Role of Women in Endosulfan Disability Care

By Sujitha

Since my brother is affected by this disability, I write this piece to introduce a special kind of disability and its care process, which can be seen only in one region of Kerala. Kasaragod, the northern most part of Kerala, captured the world’s attention roughly seventeen years ago for its status as an Endosulfan affected area. Endosulfan is the name of a poisonous pesticide that was aerially sprayed in the cashew plantations of Kasaragod in the 1980s to kill what are known as tea mosquitoes. The pesticide polluted the soil, air, and water sources of the region and implanted complete disaster. It was not a sudden disaster like the Bhopal tragedy. It affected generations and generations and even now people in Kasaragod are facing its aftermath.The poison gradually eats away not only the life of human beings but the life of animals and birds, so we can call this process as a ‘slow violence’, a term used by Rob Nixon in his book, Slow Violence and the Environmentalism of the Poor.

After the 1980s, Kasaragod changed and became the birth place of children with diverse kinds of disabilities. As a result of this poison, many children here have been born with developmental disabilities, skin allergies, neurological problems, cancerous conditions, and mobility disabilities. Each affected individual’s situation is distinct and there is no pattern to the way the disabilities are manifest across the population. So, the depth of care and attention required depends upon the specific type of disability that the child expresses. Some need continuous care while some require care in certain stages of their life. In appearance, some of the affected children may also pass off as ‘normal’. But most of them have visible physical disabilities along with impaired mental abilities.

Agitations of Endosulfan affected people and their caregivers for justice are a daily sight in front of the collectorate gate in Kasaragod. As they belong to rural or underdeveloped areas, most of those who are affected and their care-givers do not get much attention from society in general. Their class, caste, gender, lack of education, and economic background act as obstacles in their receiving any kind of recognition.

The presence of Endosulfan residues has been detected mainly in seven panchayats in Kasaragod. These panchayats are Enmakaje, Karadukka, Muliyar, Puloor, Periya, Ajanur, Kallar, Panathady, Kayyur, and Cheemeni. My family belongs to the Muliyar Panchayat. As I already mentioned, my youngest brother, Sujith, has been living for twenty years with disability caused by the poisonous rain in Muliyar Panchayat.

My brother is both physically and intellectually affected and he suffers from neurological problems, epilepsy, and mobility disabilities. Compared to most of the others who are affected, he is ‘normal’ in appearance. Physically, he shows proper growth except for the appearance of his legs. His legs are very thin and this prevents him from walking. But he behaves like a small child and lives in his own world. He finds a lot of happiness when he plays with my sister’s three-year-old daughter. When we observe their play, we wonder if both of them are in fact of the same age. We can see the innocence of a child in his face. As his disability is permanent, he needs full time care and the constant assistance of my family. He cannot eat food independently or conduct other activities of daily life without support; he needs my mother’s complete support in personal care. In my mother’s absence, it is either mine or my sister’s or grandma’s duty to take care of him. As his daily caregivers, four of us understand his needs fully, even when he fails to express them effectively. A person outside our family would not be willing to take on his caregiving because he expresses dissatisfaction at their presence. My mother refuses to send him to school or other care centers for disabled children. She is always anxious about a ‘stranger’ taking care of her child. If she goes outside without him, I can see the anxiety and tension in her face.

In conventional cases of motherhood/parenthood, when the mother/father gives care to the child, he/she expects that it will be given back to them at a later stage by the previous receivers of their care. Parents care for their children by expecting that the same will be given back to them in their old age. In the case of children with life-long disability, parents cannot expect anything back from the receivers since they are not able to care for themselves and others. My mother provides selfless and full-time care to my brother without expecting anything from him. In my opinion, caregivers suffer more than those who are disabled. My mother takes the role of a primary caregiver without being able to take a break or wishing for a better future. She has put aside her life to commit to nursing him full-time. My sister and I know that in my mother’s absence it is our responsibility to look after him.

I have never seen my father taking the responsibility of my brother’s care. His only involvement in this matter is as the earner of livelihood. He spends only a little time with my brother and I have observed a kind of lack of emotional relationship between them. According to him, to take up my brother’s daily care, take him to the hospital, and accompany him to the all meetings, medical camps, agitation movements and strikes related to Endosulfan are a mother’s responsibilities. Many times, I have accompanied my mother for my brother’s hospital consultations and medical camps. One of the things that I have noticed in these places is that like us there are many mothers and sisters who accompany their child/brother/sister without a man’s help. The responsibility of care is entirely put on in a woman’s head only because she is a ‘woman’. Ruling elites in the gendered world consider ‘care’ as a tool for oppressing women by assigning the complete responsibility of care on them. A woman is compelled not only to take the care of her disabled child, but she is also supposed to take the care of the entire family.

Apart from the domestic care, professional fields of care also play a crucial role in the care of people affected by Endosulfan. Professional care is totally different from domestic care; both approach care at two distinct levels. Professional caregivers such as doctors, nursing staff, care assistants, special teachers, and social workers are paid caregivers whereas family members are unpaid caregivers and give care in terms of emotional commitment as well. In the Endosulfan case, the state has arranged for professional caregivers to take care of victims by providing a salary. They are appointed to take care but in most cases their care is restricted to giving advice to the parents about how to take care of their children. Most of the time, care becomes a business or a source of profits. Even though the state provides care facilities, how many affected people and their care givers receive its benefits is a question that remains to be answered.

There are many affected people living in Kasaragod, who do not belong to the state’s Endosulfan list and who do not receive any kind of aid. The state has arranged for free hospital facilities in prescribed hospitals such as the Government General Hospital Kasaragod, Kanhangad and Pariyaram Medical College in Kannur district. Most of the victims including my brother fail to utilize these hospital facilities properly because of the travelling that is involved in accessing those facilities and due to the lack of appropriate professional caregivers or companions who could facilitate their travel needs. In my brother’s case, our doctor advised to consult him in Pariyaram Medical College twice in a year. My mother refused to take him twice because it is not possible for her to take him alone to the doctors, medical labs, and toilet. The nursing staff has been ordered to meet the needs of disabled children and their caregivers. In most cases, instead of assisting the caregivers, they only offer advice. Aiming at Endosulfan disabled people’s care, the previous government had passed funds for a medical college in Periya, near the Central University of Kerala campus.  After the government’s offer, two or three years have passed and till this day, no initiative has been taken by the government to construct the Medical College.

When we analyze the Endosulfan fields of care, whether it is professional or domestic, we notice that the arrangements and infrastructure for care are highly gendered. Most of the caregivers, who work in professional fields of care and in the domestic space, are women. We can see the explicit resurgence of women’s identity as ‘caregiver’ in this context. Most of the professional women caregivers choose care as their area because of the social compulsion and the traditional patriarchal expectation of women to fulfill ‘care- giving roles’. ‘Caring’, in that sense, can be considered as one of those trapped feminine roles. As I already said, my father considers care as my mother’s responsibility but my husband spends more time with my brother and cares for him a lot and tries to make him happy. My husband is not a person who considers care as entirely a ‘woman’s’ responsibility. Both my father and husband represent two different generations’ approaches towards care.

Women caregivers and disabled people need the support and assistance of male members to capture the attention of the mainstream. This would minimize women caregivers’ worries and maximize their independence and choice. In fact, to understand the real values and complexities of Endosulfan survivors and their women caregivers, we should begin a new area in care studies.

Photo: Sujitha’s brother playing with his niece

Bio:

Sujitha belongs to Kasaragod district in Kerala. She has just completed an M. A. in English and Comparative Literature at Central University of Kerala. Her research work, which was titled ‘Gender and Care: A Study on Women Carers of Endosulfan Victims’, considers the relationship between ‘gender’ and ‘care’ in terms of Endosulfan victims’ care process.

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