The second point concerned the cash incentives. In 2014 eleven young women in rural Chhattisgarh died after taking part in a mass sterilisation campaign they had been paid Rs1,400 (£14) by the government to participate in. A careless attitude by staff towards incentivised patients was blamed, and the point was also made that, when women who are living in poverty are offered money to undergo a procedure, they are likely to accept whether they want to or not. Photographic evidence of the sterilisation victims made it hard to disagree. These were very poor women who might easily have made other contraceptive choices. As mothers lay dying, their children sat helplessly next to them on the hospital beds, while other relatives sat close by on the floors of those sparsely equipped wards.
Sadly, this was no isolated incident. Over the years, thousands of women have died following unnecessary admission to ill-equipped institutions with under-trained or negligent staff. The issue was further complicated by corruption. Rani described to me how many women who took up JSY’s offer either received no money, or, on the other hand, spent it on things for which it wasn’t intended. Payment was made only to those holding a BPL (Below Poverty Line) card, but, as Rani explained, ‘Actually we see government employees with BPL cards and the real poor – the people who should have that money – they don’t get one. And those who do get paid – that money is supposed to buy food and medicines for the mother and the child, but gets spent on household items. Furniture and other things like that. And so the total purpose is lost.’
The combination of forcing women into hospital and giving them cash incentives also seemed to be having another unwanted side effect: a rise in unnecessary caesarean operations. Abhay thought this could be due to the more intensive monitoring of hospitalised women during labour. ‘There may be several false alarms, and doctors get panicked.’
He also believed that some women were undergoing procedures needlessly for altogether more sinister reasons. Some obstetricians or doctors, aware that their patient will soon be in receipt of a JSY payment, will tell the family that their relative requires an entirely unnecessary caesarean. ‘They say, “This woman is in danger, and an emergency operation must be done. If you pay me three thousand rupees, I can help you.” Of course, every woman in labour looks to the family like she’s seriously ill, so they pay up, even though state hospitals are supposed to provide free care. Some of our own workers have been victims, even though SEARCH is quite a well-known organisation – such payment is still so common that they don’t care.’
I wondered whether Abhay had been overstating the problem but, as I was later shocked to discover, what he had told me was no isolated series of incidents.
More than 800 million Indians have little or no access to modern healthcare, and statistics for 2013 show that there were seventy-two suicides daily by those with illness for which they could not afford to seek help. Some part of the blame must fall at the door of the corruption rife in many state-run hospitals. Sinking into a deep depression over the basic human right of access to healthcare begins to make sense once you realise what an ordinary person – even a pregnant woman – must face. There are innumerable news stories about the desperate facilities and underhand dealings women in labour often navigate: disturbing pictures of rooms full of women on bare metal beds, the ward floor strewn with blood-stained cotton and miscellaneous rubbish, loose wires dangling lethally from the walls. There were stories of payment demanded not only for caesarean sections, as Abhay had said, but also for drugs and bandages, food, gloves, blood tests, examinations – charges were even levied in order for the woman to receive stitches after she’d been cut, or to receive the government benefits she was owed. One couple was asked to shell out Rs500 as the going rate for having had a son delivered, and another woman was charged Rs750 (three weeks’ salary) but died in labour, leaving behind three young children.
Government statistics reveal that, today, nearly eighty per cent of Indian childbirth occurs in hospitals. But, for a programme that has heavily invested public finances over the space of a decade, the pace of improvement has been decidedly leisurely. From 500 deaths per 100,000 women in 1996, to 212 in 2009, to 178 in 2015 – the trajectory of falling maternal mortality is showing a frustratingly steady rather than reassuringly steep decline. Certainly, through JSY there has been no rise in maternal deaths, but that might be due to a number of factors, buffered by the improved economic status, nutrition, education and progressive urbanisation of some rural communities.
Even if women don’t end up on the receiving end of surgical extortion, there are still disadvantages to giving birth in hospital. Hospitalisation is not universally recommended even in Western healthcare systems – the model for this programme. Abhay reminded me of the UK’s National Institute for Health and Care Excellence (NICE) guideline that moving women who have no other risk factors during pregnancy to a hospital for delivery puts them at an unnecessary risk of suffering various hospital-based complications – caesarean section, panic, hospital infections. It was a sound argument. In India, the low-risk BPL women JSY was supposed to protect could well be far better off at home. ‘The advantage of moving to a hospital, if any,’ Abhay said, ‘[is that] there is a facility for blood transfusion and a caesarean section. [But] the WHO says that only around ten per cent of women need an intervention. So for that ten per cent we are moving one hundred per cent of the women.’
‘What about the big dangers, like obstructed labour or eclampsia, that can occur suddenly?’ I asked.
Abhay agreed that, ideally, wherever a woman might deliver, she should have access to emergency obstetric care within two hours. This, though, was a concept very different from moving every woman to a hospital for delivery. A far more practical and, in all likelihood, hygienic proposal would be to allow a woman to deliver anywhere, but to ensure that emergency transport, and timely access to a hospital, are on hand.
‘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 h
ave 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 explain
ing 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.
In the Bonesetter's Waiting Room Page 19
