A Boy named Jason- Story of the Endosulfan victims in South Karnataka

The inside picture of what goes wrong with the endosulfan victims in Dakshina Karnataka.

A few kilometers of walk up the slope of a hilly road surrounded by coconuts, palm trees and cashew plantations in Puttur lives Jason Prem. Celine, Jason’s mother stood right outside waving ‘hello’. She welcomed us with a warm smile and had introduced me to Jason. Jason was lying on the porch outside his house. His mother told him to get up and say hello. Although Jason couldn’t greet us with a hello, he managed to get up and sit and come inside to join us.

Celine and jason poses for the picture

Jason entered the living room and could not just stay still and climbed the windows, banged the Almira doors. Their living room painted blue had an altar, the Prem family are the believers of the Christian faith. Pauline, who is a good family friend to the Prem’s and also a fellow church goer said, “Every Sunday whenever they go to church, they have to take turns and go to church. Someone has to be with him at all times.”

Their house has wooden doors and wooden cupboards and shelves all around and Jason banging them, with his legs and sometimes even his head. They cannot risk to keep any glass items in their house as Jason would certainly break them as well. When he goes to school, he cannot stay still and his teacher has to make him sit in one place, and usually have to tie his hands to the chair. He cannot sit still in one place, he hovers around all the time. He cannot tell his mother when he is hungry, and when he is and if he does not like the food he spits it out. That’s the only way Jason can express his emotions. Jason who is 12-years-old with severe defeatism, which means that is brain is dysfunctional or actually popularly called the concept of ‘brain death’.

In the taluk of Puttur, there are 1492 people affected by Endosulfan and identified with specific illness in Endosulfan sprayed areas. According to the district Natural Resources Data Management system (NRDMS), 3618 people are affected all throughout Dakshina Karnataka, which is the south of Karnataka. Despite a large number of victims affected by Endosulfan in Dakshina Karnataka, there are only two-day care centers, that caters to the needs of the victims. The center is designed for the Endosulfan victims in these areas, to help them in many ways. They provide them lunch, monthly pension, physiotherapy and a little bit of education. One of the centers in Koyla in Puttur district, the center in Koyla only caters to only 42 victims. The center cannot be accessed by all the victims because the center is located in a deserted location, where many victims cannot come and get access to. Only those who live in and around that area are able to have access to the centers. “We cannot provide transportation for the victims who live far off. The patients that I pick up are only within the distance of 20 kilometers”, says Jayaram, the driver at the center who picks up and drop the victims who are unable to walk and also the victims who live a little far from the center. The government provides transportation for these victims. The other center in Kokkada, Belthangady, serves only 27 victims. Due to a few problems in the past few years, the center in Kokkada was shut down.

Bal Bhavan Kendra in Koyla is an old sericulture center surrounded by trees but you can barely see any people around that area. The yellow walls that have not been painted for a long time, the sericulture pictures hanging all around, in the physiotherapy room and outside. The old, unused physiotherapy machines in the corner of the room. Makes the center look more like an old shed or rather a stable for horses. “They don’t really work and are not suited for the patient’s needs”, says Bijoy, the Physiotherapist at the center. The staff there say that “we are just so used to the old center now, the unpainted dingy walls, the rats, the snakes. Before the kids used to get scared of the rats and the snakes but now we know they won’t really harm us anymore.” This is the condition that these victims live in each and every day. Even though, the government has provided these victims, a center where they can get the help they need and free meals. The gesture still does not look genuine enough.

The patients at the only endousulfan centre in Putture supported by the government.

During 2016-17, a total amount of Rs. 4497 Crores is provided for Woman and Child Development and Empowerment of Differently Abled and Senior Citizens Department, according to the Budget 2016-17. The monthly pension is being provided to Endosulfan victims ranging from Rs. 1500 to Rs.3000 based on a percentage of their disability, in the Budget 2016 – 17.  The center receives funds from the central government but, Mrs. Pramela Rao who is the Director of Seva Bharti Trust in Mangalore claims that “The center is solely run by the money that is allotted to each victim, per day one victim is paid Rs 216 given by the state.” She adds to that saying, “The center has to manage all the things like the transport, the food, the salaries of the employees, everything is covered by this amount.” said Mrs. Rao who is in charge of the center and takes care of all the funds and where about’s.

The Bal Kendra Bhawan(the endosulfan center) have two special teachers, one physiotherapist, one driver and a few other helpers said Namita who is the Project Coordinator for the past 4 years at the center in Koyla. Namita feels that “The kids have developed a lot mentally and socially, they can now communicate better with people. The only problem that lies is that the teachers are not very well trained. We need the kids to develop their skills even better but we have a shortage of good staff here.” She also added that “There are no full-time centers in the whole of Karnataka, which is sad cause it is much needed knowing that some family members are unable to take care of these victims.”

Dr. Bijoy with his new physiotherapy machine and a patient.

Dr. Bijoy Subash Chandra, Physiotherapist is someone who really deeply feels for these kids and is constantly trying to help them out for them to recover. He said that “There hasn’t been any equipment that helps in positioning. The only treatment for these victims is positioning of their bodies and exercises like stretching and other muscle exercises.” He also complained that “There are no psychiatrist or special teachers that would help these kids to develop their skills. The nurses here are not well trained and don’t know how to handle the patients.” The patients also need a bigger place to exercise and a full-time center that could cater better to their needs, says the doctor.

Celine, Jason’s mother used to work as a nurse in a government hospital but had to quit her job to take care of Jason. She said, “At least one person needs to be around him and take care of him.” Celine tried everything she could to help him get better, to help him to walk and talk. He called his mother ‘Amma’ before in the early stage but after a few years, he couldn’t even barely talk. The family blames the acupuncture treatment that someone recommended. After the acupuncture, his situation got even worse. He had fits and everything that went inside his mouth came out at the same time, he couldn’t eat properly for a few months. Jason’s grandmother always carries him around and as he is growing older, he is getting heavier. Her feet are swollen carrying him around all day long, chasing him, trying to make him sit in one place.

Celine has two children including Jason, the other one is a 7-year-old girl who is not affected by Endosulfan. Celine also has an elder brother too who is a victim of endosulfan. He was recently admitted to a government hospital in Mangalore and brought back since he was not feeling well there.

Celine, Jason and her youngest daughter.

There are much more like Jason, who are either paralyzed mentally and physically both. The fear of the word ‘Endosulfan’ paralyzes, handicaps many physically and mentally. The word that many of us have just been hearing repeatedly for many years. It affects generations after generations, one after another. The use of the spray banned in the late on May 13, 2011, when the Supreme Court in India passed an interim to ban the product. After they found out the number of people affected in Kasargod, Kerela. The product was also banned all around the world as many countries joined hands to ban the killer pesticide. The product was banned in Australia in 2010 because it affected many tropical fruits and vegetable growers as well as the nut and cotton farmers. “Endosulfan is still sold openly but now in another name, but the ingredients are the same and have the same effect in human body”, said Bijoy.

During 2001, the Centre for Science and Environment (CSE) released shocking results of its laboratory analysis on samples brought from Padre village in Kasaragod district, Kerala, where a lot of unusual diseases related to the central nervous system have been reported, especially among children.The health and ecological hazards caused by exposure to endosulfan have been a global concern. A CSE did a case study on a woman who had been affected by the endosulfan. The woman’s blood contained 900 times the amount of endosulfan that is permitted in water– CSE could not find any permissible limit for blood, meaning that it is unlikely that there is a minimum level at which the pesticide would not harm the human body. The woman’s elder son Kittanna, 21, has cerebral palsy; the younger son Sridhar, 16, is mentally retarded reports CSE. According to the CSE, many scientific studies show that endosulfan can affect an unborn child in the womb, among the other health effects. Several countries have banned or restricted the use of endosulfan, though the pesticide is still not banned in India and still sold in different kinds of names with the same ingredient.

The Supreme Court in January 2017 ordered the Kerala government to pay Rs 500 crore within three months to over 5,000 people who lost family members or suffered deformities and other health complications from the use of endosulfan pesticides.

Although the Centre and the Kerala government were reluctant to stop the use of the pesticide because they deemed it effective against pests, the court had in an interim order in 2012 banned its use. The ban is still in force. Now, the matter comes up for hearing in the court after nearly two years, reports Telegraph in a recent report.

There are many who stand against the pesticide, one of those people is Janardhan Kesargadde who is an activist and poet, involved in educating the farmers on various issues like pesticides, GM crops, etc. Kesargade strongly opposes the use of the endosulfan and other chemicals and believes in organic, natural farming techniques. He says that “Growing up in Coastal Karnataka, where the area is badly affected by endosulfan in Dakshina Karnataka, Chikmagalur district, and Kasargode. I have seen people around me who cannot live a normal life because of their disabilities and see that makes me very disheartened.” Kesargade further said that “ Endosulfan is banned in Karnataka but still in use in other states, but the chemicals that belong to endosulfan family is still in use in Karnataka and Kerela, the farmers might not be well aware of that fact.”

The flashbacks of the time when she was robbed out of her normal life, still haunt her and bring her back to her situation now where she cannot walk. Pragati, 19-years-old who was initially a lead the life of a normal child, she could walk, play, help out her mom with chores at home, makes crafts. But when she turned 9, her she suffered from a muscular defect due to the later effect of Endosulfan in her body. After that, her hands and legs stopped working as well and she couldn’t live the life that she used to live. Pragati, a smart sharp young lady, who just finished her 10th standard and was about to go into the 11th standard. Could not continue her school as the classes were shifted to the first floor rooms and it was getting hard for her to climb the stairs. She said, “I asked my school to shift the classes to the ground floor rooms or assist me with some sort of help but they denied me and I just had to leave. All I want now is for the government to help me continue my studies”.

Unlike, the others in the center who are fully affected by the pesticide, Pragati is the only one who is affected in her arms and her legs. Even though, she was not born with any deformities but being surrounded by the pesticide and the fact that it is still used affects many like Pragati. “Pragati makes beautiful handicrafts with paper and stick, she uses her spare time and still wants to be able to do something productive with her time”.

However, in Kokkada Taluk of Dakshina Karnataka, a man who has been blind since childhood named Sridhar Gowda. Mr. Gowda is an activist for different social causes but has his special interest in the people who are affected by Endosulfan. He has filed 3200 cases against the government, asking for the facilities and fighting for the rights of these victims. He talks about the center in Koyla with great distress and says that “The government pays around 25-30 lakhs every year to the center but 70 percent of the money goes to the transportation cost. Which is basically picking up the victims from their homes and then dropping them off at the school and then dropping them back.” The center has been heavily criticized by the media, us and many people but there have been no changes. Gowda says that there should be ‘Skill development’ for the patients there. We have been reasoning with the government and trying to tell them how skill-development could work miraculously for the victims. But, the government has just been very ignorant about it all throughout these years.

We protest we fight for the rights, we fight for the physiotherapy machines. There’s still a long way to go for the improvement of the kids. Only a few machines won’t care for all the children and then what about the ones that cannot come to center? The bed-ridden victims, who cannot, no matter how can be taken to the center. They need personal care, personal treatment. I feel deeply for the bed-ridden victims. 92 villages are affected in total says Gowda. Out of which there are many who are bed-ridden and have no sort of treatment for them. Recently, he says there was a family in the village of Parade, who had a kid named Shashank, he was bed-ridden, he could not move, could not eat. His father lost complete hope in helping his own kid and committed suicide.

In 2016, four members of a family, including two endosulfan victims in Belthangady taluk committed suicide, the CM told the TOI: “We have been distributing compensation to endosulfan victims. It is unfortunate that they have committed suicide. We have been distributing stipend to them. They should not have taken the extreme step.”

Dr. Justy Antony Chiramal, Senior Resident at the Epidemiology and Public Health, who has treated many Endosulfan victims who tried to commit suicide in Christian Medical College in Vellore and the Bangalore Baptist Hospital. Dr. Justy said that “Most of the patients that came to me were in a very critical condition and needed ICU care, while I was working at these hospitals. The reason that many of them suicided was large because of financial problems, which after they had committed suicide had even increased more.”

She further adds to that and said that “ It’s a vicious cycle, which further pushes them into more poverty. Since the patients brought to the hospital have to be put on ventilators and the cost of the treatment each day is around Rs 3000-4000. By the end of their treatment, they are shocked by the huge bill which usually comes in lakhs. There’s no way out for them unless the government does something.

On the other hand, there are some victims who with the help of education, counseling and proper care have been leading a good and better life. Meha Rai is one of those victims, she lives in the main district of Puttur with her parents. Meha has twisted legs so she cannot walk. Her mother, Mrs. Nayana Rai never thought of her as a handicapped, she always wanted her to go to school like normal kids, walk and talk and learn how a normal kid does.

Meha teaching math to her student.

Meha is now, a graduate who has majored in commerce and is currently doing her Masters in Commerce from the Mangalore University. In her free time, she also gives tuitions to the kids and teaches them math, science, and economics. “I’ve always treated her like a normal child, there were times when I might have sounded harsh to just motivate her but I told her you cannot just sit and do nothing, you cannot just be handicapped, you need to earn a living like a normal kid”, wipes off hear tears and says Mrs Nayana. That statement said by Mrs Nayana may sound a little harsh and also sound like she actually wants her handicapped daughter to go out and earn. The Rai’s are well-off and have a pretty decent living standards, while many in Puttur might not have a car but they do. Mrs. Rai just wants Meha to succeed, she wants her to achieve the unachievable. She believes that physiotherapy wasn’t the only answer to curing her daughter and that there is a better way to cure her disability.

Mrs. Rai is also an active member of the Mahabaleshwara Temple in Puttur. She helps out as many handicapped schools and pays a regular visit to all the endosulfan centers as well.“I want the world to know and spread a message to the parents and families of the in my society that if we empower our kids and educate them they would not be just be handicapped. They will be independent individuals and learn to live and survive by themselves.”, she said. Mehta is really proud of her mother for helping so many people to help them know their rights and helping them to get the benefits that they are supposed to.

While the government fails to provide a center for the other parts of the taluk, Father John who runs a school for the endosulfan victims called “Sarvodaya Special School”. Father John says, “ We started the school in 2014, renting a small building which was run by the donations that I gathered from the church especially for the victims.” Many companies from Bengaluru have donated a van, a few stitching machines, some audio equipment, and toys for the children. But, the school is run by the funds and donation that the Father gets from various sources but now it solely runs on Father John’ own money.

Another similar school in Puttur, which is also run by a Priest of the Bethany Church. Jeevan Jyothi Special School was opened 12-years back by the initiation of Father Anthony and his church. The school has around 100 children and in 2010, the children attended the special Olympics in the US. Father Anthony’ inspiration to open the school was seeing the children who were severely affected by Endosulfan and wanted to be a helping hand in the situation”, he further said.

Jason goes to Father John’ school, five days in a week. Every day, a van picks up each kid from their homes and drops them off at the school. Even though, the school is a great gesture from Father John’ and his church. It still does not meet the needs of a child like Jason, who is usually just sitting in his classroom, not able to grasp anything that the teachers teach. With Jason’s Severe retardation and Citicism, he cannot sit still so the teachers have to tie him up to his chair in the classroom.

Mrs. Pauline, an Anganwadi teacher who has been working in the same Anganwadi near Jason’s house has known Jason’s family for almost 15 years now. “I knew his mother, at the time she was pregnant with Jason as we have to register each and every house who is about to have a baby or has one”, said Pauline. But, at that time she did not have any idea about her kid being affected by Endosulfan. Jason came to the Anganwadi as a kid, we took him in as a normal baby, but as he grew old we could notice a few traits that he couldn’t match up with the other kids.

“In my 30 years of experience of working in an Anganwadi, I got to see many children who as they grew old started having problems with their speech, the way they walked. As Puttur already had many victims of this deadly pesticide. We informed the parents, to consult the doctors as soon as they can.

So, what happens to the victims like Jason or Pragati or even Abhishek who is 23-years-old who still believes that he could have a better future despite his disability. Abhishek believes that, “If the government empowers us, the victims with education and proper facilities, we can do so much better in life.” Abhishek does not want to sit around being a burden to his parents, he wants to live a life of a normal boy and dreams to be a cricketer one day.

In this grave situation you cannot really say much, of what will change for these victims. Would they even be able to live when they wake up the next day? With the need of good doctors in rural areas, Indian rural areas always struggle to get the same facilities as a person who lives in the city does. Dr. Justy says that “No doctor is willing to work in a rural area. Which is where the problem starts.” She believes that the only way to solve this problem would be to up the Health Care system in the country. She recently visited a conference which was conducted by the Public Health Foundation of India. They spoke about how many states in India who do not utilise the funds well, they either return it back or many times misuse. Dr. Justy also believes strongly that the scarcity of good doctors through out the rural areas is leaving the major diseases in these rural areas ignored and not given too much importance. If the government were to improve the conditions of the health sectors and dedicate good doctors in the rural areas, it will make a difference. It might takes year but it will, said Dr. Justy.

The little cute kid (also an endosulfan patient) innocently posing for the picture.