GORAKHPUR, Uttar Pradesh — A terrible disease changed Rinki's life, but that's not the real tragedy. Rinki, 13, could recover, if only her family and the government give her a chance.
She was five years old when encephalitis landed her in the Baba Raghav Das Medical College, the largest government hospital in Gorakhpur, for two weeks. She fought for her life and survived. Four years later, she suffered a relapse.
Today, Rinki is living with crippling mental and physical disabilities that often follow encephalitis, a deadly inflammation of the brain that kills hundreds of children every year in UP. Painful seizures and convulsions continue to wrack her body about once a month.
Wiping the saliva from Rinki's mouth, her mother Ramvati says, "She needs help for everything now. We have to take her to the field to defecate. There are times she doesn't realise she has soiled her clothes. Sometimes she removes her clothes before others. Things are becoming more difficult as she grows up."
Yet, disease and disability have not been able to beat Rinki's spirit. There's never a dull moment around her. When her father rebukes her for spraying water on guests, she disarms him by jumping into his lap. Even as she struggles to keep her eyes open, Rinki strikes a pose and smiles for the camera. And because Rinki can no longer speak, she laughs the moment away.
'Worse than death'
Her father Ramesh works as a manual labourer, earning a meager daily wage of ₹200. He says he can no longer afford to pay for her medicines. Without medication, Rinki endures the painful seizures that leave her crying at night.
Her mother Ramvati, 55, doesn't even know of physiotherapy, speech therapy or occupation therapy, things that can make Rinki's life better. "I have no education. My husband is not interested and I am alone in caring for her. He wastes money on alcohol," she says. "I don't know how to help her on my own."
Ramvati's sentiment is echoed by other parents who have been reduced to helpless bystanders in their children's excruciating struggle with encephalitis-related disabilities.
Families use their meager resources in seeking treatment against the life-threatening illness. If the child survives, they don't know what to do with the physical and mental disorders that follow.
In the four decades that the poor communities of eastern UP have borne the brunt of encephalitis, one government after another, at the Centre and state alike, has failed to reach out to them. Almost nothing has been done to enable rehabilitation of children like Rinki.
"Disability is worse than death if you are poor," says RN Singh, a doctor and a prominent health activist in Gorakhpur. "Parents simply don't know what do with their children. Many are eventually abandoned or left alone in one corner of the house."
Disability is worse than death if you are poor.
'Stepping into hell'
Rinki's family lives just a few kilometers away from the BRD Medical College, which was set up in 1969. It handles the bulk of encephalitis cases in eastern UP, receiving patients from the bordering regions of Bihar and Nepal as well.
It is also the only government hospital in eastern UP that offers rehabilitation for encephalitis survivors by way of physiotherapy, speech therapy, occupation therapy and vocational training. But Rinki's family refuses to visit the hospital.
Vikas, Rinki's elder brother, narrates his past experience at the hospital. "I went one day to get a 'disability card' for her. Going to BRD medical college is like stepping into hell. You spend the whole day running from pillar to post. You feel like you are going mad and your work is never going to get done," he says.
We take a doctor from the BRD Medical College to see Rinki at her home. His first reaction is that he'd seen far worse cases of physical and mental disability resulting from encephalitis. Speaking on the condition of anonymity, he says, "She is receptive. I'm not a sure about a full recovery but with the right care and therapy her condition could improve drastically."
With the right care and therapy her condition could improve drastically.
When I insist that Rinki's family should make the short journey to the government hospital, Ramvati maintains that it will be a pointless exercise.
Romal, Rinki's elder sister, speaks on behalf of their mother. "She says that the doctor kept her waiting for the whole day on her last visit and the medicine they gave just seemed to make Rinki worse. She was quiet, she would sleep the whole day and she even stopped laughing," says Romal.
Ramvati has given up on helping her daughter, but nevertheless spends her nights worrying about Rinki's future. "What will happen to her when I'm dead? Who will look after her?" she asks.
"What will happen to her when I'm dead? Who will look after her?"
Staggering numbers need help
Encephalitis was first detected in India in Tamil Nadu in 1955. The first case in Uttar Pradesh was detected in 1978. Since then, the staggering number of encephalitis patients and deaths in UP have rarely made it to national headlines. The conversation on encephalitis disabilities has not even started.
In the past eight years alone, over 81,000 encephalitis cases and close to 11,000 deaths have been reported from 22 states in the country, according to the Ministry of Health and Family Welfare. Topping the list is Uttar Pradesh with almost 30,000 cases until 8 October this year and over 5,000 deaths.
That's more than one death a day in Uttar Pradesh alone.
Malnutrition, lack of clean drinking water and poor sanitation make encephalitis thrive in east UP.
There is no record whatsoever of the number of people who have suffered from physical and mental disabilities after surviving encephalitis. Doctors believe the number to be in the thousands. The dearth of data exemplifies the indifference towards the persisting crisis. At the BRD Medical College, doctors say 33 percent of Japanese encephalitis (JE) cases, which is one kind of the disease, result in death and another 33 percent in temporary or permanent disability.
A paper published by the World Health Organization explains that resource poor countries like India and Nepal lack a standard method for assessing the fallout of JE. "The resulting gaps in knowledge mean that there is often insufficient evidence to drive changes in public health policy," it says.
According to the WHO, the number of patients living with a severe condition after Japanese encephalitis could range from 19 to 71 percent. This means over 7,000 patients in the past eight years alone in India.
Medical experts explain why even the 7,000 estimate is just the tip of the iceberg.
Japanese encephalitis, caused by mosquitoes carrying the JE virus found in pigs and wild birds, is only one kind of encephalitis classified under Acute Encephalitis Syndrome (AES), the term used to characterise any onset of high fever and inflammation of the brain.
Until about ten years ago, JE was regarded as being most prevalent in the eastern part of Uttar Pradesh. Scientists, however, have identified other vector-borne (enterovirus), non-vector borne (bacteria, fungus, toxins, chemicals) and the mite-borne scrub typhus as causes of non-JE cases.
There is even less consensus on the extent of disability caused by these non-JE varieties of the disease, according to Mahima Mittal, head of pediatrics at the BRD Medical College.
"We treat them and we send them away. We have no dedicated machinery to follow up. This means we don't know the graph of the disability, whether it increases or decreases in JE/AES cases," she says.
"The few who returned to the hospital are cases of physical disabilities and obvious behavioral changes. A child used to be normal but is now either very moody or gets angry and throws tantrums. Mental disorders are ignored. There is also a gender bias. We see parents bringing more boys than girls especially when it comes physical disabilities," she adds.
There is also a gender bias. We see parents bringing more boys than girls especially when it comes physical disabilities.
"You can judge for yourself"
There is a human tragedy unfolding in the encephalitis-hit communities of eastern UP, made worse by a distressing degree of government apathy.
One has to look no further than Gorakhpur, the constituency of Chief Minister Yogi Adityanath, to discover what doctors and activists describe as the "reality".
In Gorakhpur, paramedics tasked with rehabilitation are paid after lengthy delays, sometimes as much as two years. They are psychologists, physiotherapists, speech therapists, audiologists, prosthetic engineers and occupational therapists that were hired on contract by the Central government after the Allahabad High Court in 2006 demanded action to counter encephalitis disabilities.
In Gorakhpur, paramedics tasked with rehabilitation are paid after lengthy delays, sometimes as much as two years.
In her own words, Anjani Kumari, who has worked as a clinical psychologist at the BRD Medical College for seven years, is "desperate to get out."
Anjani and the three other therapists at the Physical Medicine and Rehabilitation Centre have not received their salaries for 31 months as of September 2017. "We are all desperate to get out. The only reason we are working here is because there is no other option," she says.
Dejected, Anjani wonders why they are treated with such apathy: "We are supposed to work with the disabled and you see how we are treated. You can judge the value given to our work."
The two units tasked with rehabilitation at the BRD Medical College, the PMR Centre and the Manovikas Kendra, have for years operated without doctors. No doctors apply, thanks to the extended delays in payments.
The PMR Centre is attached to the Orthopaedic Department of the BRD Medical College. It was set up by the Central government in 2011 for the rehabilitation of persons suffering from encephalitis-related disabilities. The Centre funded the unit for five years, expecting the state government to eventually take over.
Ashok Yadav, head of the Orthopaedic Department at the BRD Medical College, has recently written a letter requesting for three doctors to be assigned for the PMR Centre.
When asked if rehabilitation was a priority at the government hospital, Yadav did not give me a straight answer. The doctor merely pointed out that the PMR centre was not even an independent department but just one unit attached to the Orthopaedics Department, operating without a doctor and with an unpaid staff.
"You can judge for yourself," he says.
Data collected from the PMR and the Manovikas Kendra showed that the number of encephalitis patients visiting these places has steadily declined.
DK Srivastava, who heads the Department of Community Medicine at the BRD Medical College, spoke candidly about the state of rehabilitation.
"The little bit that happened was under the pressure of the Allahabad High Court, but it was only tokenism. There is no unified system to help those disabled. Frankly speaking, nobody cares and nobody wants to look after the disabled," he says.
The most telling example of the government's apathy is how few encephalitis patients have received compensation.
In 2012, the Akhilesh Yadav government had announced that the families of those who died of encephalitis would receive ₹50,000 as compensation and persons suffering from disabilities would receive ₹1 lakh.
The number of people who received compensation for disabilities in the four worst-hit districts of Gorakhpur, Maharajganj, Deoria and Khushinagar dropped from 25 to 8 from 2014 to 2016, according to the data provided by the district authorities. In the past two years, not a single person in Gorakhpur has received compensation for disabilities.
Just a half-hour drive from Yogi Adityanath's temple
Rinki's village, on the outskirts of Gorakhpur city, is home to Hindus and Muslims who take pride in their peaceful coexistence. Most of them work as daily wage labourers, earning ₹200 every day.
Muslims live on one side of the village, across from the Nishaads and Kapariyas who have traditionally worked as boatmen and clothmakers. When asked for directions to Rinki's house, the villagers say, "go to the side of the Harijans".
Her family had painted their thatched hut white with brown diyas on Diwali, last year, but not a great deal about the place has changed since Rinki was first struck down by encephalitis. They still don't have a toilet. The women go to defecate in the fields.
Ramvati is not even aware that poor hygiene and sanitation was linked to encephalitis.
Her husband chimes in: "Toilets are expensive. The ₹8,000 that the government is offering isn't enough. We cannot afford to build one," he says.
At least five children have contracted encephalitis in this one village, which is not only close to the BRD Medical College but also just a half-hour's drive from Goraknath Math, the temple led by Yogi Adityanath.
While Adityanath's temple complex is squeaky clean, Rinki's village appears to be sinking under the weight of its own filth.
While Adityanath's temple complex is squeaky clean, Rinki's village appears to be sinking under the weight of its own filth.
Thick sludge and garbage choke the streets and drains that run across the village. Mosquitoes cover pools of stagnant water like a thin film. Human and animal feces litter the surrounding fields.
Even though the village falls under the Gorakhpur Municipal Corporation, villagers say sanitation workers almost never come to either clean or for fogging. Instead, the residents ward off mosquitoes by burning a mixture of cow dung and neem leaves in the evening and by using mosquito nets at night.
Residents blame their neighbours, Kuddus Ali, the village chief, and the government for the unsanitary conditions in their village.
Asked about the appalling conditions in the village, Ali says, "There are 24 cleaners who are assigned to ward number seven but no one shows up to clean. I've been phoning the nagar ayukt all day but he ignores my calls."
It was here, while campaigning for the 2014 general election, that Modi had famously declared that he had had a 56 inch-chest.
The villagers last saw heavy-duty cleaning when Narendra Modi, now prime minister, had given a speech in the field that is now littered with rubbish and feces. It was here, while campaigning for the 2014 general elections, that Modi had famously declared he has a 56-inch chest.
Encephalitis, however, has never been an issue in any election. This year, there have been almost 2,000 encephalitis cases and 217 related deaths until August alone.
Where they turn away patients with disabilities
It is eleven in the morning on a Saturday, a working day for public offices in UP, but the District Disability Rehabilitation Centre (DDRC) in Gorakhpur is closed. There is a padlock on the entrance of its orange-coloured building.
Another 20 to 25 minutes passed before Ayodhya Prasad came by on his cycle. Prasad, who makes assistive devices for persons with disability, says it was rare for the paramedics who worked at the DDRC to show up.
The DDRCs were set up by the Central government to make it easier for people to access rehabilitation services closer home instead of travelling to the big hospital in their region, such as the BRD Medical College. The DDRC in Gorakhpur, a kilometre away from the government hospital, is barely functioning.
We insist on speaking to his supervisor regarding the operations of the DDRC. Prasad makes frantic phone calls to Umesh Chandra Kiran, a prosthetics engineer and the supervisor of the centre.
Over the phone, Prasad says, "There is a madam from Delhi who has come to see the office but the office is closed. It will take at least half-an-hour for the keys to come."
When Kiran finally shows up, the first thing he says is that paramedics at the DDRC had not received their salaries in two years and that he prefers to spend his time at his private practice. He echoes Anjani's sentiments: "We only work here because we are desperate for a job."
We only work here because we are desperate for a job.
Neither Kiran nor Ayodhya conceal the sorry state of affairs at the DDRC, but it is the silence filling the office in the middle of the day that is truly revealing. There were no patients and no paramedics in the room. While the desks are bare, except for two nameplates, the shelves are crammed with old rags and artificial limbs gathering dust.
The handwritten entries made in a logbook show only six encephalitis patients had come to the DDRC in 2015 and two in 2016.
Kiran says the DDRC had for several years not received the funds to purchase hearing aids and wheelchairs, and buy material to make other assistive devices such as calipers for walking.
The DDRC was turning away patients.
Ayodhya says, "All I have done for the past few years is to repair the old devices that people use." Kiran adds, "Two children had come by in August to get calipers but we told them to go back."
Two children had come by in August to get calipers but we told them to go back.
"I told you they won't get in touch"
When the doctor from the BRD Medical College meets Rinki at HuffPost India's request, he makes two promises: that his colleague will personally attend to Rinki if she visits the Manovikas Kendra the following Saturday, and that he would pay for Rinki's sister to finish her high school education.
The second promise comes after Rinki's sister, Romal, digs out a yellow booklet from an "encephalitis camp" that her family had attended at the government hospital in 2014. She is the only one in the family who can read the writing on a piece of paper that was tucked inside the booklet and had gone unnoticed for the past three years. "Visit the Manovikas Kendra at the government hospital on any day except Sunday," the note says.
Romal, who had studied till Class X, has always wanted to finish high school. Despite her pleading, her father says he cannot afford the nominal school fee charges in a public school.
On the day the doctor came to examine her sister, it was Romal who wrote down the doctor's instructions and took down his number.
Two weeks on, Rinki's family has not taken her to the Manovikas Kendra and they did not contact the doctor with an update on Romal's school situation.
When I ask Romal why the family did not meet the doctor's colleague, she says, "My mother decided there was no point. They won't take her again."
And why is she still not going to a school when the doctor is willing to pay the fees? "My father said no. He does not believe the doctor will pay. I tried to convince him but he did not agree."
The doctor confirms not hearing from Rinki's family. "I told you they would not get in touch. The realities are more difficult than we can ever imagine," he said.