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Care giving and care receiving: Everyday difficulties of living with endemic skeletal fluorosis in Telangana, South India

By Venkatesh Boddu

A vast number of people in the Telangana region suffer from fluorosis and even today, it is prevalent in the region. Excess intake of fluoride results in disability in the form of deformed limbs and stunted physical growth which makes it difficult for them to move or walk. It also affects kidneys, other internal organs and the overall health of the patients.

Fluorosis not only makes an individual suffer from disability but also cripples familial relations and becomes a reason for long-running conflicts within the family because it involves a lot of care giving. However, it must be noted that people with this kind of disability are not only recipients of care but are also active as care-givers to others in the family. My informants reported that they are involved in familial matters and help their family members in the best feasible way.

Most of the fluorosis victims are not in a position to attend to their personal daily activities such as attending the call of nature and washing or cleaning themselves. This makes them dependent on others; but they also participate in social activism and fight for a fluoride free environment. They provide their services to the community by participating in awareness programs. Many of my informants, mostly between 10 and 40 years of age, are severely affected by fluorosis. Not all of them were born with the disease, but they only discovered it as they grew older. Their deformed limbs make it difficult for them to walk and make them wheelchair users. In some cases, since more than one generation suffers in the same family, it becomes difficult for other family members to take care of all of them. My informants hate to depend on others and take help and try to manage by themselves as much as possible. In some families, grandparents pose trouble for the family; they blame daughters-in-law for giving birth to fluoride affected children and fight with them, which influences their willingness to take help or call for help in need and suffer.

Swamy, for instance, feels guilty for making his father suffer by depending on him for his mobility. He says, “I used to hold my pee for hours, because I did not want to bother my father.” In due course of time, he suffered from kidney ailments that resulted in hospitalization. There are many instances when my informants skipped meals thinking “if they don’t eat, they don’t have to defecate.” The main intention of skipping meals and holding pee was to make it less burdensome for their care givers and make them independent as much as possible. Tirupatamma, on the other hand, collected expired medicines from the hospital trash cans and attempted to commit suicide by consuming them. She did not want to depend on others. The family members rushed her to hospital on time and she survived. Such instances help us understand how difficult it is for them to make other family members suffer. In many cases, mothers or female siblings play a key role in taking care of fluorosis-affected patients but it is not the same with everyone. In Swamy’s case, his father is the primary care giver:

I hate this life, for making my father suffer. He carries me like a baby and he even cleans me after I go for ablutions. I am a thirty-three-year-old man now. This situation should not happen to anyone. People are inheriting this disease along with other properties such as land and house. I am fighting for them and the future generation, not for us. I don’t want anyone to be born like me in the future.

He hates his condition for making him dependent on his father and also his helplessness towards the family. But Swamy compares himself with other fluorosis-affected persons in the region and feels proud of his father for keeping him clean and helping him dress in clean clothes every day.

Tirupatamma lost her parents and doesn’t have any siblings. Her step-mother, who is also visually impaired, lives with her. Tirupatamma has to take care of herself and her step mother as she doesn’t have any source of income source except ‘disability pension’. She asks, “How is it possible to meet household expenses with Rs.500 per month as pension? Since she can’t see and I can’t walk, we are in need of an extra hand. But no one helps us, without expectation.” A cousin, on the other hand, is harassing her, wanting to marry her. He is already married and has two children, but by marrying her he wants to take over her house and the two acres of land she owns. People in the village support him as “it brings her under his protection.” But she thinks he will abandon her soon if she submits to him. The cousin then started spreading rumors of Tirupatamma’s sexual relations with people who help her. With this fear of rumors, people stopped coming to her. She never wanted to marry because she believes disabled women are unfit for marriage: “Disabled people suffer after marriage. Husbands are not looking after them; they are torturing their wives for extra dowry. I am disabled. I don’t want to be tortured by my in-laws and husband”.

Rangamma feels guilty for becoming the reason for her two brothers moving away from home. Both of her brothers moved out of the house as their wives wanted to get rid of caregiving duties. Rangamma recalls her younger brother’s wedding and cries, “They kept me away from the wedding and I was left all alone under a tree. My family did not want the guests to see me at the wedding.” Even among the family, only her mother takes care of her. In the absence of her mother, she must suffer in filth all day. Her father acknowledged that he kept her away from the wedding due to her personal hygiene, “she pees and defecates all the time and all over”. He did not want guests to feel uncomfortable during the marriage ceremony because of his daughter’s appearance and the condition of her personal hygiene. Ritual occasions make it very difficult for family members but they feel obliged to undertake such steps to avoid hurtful comments from onlookers. Rangamma feels bad for her mother and wants to free her from this burden if she could do it.

Rajitha’s parents are agricultural labourers and they cannot take leave from work if they have to feed the family. Therefore, her younger sister stopped going to school and became a fulltime care giver. Rajitha blames herself for jeopardizing the future of her sister, who would have been in seventh standard by now, if she had had the opportunity to continue her education. These examples are common and can be found all over the region. None of my informants are happy about becoming a burden on their families and especially troubling their siblings and care givers. They know that they are the reason for the suffering of others and, therefore, they try to minimize their needs or compromise as much as they can. They respect, stay loyal, and give their pension amounts to their care givers.

Living with fluorosis, however, has made them strong. They know what their families are doing for them. They take the responsibility for the family’s suffering. A majority of them are happy for having such great families and caregivers but at the same time they feel guilty for making them suffer and becoming burdens to care givers. Swamy tries his best to help his father and protect his mother and grandmother for the care they provide him. Tirupatamma wishes she could have had an extra hand to take care of herself as well as her stepmother. Rangamma and Rajitha want to free their care givers but feel guilty because they cannot take care of themselves. Not all of them have good experiences with care giving. In a few instances, they received blame and physical abuse from siblings and grandparents for becoming a burden to the family. That frustrated some of my respondents. There was no way of escaping the abuse that they were subjected to from family members. The mental stress on care receivers for becoming dependent and ‘burdens’ on the families requires further research.

Photo: Swamy submitting a representation to the Legislative Assembly Speaker on behalf of the flourosis affected persons

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Venkatesh Boddu
 studied MA (Anthropology) at the University of Hyderabad. He completed M.Phil. and is doing his PhD in Medical Anthropology at the Department of Liberal Arts, Indian Institute of Technology Hyderabad. He has carried out ethnographic fieldwork on understanding local perceptions of disability resulting from endemic skeletal fluorosis for his M.Phil. thesis, which was submitted in 2014.


For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.

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