Ganesh, Dr Tapan Gandhi, Dr Umang Mathur, Dr Paula Rubio-Fernandez, Harvendra Dhillon and Shakeela Bi, Junaid, Poonam and all the incredible Prakash children. Thank you also to all of the associates, admin staff, drivers and cooks and patients of the wonderful organisations I spent time with who made my research possible. If I have left anyone out, I apologise. You have all been wonderful teachers.

  It is often painfully exposing to allow words composed in a writer’s self-imposed isolation to be read and criticised, but nothing could be more important, and I would like to thank those who made time to read what was amorphous and therefore who shaped it. Somehow, when I’d barely begun my research for this book a friend and colleague at the UCL Institute of Global Health got me to read a chapter out loud to an audience of tropical medicine experts congregated near Great Ormond Street Hospital. I kept asking them if I should stop, because I knew the chapter was overly long. They insisted I read on. Thank you Dr Rodney Reynolds for getting me to do that. Not being in my comfort zone turned out to be g
reat fun. Thank you Kate Hoyland, an accomplished author and colleague I was lucky enough to share an office with at University College London; Dr Simon Kay, my colleague and friend from our British Council days and lunch companion during our Wellcome-UCL ones, thank you for always pressing me for ‘the next chapter’. Jen Franklin, for egging me on when I felt like giving up; and for wise words on the importance of non-doing. James Hampson, for his musings from Cairo which ameliorated everything (even when I was trying to catch wifi outside a tribal hut one dark, forty-eight degrees centigrade night in a cobra-, malaria-, and terrorist-filled jungle). Sorry for cutting into your guitar time by making you read my Dickensian drafts. And thank you for being my sounding board Dr João Medeiros, and for having far more faith in me than I had in myself. Your ear, eye, and that sitzfleisch philosophy have proven invaluable in the writing of this book. And, Jacob Singh, thank you for the debates and conversations – genetics to gyms, it was all thought-provoking, and it was fun to experience a whole different side of Delhi with you.

  Though I have enjoyed it all immensely, I often wished I had more time to do a book of this sort the justice it deserves. The ‘tea and petites madeleines’ of my ancestry, these issues and this place, to quote Proust again, ‘blended the uncapturable whirling medley of radiant hues, and I cannot distinguish its form, cannot invite it, as the one possible interpreter, to translate to me the evidence of its contemporary …’ In this work I merely present an attempt to capture at least the radiant hues – and that would not have been possible without all those I met on my travels over the last year: from my Mumbai, Delhi, Bangalore, Hyderabad and Jaipur friends (old and new), to the auto drivers and manual labourers who told me what clinics they chose and why; to the social workers, scientists and doctors reshaping Indian medicine today. Thank you all.