Endosulfan victims' kin: Uncared by government, they seek daycare for dear ones
KASARAGOD: "All I have got is myself..." reads Bindu Rajan's WhatsApp profile status in Malayalam ('Enikku njan maathram').
The sentiment expressed in the status which is accompanied by three sad face emojis is one that can resonate with single parents and caregivers of endosulfan-affected persons.
Bindu, a single parent and working mother, starts experiencing anxiety when it is 3:30 pm.
At 3:30 pm, the Mahatma BUDS School for children with intellectual disabilities in Periya closes for the day. By 4 pm, the school bus will drop Bindu's son Bithul Raj, a victim of endosulfan poisoning, at Maveli store, a government-run grocery outlet at Periyattadukkam near Periya where Bindu works as a saleswoman.
The next two and half hours till she finishes work feels like two-and-a-half years for her, says Bindu, before going on to describe her daily struggles.
Bithul sometimes pushes down the two-wheelers of customers parked outside Maveli and nearby shops and scratches cars with stones, says his mother. If scolded, he rolls on the mud and wades into puddles.
However, Bindu has no choice but to keep her son with her at work.
Kasaragod district does not have institutional daycare centres for persons with intellectual disabilities.
If left home, he could get into dangerous scrapes. "Once Bithul had placed a hot iron on his older sister’s palm,” says Bindu.
Periya in Kasaragod.
Bindu’s husband Rajan, who worked as a carpenter, suffered a brain stroke and after being bedridden for three years passed away in 2018. Maveli store pays Bindu a daily wage of Rs 575. However, she is only able to make between Rs 8,000 and Rs 10,000 due to the leaves she has to take occasionally to tend to Bithul. In the mornings, Bindu has to hire an auto rickshaw for Rs 160 to take her son to school.
Although Bithul resists going to school, he becomes calm and participates in activities there. In the evening, the duo take a bus home from Maveli store. Cheaper transport isn’t always an option however as Bithul sometimes refuses to board the bus, which then means she has to shell out another Rs 260 to return home in a rickshaw. What Bindu wants from the government is an institution that will take care of Bithul while she is away at work. "This is the least the government can do. I am not asking for money," she says.
The state government has paid Rs 5 lakh to each of the 6,714 victims of endosulfan as directed by the Supreme Court. The majority of them have received the compensation — 14 more affected families are yet to get it. Disbursal is delayed due to legal heirship issues.
Activists and families affected by one of the world’s longest pesticide poisoning saga are demanding that the government provide them daycare centres. They also seek assurances that the victims would be adopted after the caregivers pass away.
On May 30 this year, Vimala Kumar (58), who was working as a cook at a government school in Panathady panchayat, allegedly killed her daughter Reshma R (28), an endosulfan victim, and then took her own life. Neighbours and colleagues of Vimala claimed that she took the extreme step just two days before the school she worked at reopened. She too reportedly did not have a place to send her daughter who has intellectual disabilities when she was away at work.
"There are several single mothers who have shared with me their thoughts of ending their lives because they lack support systems," says K K Ashokan, of the Confederation of Endosulfan Victims Rights Collectives (CERV Collectives), which helps survivors in their legal fight against the government.
in front of the secretariat in Thiruvananthapuram, demanding daycare
centres for endosulfan victims in Kasaragod, on Saturday.
On August 6, the 82-year-old social activist Daya Bai staged a token hunger strike in front of the Secretariat in Thiruvananthapuram demanding daycare centres for endosulfan victims and speciality health care facilities in Kasaragod district. She said she would go on an indefinite hunger strike at the same site on October 2 if her demands were not met.
The painful drag
When Abdul Rahman (32) was a little boy, his neighbours in Chengala's Berka used to remember his father taking him out in a wheelchair to get a haircut or some chocolates.
Today the 61-year-old Abdulla cannot help his son to even sit on the bed. The elderly man is frail and looks much older than he actually is. As he pushes wheelchair-bound Rahul from one room to another, he says, "It's exhausting”, while wiping away sweat on his forehead.
Abdulla has barely been able to leave the house since his wife’s death five years ago as Rahman constantly needs his father around. Abdulla says he isn’t too worried about his son.“As long as I am alive, Abdul will be fine," he says.
Abdul has received endosulfan compensation but it is evident that the future still seems bleak for him.
'With four brothers to take care of, there's no me'
Beefathima (32) last ventured outside her home at Edneer in Chengala grama panchayath three weeks ago. That was to take her77-year-old father Aboobacker N A to hospital after he suffered a paralysing brain stroke. Her relatives had pawned their gold jewellery to raise Rs 1.25 lakhs to get him out of hospital. Now, he is bedridden, needing Beefathima's constant assistance and care.
Beefathima's plate was full even before her father’s paralysis. She has been taking care of her four adult brothers who were born with intellectual disabilities and identified as victims of endosulfan.
Abdul Hameed (45) who is the oldest can manage to utter a few words.
Abdul Rahman (34) cannot speak. He keeps hovering around Beefathima with his gummy smile.
Ahmed Kabeer (30) and Abdul Khader (28) attend the BUDS School in Bovikkam during the day and return home by 3:30 pm.
A recent rule prohibits BUDS schools from admitting persons above 18 years of age. However, the school continues to permit Ahmed and Abdul as they were enrolled in the school prior to the ruling. When asked how she takes care of her brothers,she smiles and says, "It's easy. I don't have to tell them anything. They do whatever they want. I just have to pick up after them.”
The monthly pensions the four brothers receive are the family's only source of income. Every month, they get Rs 1,600 as disability pension and Rs 1,700 as endosulfan pension. Although endosulfan victims with intellectual disabilities are entitled to a pension of Rs 2,200 every month, the government has cut Rs 500 from each of the four brothers in this family, said activist Ambalathara Kunhikrishnan.
in Chengala panchayat of Kasaragod.
Beefathima says they have not received their endosulfan pension amount for the past four months. "We manage with the pension not because we don't have other needs but because we don't have extra money," she says.
When asked if she wanted to marry, she says marriage is the last thing on her mind. "My parents are aged and are not keeping well. My brothers need me. What wish will have for myself then," she asks.
Beefathima hopes the government will adopt her brothers after she and her father are no longer around. For now, she hopes the government will help her start a cottage business.
Married at 13, now a single mother of three endosulfan children
Maimoona's small unplastered house sits precariously on the edge of a hillock atPanjikkal, which is 3.5 kilometres away from Badiadka on Soolapadavu road. The slushy approach road is too steep and treacherous for cars. Inside, the small living room is almost fully occupied by a six-seater dining table. The showcase above the table is decked with small trophies and mementos. "They all belong to my Ibrahim Badusha," says Maimoona (35), even before she is asked.
Maimoona's youngest son Ibrahim is in Class 10. "He is a bright boy and is good at lip reading," she says. He was born deaf and mute. Bright light is blinding for him as his right eye is blue and his left eye is black. The government has identified him as an endosulfan victim.
Maimoona was only 13 when her mother Mariyamma, a daily wage labourer, married her off to a vagabond in 2000. She became a mother the following year.
The elderly Mariyamma says she did not have a choice but to marry off Maimoona and her two other daughters. “I had to go to work… and I did not feel my daughters would be safe if they were left home alone.”
Three of Maimoona’s five children are endosulfan victims. Her husband who had walked out on her now lives with another woman in Pariyaram.
Maimoona’s oldest Mohammed Rasheed (21) frequently experiences epileptic seizures. He, however, is not an endosulfan victim. Her second son Abdul Razak (20) had to undergo surgery for a leaky heart valve at Kannur Government Medical College in Pariyaram. He too is dependent on his mother.
Fathimath Rihana (18) is Maimoona’s only healthy child.
Maimoona’s youngest Mariyamath Rahila (16) was born with two heart defects. A valve in one of the two pumping chambers was missing. It was corrected with surgery when she was ten years old. She was in Class 4 at the time.
Mariyamath also had a defect in the partition separating the two chambers causing high pressure to form in the blood vessels in her lungs. The higher pressure led to lower oxygen levels in the body, leaving her completely worn out. "She could not play or walk. She would turn blue," recounts Maimoona.
The young mother, who had dropped out of school in Class 2, did not give up hope. Maimoona used to carry Mariyamath to school and would sit with her in class throughout the day, and bring her back home.
Maimoona had to spend around Rs 80,000 at a private medical college in Mangaluru to identify Mariyamath's defects. She did not have money for Rahila's second surgery which would have cost her Rs 3 lakh. After frequent visits to the collectorate, the officials agreed to foot Mariayamath’s surgery bill. The surgery finally happened at the Amrita Institute of Medical Science (AIMS) in Kochi. The child by then had turned 13 years old.
when she goes to work in Badiadka panchayat.
Today, the talkative Mariayamath is always playing and having fun, says Maimoona. However, the teenager’s doctors have said that her heart is weak and that she cannot become a mother.
Although worried for her children and their futures, Maimoona is determined to not sink into despair. She learned to use a grass cutter and now works every day on an estate to make a living. When there is no grass to cut, she volunteers to cook food for the workers on the estate.
Maimoona managed to save Rs 90,000 from her income and bought a used Tata Nano car. She can now take her children to the hospital in the car. "I have to live... for my children," Maimoona says as she concludes.