Sheelavathi has been bedridden for the last 35 years after being exposed to endosulfan. A few drops of the pesticide fell on her from a helicopter that had been spraying the substance on the cashew plantation in Kerala's Enmakaje village in Kasargod district one day in 1981, when she was seven years old and returning from school. When she got home, she fainted – and never got up. “I am here to look after her now,” said Sheelavathi’s mother Devaki.“But what will happen to her after my death?”

Sheelavathi is on a list that the Kerala government panel has drawn up of people affected by endosulfan poisoning in Kasargod district, which lies 600 km north of the state capital of Thiruvananthapuram and shares its borders with Karnataka.

About 5,000 people were poisoned with endosulfan between 1975 and 2000 when the Plantation Corporation of Kerala, a public sector plantation company, sprayed endosulfan aerially on its 12,000-acre cashew estates across 11 panchayats.

Endosulfan is an organochlorine insecticide and a highly potent neurotoxin, known to cause birth defects, delayed sexual maturity and suspected to have links to Alzheimer's disease.

Like Sheelavathi, 12-year-old Nandana in Periya village in Kasargod is also on the list of endosulfan victims. She limps heavily, cries loudly, hits her head hard against the wall and turns violent when she sees something unfamiliar. “She rarely sleeps and I have to be in her side all the time,” said Chandramathi, her mother. “I haven’t slept with peace for many years.”

One of Nandana’s neighbors, six-year-old Mithun, is unable to get up from his mother’s lap or from his bed due to impaired visual-motor coordination, a genetic condition caused by the neurotoxic endosulfan. “Doctors advise physiotherapy, but we cannot afford to do it regularly. I am not sure how long we can pull along,” said Mithun’s mother Sumathi.

The mothers of these debilitated children have been fighting a long and unrewarding battle for aid and compensation.

Mithun in his mothers lap. Photo: TA Ameerudheen

In Kerala, endosulfan residues have spread far and wide via wind and rain and the pesticide left a trail of destruction in the district and neighbouring regions in Karnataka. More than 1,000 people have died and there has been an increase in the number of newborns with genetic disorders, which is why environmental activists call it the biggest-ever pesticide-inflicted tragedy in India.

Persistent agitations, led by Endosulfan Virudha Samyuktha Samara Samithi or the Agitation Committee Against Endosulfan, forced the government to ban the pesticide in 2000. At the time, the district administration had identified 4,182 people directly affected by endosulfan. The number rose to 5,832 later, with the addition of 1,318 victims in 2011 and 337 more in 2013.

Despite an increase in the number of victims, successive governments failed to take concrete steps to address their problems. Official apathy forced them to unite with the formation of the Endosulfan Peeditha Janakeeya Munnani or the People's Movement for Endosulfan Victims, in 2012.The organisation brought together mothers of the endosulfan victims – women who have been spending sleepless days and nights at their homes looking after their differently-abled children.

Photo: TA Ameerudheen

The group of mothers have organised more than a dozen protests so far, urging the government to abide by National Human Rights Commission’s rehabilitation recommendations and setup treatment facilities. They have also demanded the creation of a tribunal and measures to write off their debts.

“Mothers of the endosulfan victims are destined to continue agitations,” said Muneesa, president of the movement. Muneesa who lives close to the cashew plantation was born partially blind. Medical tests have established that her blindness was caused by endosulfan. She experiences pain in her eyes and has had three surgeries on them.

“It is sad that our fights haven’t opened the eyes of the powers that be,” she added.

Assurances, but no action

In 2012, this group of mothers of endosulfan victims made their presence felt with a 128-day strike, which was called off after the government agreed to implement their demands following a discussion with the people’s representatives.

“After getting the assurances, we waited for eight months,” said Ambalathara Kunhikrishnan, the convenor of movement, who has been in the forefront of fight against endosulfan since 1998. “But the government failed to keep its promises. So the women decided to go on agitation on February 18, 2013, which lasted for 36 days. It was called off after receiving another set of assurances from the government.”

In April 2013, the Kerala government constituted a panel, headed by retired Justice Ramachandran Nair, to study the feasibility of setting up a tribunal. The panel recommended against forming a tribunal. “Following that, we were forced to take to the streets demanding the withdrawal of the Justice Ramachandran Nair recommendations,” said Kunhikrishnan.

Even though the women continued their agitations for two whole years, the government failed to put together a rehabilitation package. On January 26, 2014, the women began an indefinite strike in front of the residence of Oommen Chandy, who was then chief minister. It was called off after two days following chief minister’s assurance of aid.

Early this year, the women were again seen on the streets, thanks to government’s inaction. They took their children to Thiruvananthapuramfor a pattini samaram – a hunger strike – from January 26, which continued till February 3.

Victims took centre-stage during the agitation, but it invited brickbats too. “Many alleged that we made our children exhibition pieces,” said Nandana’s mother Chandravathy, who is from Pakkam village, which lies close to cashew fields belonging to the Plantation Corporation of Kerala. “We wish to tell them that we are not ashamed of our children. They are our assets. Successive governments cheated them and they don’t have any other option left but to resort to agitation.”

The shelter

While planning and executing their agitations, the collaboration of mothers has also worked to build a day-care centre for mentally retarded children. “Sneha Veedu looks after children during the day time,” said Muneesa. “Launched in December 8, 2014, it now has 13 children, of which nine kids come regularly”. Sneha Veedu means House of Love.

Saneema is one of the beneficiaries of the centre. “My 12-year-old mentally challenged daughter Sahna cannot do anything on her own,” she said.“Sneha Veedu takes care of her during the day time, and it gives me at least 5 to 6 hours to do household chores.”

Radhamani too send her 32-year-old mentally challenged son Sreekanth to Sneha Veedu. “He cannot comprehend pain. Even if he has a leg pain, he would say he has fever. I could recognise changes in his attitude after he admitting him in Sneha Veedu.”

Sneha Veedu, a daycare centre for people with mental defects thought to be caused by endosulfan poisoning. Photo: TA Ameerudheen.

Muneesa said no mothers in the world would have experienced pain and anxiety like the mothers of endosulfan victims in Kasargod. “All the mothers whom I meet at Sneha Veedu pray that the new government would take adequate measures to settle our issues. We will be happy if the government doesn’t throw us to the agitation path once again.”

With the change of guard in state, the victims now pin their hopes on the Chief Minister Pinarayi Vijayan, who visited the endosulfan victims during his election campaign.

“We request the government to implement NHRC directives and the promises given by the previous government,” said Kunhikrishnan. “Pinarayi Vijayan’s government should rectify irregularities in pension and medicine distribution. It should set up a tribunal, improve medical facilities in Kasargod district, set up rehabilitation village, and neutralise the endosulfan kept in different places.”