In the Bonesetter's Waiting Room (23 page)

‘Wouldn't that demand a huge infrastructural change in India?' I asked. Sitting where I was, in a camp in a jungle, I wondered how such emergency access would be provided.

‘No, that has already happened in India,' Abhay insisted. As a result of the country's economic boom and international investment, the India of the 1980s, even the 1990s, was a far distant memory in 2015. ‘In the past fifteen years, there has been a growth in private vehicles, roads have improved,' he said, ‘mobile phones have appeared. Every village has tractors or four-wheel-drive vehicles. So emergency access to hospital care has become much more feasible. But we are preventing the development of specialist emergency obstetric services because we are so busy managing this huge load of deliveries of women who don't really need hospitalisation but come because they are paid fifteen hundred rupees.'

What Abhay seemed to be saying was that, contrary to appearances, India's healthcare problems did not always stem from a lack of access or facilities per se, but from a failure to make the best use of the resources available. Certainly, anyone who has been to a government hospital in India will have noticed that they are already crowded beyond capacity. Abhay's point, as I understood it, was that removing unnecessary pressure on the infrastructure – be that health centres or the means of accessing them – could ensure that they were more intelligently funded and efficiently used. More importantly for the long term, the hope is also that smarter policies and targeted funding would help to give rural communities the well-equipped and well-staffed health centres they deserve – and put a stop to pregnant women being used as a commercial venture.

‘Is the government listening to people like you?' I asked Rani. ‘I mean, you have the evidence, you have the statistics … the studies over the years …'

‘Previously I used to go to these government meetings and all that, I used to go to a lot of international meetings. And then I stopped going. Because it was so frustrating,' she replied. ‘So frustrating. The same faces would come to these international meetings, the same women, the same representatives all from an urban elite background. Who don't have any sense of what is happening in rural areas. And they would say the same rhetoric there. The meetings would be in five-star hotels, in big cities. And then nothing happens … So I thought instead of spending that time maybe I can help my women if I work here. That way our home-based care was taken up across India and in Nepal, Bangladesh, Pakistan and several African countries, including Malawi, Zambia and Ethiopia. Our reproductive health programme was accepted by governments all around the world. The government of India was the last one to accept it. Even though the study was done here in India.'

Though she sounded frustrated, Rani appeared determined to make some difference to healthcare in India: ‘I may not be able to change the whole world, but take one step here. I may not make a revolution, but I can do some evolution using our models, and research.'

Over a period of twenty years, SEARCH has been working to change the care-seeking behaviour of the communities it serves, building a relationship with individuals and leaders. ‘There was a lot of distrust of doctors to begin with,' Abhay told me. ‘Gradually it changed. Fortunately, they have a very good rapport now with our team, because we work with them in two ways – we didn't really impose our healthcare model on them and, for six months, Rani and I used to conduct village meetings in village after village, and every year we organise their collective village assembly, where we ask them what they think we should be providing them.'

‘This hospital was constructed after we had a series of consultations with villagers from nearly forty tribal villages,' Rani added. ‘Where we are now, we get patients from Chhattisgarh [300 kilometres away], we get patients from Bastar, this all is tribal area so it is well located.'

The tribes gave many reasons for not attending state hospitals, but all stemmed from a certain fear of a type of healthcare that was largely unknown to them. They came from small, tight-knit communities; they were afraid of the size and anonymity of conventional hospitals. Because their houses were always built close to the earth, which they referred to as their mother, they were intimidated by multistorey buildings. They were frightened by the white coats and clothes that medical staff wore because it reminded them of their dead, whom they traditionally shroud in white winding sheets.

‘[Our] outpatients' department looks like a home – if you go to any tribal village there is a concept where two or three brothers build together around a veranda. We did that, and have placed an educational counter there – to explain about nutrition, about the medicines, and how to take the doses,' Rani explained.

‘And they said that in most hospitals the conditions are such that it's “patients
andhar
,
rishtedar bahar
”. That means that the patient is put inside the ward and the relatives have visiting times. “And we feel very insecure,” they say. “The doctors and nurses come only once or twice a day, so we feel lost in the hospital.” Someone even said that in this hospital, “because you have plenty of space, give us space – we'll bring our own material and we will construct our own huts”. And so we built the cottages for them here. We also have a pharmacy with cheap medicine … about a third of what they would pay elsewhere. Otherwise the prices are very prohibitive for poor patients.'

Rani also told me a rather lovely story, of one of the tribal assembly members, an educated man who suggested that the camp should host a ‘wisdom bank'. He told her that as their scientists had computers, when the tribals came they would benefit from being exposed to the modern technology. In exchange, he asked Rani to deposit all their knowledge and traditional wisdom into her computers. Rani did that – for example, she told me of the deep knowledge tribal women have about trees. Almost like personal relationships, they addressed different trees as though they were family members; they knew their practical and medicinal uses. Rani collected these and other stories. As the tribal elder had said, there was a lot of traditional wisdom and knowledge. But because there was no traditional process of recording it, all of it could die with them if it were not documented.

The tribals also named the hospital – they told Rani that the hospital should be named Maa Danteshwari Davakhana (literally, Medicine House of the Tooth-Goddess, who was an incarnation of the goddess Parvati, wife of Shiva). Maa Danteshwari is the supreme mother goddess of the Gond community that the camp served, and a temple was placed at its entrance. When Rani dug deeper into why the tribal people wanted the temple to be placed there, they replied that in modern hospitals, doctors think they are the gods. But faith in their goddess had an equal importance to them in their healing. ‘The inauguration of the hospital was done by the main priest of the group of sixty or seventy villages,' Rani told me. ‘In that inaugural speech the tribal leader said that this hospital does not belong to the prime minister; it doesn't belong to the president of India, this doesn't belong to Rani Bang, it is our hospital. And every year we have that tribal assembly still.'

Before I left, I walked around the expansive forests in which the hospital, uniquely modelled as a tribal village, was built, and I spoke to some of the patients who sat outside their huts, or around the communal veranda. They looked completely at home. As I sat next to a woman under a tree, she began telling me how much she liked this hospital compared to the government-run institute in Gadchiroli town. ‘This one is further for me,' she said. ‘But I prefer it here a lot. Before, I used to go to our local doctors if I had an infection or a fever. They used to give me tablets and one or two injections, but they never worked, so I came here. At the government hospital they will treat us, but we don't get well. I like the doctors and nurses here. And I don't know why, but here, the treatments work.'

8

Rewiring the Brain

‘
WE ARE STILL VERY FAR
from mimicking the capabilities of the human brain. Our brain can learn entirely on its own, it can recognise objects in the world. I'm seeing you now the way you are now, but I can still recognise you if you were in a different light or your face was turned at a different angle. In order to really recognise your face, a computer would depend on the same image, the same angles, the same lighting. We don't know how the brain achieves this. And we are nowhere near an answer.'

From his office at the Massachusetts Institute of Technology, via Skype, Professor Pawan Sinha patiently gave me a crash course in artificial intelligence. I'd found him through an article in
Wired
magazine which gave examples of how computers can get things wrong that most humans would find simply incredible. In an airport in Manchester, for example, electronic immigration gates opened for a couple who'd mistakenly swapped passports. I thought about the strictness of passport photo regulations: no smiling, no glasses, a plain, light-coloured background, the stipulations for how to frame your face in the photo. None of this, it turns out, is for the benefit of immigration officers. Instead, it's for cameras linked to advanced computing technology, to give them their best chance of achieving something even a baby would be able to do instinctively. Like most in India and the world these days, I am rarely detached from my smartphone, laptop or tablet, happily using all the apps I can get my hands on and yet grossly ignorant of the nature of engagement with our favourite technologies. I'd rarely spared a thought for how dumb our smart tech might be, compared to the three pounds of fatty tissue we carry around in our heads.

Talking to Pawan, who had trained as a computer scientist in India before studying neuroscience in the States, it wasn't hard to see why he'd been IIT Delhi's top graduate in his year and recipient of Barak Obama's Presidential Early Career Award for Scientists and Engineers – the highest scientific honour bestowed by the White House. During our conversation, I felt as though my IQ was progressively elevating – if that sort of thing were possible – while at the same time surprised by his disarming humility. Despite being the creator of a medical and neuroscience project in India that has already offered an answer to a 300-year-old riddle about human intelligence – how our brains integrate information from our senses – Pawan made the time to talk to me at length, patiently explaining what he was discovering through this pioneering work.

One day in 2002, Pawan told me, while on a visit to his father, he left the family home in west Delhi for the day. By the front door was a pot of coins – money his mother always kept there for when she was going out, to give to those who needed it. Pawan's mother had passed away, but when he saw that his father had kept the pot, he scooped some money up on his way out. It was winter, when the Delhi air thickens with freezing fog and the temperature can struggle to get above ten degrees centigrade. From his car, Pawan noticed a woman begging. When she came over to him he saw two small children with her, around six or seven years old. ‘They were barefoot, dressed in rags,' he told me. ‘And it was
bitterly
cold.' As he gave them the money, he noticed the children's eyes. Both had cataracts, a clouding over of the lenses which causes blindness.

‘I had always associated cataracts with old age,' Pawan said. ‘I was so shocked that I tried to learn as much as I could about this. I began looking into the statistics of childhood blindness.' The numbers, like the woman's two blind children, also came as a shock: around one in every hundred Indians is blind, which adds up to between fifteen and seventeen million people. There are varying estimates of what proportion of these are children, with the largest assessment standing at 700,000. These are – though terribly sad – relatively small numbers in the context of India's total population, though the size of the figure is probably because half of all children born blind in India die before their fifth birthday. For the survivors, the cycle of poverty was almost guaranteed. ‘Less than ten per cent of them will get an education,' Pawan said. ‘And less than one per cent of them will be employed when they reach adulthood.'

It is particularly disturbing to learn that nearly half of these children had blindness that was treatable or preventable. For example, before 2009, India had no MMR (measles, mumps, rubella) vaccination programme, a basic childhood precaution found even in many sub-Saharan countries. When unvaccinated mothers contracted rubella, their babies were at risk of congenital rubella syndrome, which increased the likelihood they would be born blind. In young children, poor nutrition and diets deficient in vitamin A resulted in scarring of the cornea – the transparent dome-shaped ‘window' that covers the front part of our eyes like a glass case on a watch and without which we would be unable to focus properly. Add to that the effects of environmental pollutants like lead and nickel in the water supply, premature birth, congenital cataracts, eye infections and the fact that all of these conditions will quite likely be missed because India has only one ophthalmologist for every 100,000 people. And that's just in the country's cities: seventy per cent of those who are blind, Pawan told me, live in rural villages. Easy access to healthcare is why we don't see children with cataracts in the USA and Europe: not because it doesn't happen – just short of three children in 10,000 are born blind in these nations, compared to just over eight in 10,000 in India – but because it's picked up and corrected in early infancy, something that was not happening on the subcontinent. The World Health Organisation's statistics say that approximately ninety per cent of visually impaired people live in developing countries.

‘I returned to India after that,' Pawan continued, ‘and visited a few places, in Uttar Pradesh, near Calcutta, in rural areas. I got to see how truly terrible the situation was. I was thinking of starting a personal initiative, but I realised I couldn't really help that many children on an academic's salary. Then I thought that, if I could tie it to the study of visual learning I was undertaking here [Pawan was at that time investigating how the brain recognises objects, scenes and sequences], I could tap into far greater resources. MIT was remarkably supportive. They saw the merit in this global impact.' Pawan also got the United States Department of Health and Human Services' National Institutes of Health on board to help with research staff salary costs. In addition, he secured funding from several charitable foundations and individuals in the USA and in Delhi, money which went towards paying all costs for the screening, treatment and surgery of any child who needed it. It was the start of Sinha's Project Prakash.

Project Prakash – named after the Sanskrit word for light – started its work in the rural population centres of India, within some of the most densely populated states, Delhi's close neighbour Uttar Pradesh in particular. Uttar Pradesh is huge. If it were an independent country, it would be the world's fifth most populous, with around the same number of residents as Brazil. Pawan's aim was to bring vision to blind children and, in doing so, to illuminate some of the deep questions of science. In particular, the project explores one of the greatest mysteries in cognitive science: how our brains are able to recognise people, places and objects fast and accurately and why we have largely spectacularly failed to get machines to do the same.

‘My background is computer science,' Pawan told me. ‘I moved somewhat later into neuroscience. But that computing background is what propelled me to think about the mechanisms at work in our brains. How does the brain make sense of the visual world after these children gain sight? There's no explicit instruction to tell them, “That's a face; that's a chair; that's a glass.” So how is the brain able to organise the world into distinct objects? That's an important question – how do we organise our sensory inputs – what are some of the important cues for the brain to do so?'

I was fascinated by the way Pawan had set up a project that provided universal benefits for everyone involved: children with visual impairment got treatment and the scientists got detailed studies of the human brain in the process of learning to see, which in turn could have enormous benefits for the study of artificial intelligence. The information gleaned from the project carried benefits previously unavailable to researchers: before, studies had largely employed non-human subjects (predominantly kittens). Studies of how vision develops can also be done with young babies, as their brains and eyes get used to the visual world, but there are drawbacks: babies, of course, cannot understand a researcher's questions and respond, but they also find it hard simply to stay awake. Project Prakash was doing the same experiments, but with older children and young adults, who were able to discuss their own impressions and experiences clearly and in detail.

Despite this, there were many unknowns when Project Prakash started out: how to find children in rural India who needed eye surgery, how to provide them with the correct care when they were found and then, given the scale of the need and the size of the country, how to provide them with the best follow-up care. Even if they managed to solve these problems, there was no guarantee that correcting the sight of the children would provide the data they needed: these children were no longer infants and nobody knew for certain whether at age seven (or fourteen, or eighteen) a child would be able to recover sight, even if the apparatus in their eyes were to be made functional. Would the brain be able to process the information coming in from newly functioning eyes, or would years of darkness have put a stop to that?

Pawan wondered about this at length. Even though his proposal was well intentioned, he had to ask whether, for children like the two he had seen hanging on to their mother's ragged sari that foggy winter day, medical help would be coming too late. After all, that was exactly what previous studies in animals all suggested: the 1981 Nobel Prize was even awarded to two researchers, David Hunter Hubel and Torsten Nils Wiesel, who had described the dramatic negative consequences on brain development of kittens when they were deprived of vision. I asked him why he persisted anyway, where others would not have bothered.

‘Good question,' he said. ‘As I was looking at the data on the critical periods in early life that required intensive use of the eyes and visual brain circuits, I realised there were lots of caveats you had to keep in mind. Most of the animal studies looked at blindness in one eye, whereas these children had grown up with visual deprivation in both. Although it's surprising, we know that depriving vision in one eye has worse consequences for that eye than if both eyes had been deprived together. Whether sight could be acquired after treatment late in childhood was still largely an open question … but there was enough ground still to explore.'

We spoke for some time about the education of blind people, their health and prospects, his experiences so far and what the future might look like. Our chat ended only when he had to take a call from the Dalai Lama's office.

In mid-July I travelled to Delhi to see Project Prakash for myself, twelve years after it officially began. In 2003 Pawan had approached the city's Dr Shroff's Charity Eye Hospital in Daryaganj, having heard about its outstanding paediatric facilities and that their doctors would welcome the opportunity to engage in research to learn more about how children's vision develops after eye surgery. The hospital also already had rural outreach programmes. One of the doctors I was going to see was their paediatric unit lead, Dr Suma Ganesh, who had since helped supervise Project Prakash's screening of 42,000 children in Delhi and the rural parts of the states surrounding India's capital city.

Driving in from the wide and leafy roads of south Delhi, en route to the hospital, the short commute to the old city revealed the unmistakable traces of the mighty empires who have ruled India. It is one of the reasons I have always loved this city – a twenty-minute drive in Delhi is also a journey through centuries. Its multiplicity of planned settlements have been dictated by its geography and its politics, sitting as it does between the end ridge of the Aravalli mountain range and the sacred Yamuna River; a place that Afghans, Sikhs, Persians, Marathas and Mughals claimed as their own before the British made it their capital and independent India kept it that way. Still visible in gardens, golf courses and on the sides of main roads are monumental domes and pillars and robust rubble walls, the visible commemorations of the spoils of wars and the will of gods; memorials of love, life and death and the power of commerce, apparent in the souk-like markets and shiny shopping malls.

South of what had once been Shahjahanabad, the Mughal capital, was Raisina Hill, a symmetrical new power centre commissioned in 1911 by the British Raj, with their Viceroy's Palace (now the Presidential Palace) taking pride of place on the Aravalli foothills. There were several advantages to this place, not least the fact that the views from that height were liberally studded with monuments of empires past and the tombs of Mughal emperors, the symbolism of which would not have been lost on the British. The geometric system of roads that took me from the new city into the old were created by Sir Edwin Lutyens, one of the architects of New Delhi, whose first blueprints for a Manhattanesque grid-plan were vetoed on the grounds of impracticality, for they had failed to consider the city's eccentricities – dust storms principally, but presumably also the intense summer heat that rises above forty degrees centigrade. Instead, he was encouraged to take inspiration from the grand plans of Rome, Paris and Washington DC – long avenues, classical forms. The Anglo-Indian Rome of his subsequent drafts comprised triangles and hexagons revolving around roundabouts whose spokes were richly verdant, wide, tree-lined streets, designed to accommodate, unimaginably at that time, the burden of a full 6,000 vehicles. Just over a hundred years later, I sat for a while in a traffic jam with some of the city's now nearly nine million registered private and commercial vehicles that at some point jostle for right of way on those same, shaded avenues.