KASARAGOD: All I have got is myself,’ reads Bindu Rajan’s WhatsApp profile status in Malayalam.
Bindu’s poignant line — left hanging with an ellipsis of three sad face emojis — is true for almost all single parents and caregivers of endosulfan-affected persons with intellectual disabilities.
Caregivers, particularly single parents, say they are on the brink of a breakdown because Kasaragod district does not have institutional centres to take care of persons with intellectual disabilities during working hours.
“I start shivering in fear when it is 3.30 pm,” says Bindu, 40. That’s the time when Mahatma BUDS School for children with intellectual disabilities in Periya closes for the day. By 4 pm, the school bus will drop her son Bithul Raj at Maveli Store, a government-run grocery, at Periyattadukkam near Periya, where Bindu works as a saleswoman. “The next two and half hours are like two-and-a-half years for me,” she says.
Bithul is 17 years old but appears like a 10-year-old with the mental growth of a three-year-old child. He is extremely violent. He verbally abuses customers of Maveli and adjacent shops, pushes down their two-wheelers, and scratches the cars with stones. He will roll on the dirt and puddles near the highway if he is scolded. Even making him cross the road after he is dropped at the bus stop is exhausting, says his mother. His constant drooling is another put-off for the customers.
He cannot be sent home after school at Ravaneshwar because he assaults and bites his elder sister Rajana, a PG student at the Central University of Kerala. “Once he put a hot iron on her hand. Another day, when I got home, he had broken four plastic chairs by thrashing them on the floor and Rajana,” she says. “I think I am going mental,” she says.
But Bindu has no choice but to bring her son to the store. Her husband Rajan, a carpenter, suffered a brain stroke and after being on the bed for three years died in 2018. She needs the job to take care of the family. Maveli Store pays her a daily wage of Rs 575. But in a month she earns only around Rs 8,000 to Rs 10,000 because half of the month she is forced to take leave to care for Bithul.
Every morning, she has to hire an autorickshaw for Rs 160to take him to school. The mother and son board a bus in the evening to return home from the shop. “But his mood swings are too frequent and he refuses to board the bus,” she says. On those days, she shells out another Rs 260 to return home in a rickshaw. Bithul resists going to school but once there, he is calm and participates in school activities. “He must be doing all these for my attention. But I have to work,” she says.
All Bindu wants from the government is an institution that will take care of Bithul when she is at work. “This is the least the government should do. I am not asking for money,” she says. But caregivers of endosulfan-affected persons know they would need more faith than the size of a mustard seed in the government to get such an institution in Kasaragod.
The state government has paid Rs 5 lakh each to 6,714 victims of endosulfan as compensation as directed by the Supreme Court. Only 14 more affected families are to get the compensation and the disbursal is held up because of legal heirship issues. Activists and affected families say the government should also provide daycare centres and assurances that the victims would be adopted after the caregivers are gone.
On May 30, Vimala Kumar, 58, a cook at a government school in Panathady panchayat, allegedly killed her daughter Reshma R, 28, and ended her life. Neighbours and colleagues said Vimala took the extreme step two days before the school reopened because she did not have a place to send her daughter with intellectual disabilities when she went to work.
“There are several single mothers of not just endosulfan victims but of children with special needs who have shared the thoughts of ending their lives with me because they don’t have a support system,” says K K Ashokan, secretary of the Confederation of Endosulfan Victims Rights Collectives (CERV Collectives), which helps survivors in their legal fight against the government.
On Saturday (August 6), 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 healthcare facilities in Kasaragod district. She says she will go on an indefinite hunger strike at the same spot on October 2 if the demands are not met.
The painful drag
When Abdul Rahman, 32, was a little boy, his neighbours in Chengala’s Berka used to remember Abdulla taking his son out in a wheelchair for a haircut or to the mom-and-pop shop to buy him chocolates.
Rahman cannot sit or walk on his own. But today, his father cannot even make him sit on his bed. The 61-one-year-old Abdulla is frail and looks much older. He drags Rahman on the red-oxide floor to move him from one room to another. “It’s exhausting,” he says, wiping the sweat from his forehead.
After his wife died five years ago, Abdulla could not even leave his house. Rahman needs his father around for everything. But the father is not complaining. “I am not worried about him. As long as I am alive, he is fine,” he says.
The family has got the compensation given to endosulfan victims. But they need more than money.
(To be concluded)
System down
The first of a two-part series portrays the lack of rehab and daycare centres and the issues caregivers and single parents of endosulfan victims face in Kasaragod. TNIE visits their homes to understand their daily struggle