1. Snehaveedu

Snehaveedu, which translates to English as Home of Love, is a private day-care home for endosulfan-affected persons with disabilities, located in Ambalathara, Kasargod. It is situated within the Pullur-Periya Panchayat, 1 of the 11 endosulfan-affected Panchayats in Kasargod district, according to the study conducted by KSCSTE.Footnote ⁷ Snehaveedu was founded in 2014 in a rented lodge by three mothers and their disabled children, who were affected by endosulfan, as a space that allows the mothers to ensure their children’s safety while they are away at work. The following is a brief description of the founding history of Snehaveedu, as shared in a conversation with Ms Muneesa Ambalathara, an endosulfan-affected person, social activist, and administrator of the care home in question.

While this is the founding story of Snehaveedu, in its newly launched website, another anecdote is given under the title “Detailed background” which reads as follows: “SNEHAM Foundation, established in 2014 in Kanhangad, Kerala, was born from a mother’s heartbreaking concern about her daughter Sheelavati’s future due to her mental disability. This sparked the creation of Sneha Veedu, a daycare program for children with mental disabilities, which has since transformed the lives of hundreds of children and their families.”Footnote ¹⁰ By this, they might have meant that the SNEHAM society (Society for Nursing Education & Habitation for Mentally Challenged) was founded as an attempt to address Sheelavati’s mother’s concerns and that later extended its support to Snehaveedu. It is also possible that the website, given that its aim is to reach a broader community for fundraising and spreading awareness, purposely used Sheelavati’s mother, Devaki’s experience, a frequently covered familiar figure within the K-E episode, instead of Nina’s mother’s story. Besides, Devaki has been described as “an emblematic figure of all the families and caretakers of endosulfan victims” by print and digital media.Footnote ¹¹ However, it is also suggestive of the multiplicity of narratives and collective experiences that led to the foundation of Snehaveedu rather than thinking of it as an individual’s or a group of individuals’ concern. In other words, the state’s neglect of these concerns and the absence of formal care structures necessitated a community-driven collective action that engendered the emergence of Snehaveedu.

Initially supported by the NGO Thanal Vadakara and SNEHAM society along with concerned individuals and region-based communities, Snehaveedu started operating in a lodge rented from a Gulf-Malayali, with only three members who were affected by endosulfan.Footnote ¹² In 2015, Kunchacko Boban, a prominent actor from the Malayalam film industry, appeared on the teleshow “Ningalkkum Aakaam Kodeeshwaran” (You too can be a Millionaire) hosted by another Malayali actor, Suresh Gopi, and won the prize money of 6 lakhs, which he donated to Snehaveedu.Footnote ¹³ Boban participated in the show as part of the promotion of his film, Valiya Chirakulla Pakshikal, which is based on the K-E episode. Subsequently, the actor-MP Suresh Gopi inaugurated the newly constructed two-storeyed building of Snehaveedu that consists of a main hall, an indoor courtyard, a kitchen, a dining hall, and three therapy rooms in 2017. Individuals, including Dr Biju, the director of the film, Valiya Chirakulla Pakshikal, and Ambikasuthan Mangad, author of the novel Enmakaje, have contributed to Snehaveedu’s construction. There were local forms of support as well, such as sponsoring a Maruti Omni van for transportation and the donation of land for Snehaveedu.Footnote ¹⁴ Although it started functioning as a two-storeyed building in 2017, with donations from various people and organisations, it expanded to two separate buildings: one for therapies and the other for administrative purposes. Snehaveedu provides occupational therapy, physiotherapy, behavioural therapy, and speech therapy along with vocational training, special education, daycare, and palliative care, as of 2025. As Snehaveedu is the product of collective concern and action enabled by the care relations among each other and care towards each other, it is often populated by mothers, their friends, staff, neighbours, visitors from schools and colleges, and other people who “care.” Rather than imagining it as a product, Snehaveedu is a process that evolves through care practices, solidarities, and lived experiences. Furthermore, it was a way of “making things work” collectively, which necessarily reconfigures care equations and imaginations.Footnote ¹⁵

At present, Snehaveedu has two building blocks, and the one that was constructed first functions as the major unit with therapies and classes. It has a spacious hall right after the entrance door. A small library is set up on the left side against the wall with books arranged on shelves. Adjacent to the library, in one of the shelves, there are packets of soap powder that were made by endosulfan-affected persons with disabilities at Snehaveedu as part of their vocational training. On the right side, there are benches, chairs, and desks arranged for children and persons with disabilities to sit and do various activities. The same space would be used for Yoga, cultural activities, and occasional classes. Next to the hall, there is a kitchen and dining hall, which is furnished with benches, chairs, and tables. Mostly, mothers and the staff members, such as ayah, cook, housekeeper, teachers, and therapists, sit on these benches, and they engage in conversations with each other. They also feed children or assist those who are in need. Lunch often emerges as a communal event where everyone at Snehaveedu, including visitors and even those who arrive unexpectedly, will be served lunch in the dining hall.

Right in front of Snehaveedu, there was a newly built sculpture of a mother and a child, which I found during the second time I visited the field. It can be seen from the entrance itself. Following an enquiry, the sculptor was identified as a Fine Arts student from Kanhangad, who is also a community member according to the founder, Ambalathara Kunhikrishnan.Footnote ¹⁶ The sculpture is that of a mother seated with a child on her lap. She extends her arm, pointing into the distance, as if she is showing something to her child. There is a curious look on the child’s face with its arms and legs extended as if they are about to move due to the excitement. The mother is wearing a nightie, and the child seems to be wearing trousers. Built in cement, the sculpture is about 8 feet tall, and it could hint at the story behind Snehaveedu, and also it could further push and reinforce the narrative of the mother–child dyad in the care imaginary that exists in the public consciousness.

2. Care contained

As mentioned earlier in the introduction of the paper, “care contained” examines the idea and evolution of “family” within modern Kerala to find out how it actively shaped the gender-care relations. By “care contained,” the paper conceptualises caregiving by mothers as a culturally and politically regulated practice that is contained within families. In the Indian context, family has been assumed as an integral part in the discussions on disability-care.Footnote ¹⁷ The family is also imagined as the primary site of long-term care and the only viable option for sustained support for disabled family members.Footnote ¹⁸ However, the care that is provided within families is gendered, with women expected to assume the role of a caregiver. Feminist disability scholarship has criticised the naturalisation of caregiving as an inherently feminine instinct and virtue.Footnote ¹⁹ This assumption situated female caregivers, especially mothers, in the unit of the family as the primary caregiver. Within the K-E public discourse, the lived experiences of mothers whose children have been affected by endosulfan were central in the creation or invocation of the narrative of the sacrificial mother. Through both visual and verbal texts in the print media, as well as in the digital media, the mothers’ inability to go to work due to the caregiving duty towards their children was imagined as their sacrifice. Many of the affected people need constant care and assistance within the family, given that the state-sponsored care structures remain critically inadequate and at times absent.Footnote ²⁰ Locating care responsibility primarily within families, especially with the mother as the primary caregiver, is what this paper means by the phrase “care contained.” Besides, the paper further investigates the evolution of the family in modern Kerala as a moral unit to examine how it shapes the gender–care relations and the narrative of “sacrificial mother.” Additionally, it also investigates how disability disrupts these “containments of care” in the particular context.

Gita’s daughter, Nina (names are anonymised) is an endosulfan-affected woman with physical and cognitive disabilities and a member of Snehaveedu. During the interview with Gita, she recounted her experiences of domestic violence and alcohol abuse by her husband, who did not allow her to take their daughter to the hospital for treatment at times.

It seems that Gita’s mobility outside their home was denied due to two reasons: one is that she could not leave her child alone at home with no one there to meet her care needs, while the second reason is that her husband forbade her from going outside often. Although these two reasons might sound like two individual and independent problems that exist on their own, on closer scrutiny, one could understand that these two reasons are connected to larger structures. Gita could not leave for work by leaving her daughter alone at home, mainly because of the absence of any formal care structures or other family members who would take care of Nina. While the state government provides free medicines and free treatment for those who are on the endosulfan-affected persons’ list, it assumes family as a site of governance through which the state outsources its obligation to provide structural and sustainable support. In the mechanisation of families as moral units where “care is contained,” the care work is often depoliticised and invisibilised. Furthermore, the family is described as a moral unit in this paper since the idea and identity of a modern and moral subject in Kerala evolved and validated mainly through the evolution of nuclear families.

In the mid-20th century in Kerala, the joint family system gradually deteriorated due to several factors, including the state’s family planning initiatives and legal interventions that reinscribed property rights within joint families.Footnote ²³ Alongside this, contestations and claims emerged suggesting that children would be raised better within small families, where they would receive exclusive care from their parents. However, this does not imply that a homogeneous family structure or design existed. Before the advent of colonial modernity, Christian missionary intervention, and the proliferation of modern education, the family was not a uniform or universal institution across different caste groups, communities, and religions in Kerala. In upper-caste Hindu communities, the family functioned primarily as a mechanism for maintaining caste purity, achieved through the regulation of women’s sexuality and their confinement within the domestic sphere to ensure controlled reproduction. Within such a familial structure, women were positioned as responsible for caste continuity, tasked with upholding endogamous norms while being relegated to domestic labour and caregiving responsibilities.Footnote ²⁴ On the other hand, as Sanal Mohan discusses, among the “slave castes” and certain religious minorities, the imagination of family differed significantly from that of upper-caste Hindu structures, with gendered boundaries often blurred or configured differently.Footnote ²⁵ He argues that in the case of the slave castes, the family did not exist as a singular, self-contained unit within houses. Instead, landlords held the power to claim any individual, including children, as slaves, thereby disrupting kinship ties and fragmenting the sense of a unit. With the advent of Christian missionaries, they started intervening in the slave-feudal arrangements by converting the oppressed people to Christianity, teaching moral lessons, and training young girls in household management. Along with it, the spread of modern education and the resultant, or otherwise parallel, regional political mobilisations introduced the idea of the modern small family as an institution that challenged the caste system and offered a way to live with dignity and identity.Footnote ²⁶ Gradually, in the 20th century, in Kerala, the idea of family also emerged as a key criterion for becoming a modern subject.Footnote ²⁷

Phrases such as kudumbathil pirannavan and kudumbathil pirannaval implied the transformative, metamorphic experience that the modern family offered. Kudumbathil piranna is a Malayalam phrase translated as “born into a good family,” often used to claim one’s identity, worth, or moral value, implying the significance of having a family. This suggests the idea of a family as a unit refined and defined by moral boundaries, which liberated the modern individual from the social order as well. The imagination of an ideal modern family was capitalised by the state. Through family planning propaganda, the state defined small families as the norm and assigned responsibility to parents.Footnote ²⁸ Devika further discusses how in the projection of modern domesticity, the father was imagined as the householder who protects the family, and the mother as the home manager who nurtures the family.Footnote ²⁹ This was not merely a cultural shift but a political strategy, making it more convenient for the state to intervene and administer these moral units. As mentioned earlier, the modern family promised a transformative experience from the prevalent “regressive” social order to a liberated modern subject. However, the responsibility to make this transformative experience happen became the duty of the female caregivers of each family unit. Although the new Malayali woman was encouraged or even forced to an extent to be employed as a wage earner, without compromising her caregiving responsibilities within families.

Tying it back to the beginning of this section, family was imagined as a unit where care by the female caregivers is contained, without spilling it to the public, since they were expected to switch between a worker and a mother/wife, without compromising these roles. In Gita’s case, her inability to move outside the home was projected as a sacrifice, although it was co-constituted by the inadequate structural support and the norm of the modern family, which reinforces her role as a caregiver within the confines of the home. The figure of a sacrificial mother that is constructed discursively is entailed by the containment of care within families. Additionally, the sacrificial mother is not only culturally constructed, but it is also a political strategy to channelise caregiving through mothers, so that the state can actively withdraw from its responsibilities towards the affected. To further this argument, one needs to deconstruct and contextualise the figure of the sacrificial mother within the Kerala context.

3. Locating the sacrificial mother

The idea of a sacrificial mother in the Kerala context is shaped by a tension between Kerala’s modern ideal of the working woman, who balances professional and domestic responsibilities, and the enduring gendered expectation that a woman’s primary duty is caregiving within her family. Often described as the new woman or upheld as “an already empowered [woman],” she is an integral part of the discourse around the Kerala Model of Development and modernity.Footnote ³⁰ She both embodies and is emblematic of the progress, modernity, and development that Kerala claims through the discourse of the Kerala Model. This new woman emerged as part of the women’s question that erupted into the public domain as a politically charged topic in the late 19th- and early 20th-century Kerala. During this time, Kerala society was undergoing a radical transformation due to a conflation of several movements, including anti-caste and nationalist movements, catalysed by the influence of formal education; local mobilisations within caste groups; and Western ideas such as enlightenment, renaissance, and reformation.

The idea of freedom, which became popular due to the independence movements, also made people rethink the oppressed communities in a caste-organised society. In the attempt to revamp and reform this caste-based social order, a new arrangement was devised: a reconfiguration of social structures based on gender. It does not mean that a gendered division was absent before this reordering. It only means that this divide or rearrangement of society based on gender was validated as just, modern, and “natural,” juxtaposing it with the “unnaturalness” of discrimination and divide based on caste. As mentioned earlier, the idea of freedom, popularised by the independence movements, attracted philosophical pondering and deliberation. For instance, reformers such as Chattambi Swamikal defined the ideal woman’s freedom as a status that she receives when she fulfils all the caregiving responsibilities, which are claimed to be born out of the biological process of reproduction. If she fulfils all these caregiving duties within her family, with the material support from her male counterparts, then she is Sarvaswatantra, which means she is entirely free from everything.Footnote ³¹ This sounds like a reversal of the adage, “freedom comes with responsibilities,” since here it is the fulfilment of caregiving responsibilities within the home that seems to be freeing her. Ironically, her freedom is defined by adhering more to the patriarchal structures, such as the unit of family. Within the framework of modern domesticity, she was also expected to shape her child into a moral, educated, modern subject. For this, her education and even employment were encouraged, apparently for the sake of transforming her child. However, she was expected to fulfil her caregiving responsibilities within her family by balancing her job, education, and social life. Hence, the new Malayali woman is marked by this fine balance. While the fine balance qualifies a family as a moral unit of Kerala modernity, what would happen when this balance gets disturbed and disrupted? Shiny is the mother of Shreya, another endosulfan-affected girl at Snehaveedu. An interview with Shiny reflects what can be interpreted as the consequences of the breach of the balance.

Shiny’s job as a teacher at the Lower Primary level in an English-medium school seems to have jeopardised her balancing between work at school and work at home. Her nuclear family consists of her husband and their daughter. Shiny’s husband is a Pravaasi who works in Dubai, and his transnational mobility, especially to the Gulf countries, makes him the primary breadwinner of the family by default. At the same time, the gendered division of labour becomes more pronounced as a Gulf expatriate’s wife is expected to be more invested in her role as a caregiver within the family, and less involved in assisting with the finances.Footnote ³² Hence, even if the wife is employed, she is expected to fulfil her caregiving duties without fail since “she is not the primary breadwinner when her husband is a Pravaasi.” Although she questions the notion that “a woman goes to work only for money” by asserting her right to social life, she still expressed guilt and regret for “prioritising her job” over caring for her daughter, as if she could not maintain the fine balance. Within the scholarship on new womanness in India, the work–life balance is identified as a crucial criterion or a measuring tool for women’s respectability and morality.Footnote ³³ A right work–life balance seemed to provide a woman respectability within and outside her family.Footnote ³⁴ Along with it, the work–life balance also constitutes an ideal mother, whereas if the weight weighs more towards family, then she becomes a sacrificial mother who sacrifices her career for the sake of her family, and on the other hand, if she compromises her role as a caregiver to improve her career, then she becomes “the bad mother.”Footnote ³⁵ An instance of the use of this good mother construct to valorise the mother of one of the affected persons is when Kunchacko Boban, a prominent Malayali actor, wrote in his Facebook account, “Devaki Amma, you will always be the epitome of motherhood for me” on Devaki’s demise.Footnote ³⁶ Sheelavati and her mother, Devaki, have been emblematic of the K-E episode through the media. Devaki Amma’s care for her daughter has not only been valorised as a maternal sacrifice, but also she has been epitomised as the representative of motherhood, which was enabled by/through her sacrifice. Devaki Amma has been described as a warrior in an article printed in the Malayalam newspaper Mathrubhumi, as she had gone to coolie work once her son passed away and took care of her daughter.Footnote ³⁷ The sacrifice of her social life and how she went to work in the absence of her husband and son are valorised as a sacred and noble act. On the other hand, Shiny thinks that she could not become a good mother since she did not sacrifice her job as a lower primary school teacher. One could thereby interpret that the degree of sacrifice defines a good and a bad mother, and this sacrifice is defined by the ability to balance caregiving responsibilities and work.

In the construction of the new Malayali woman, Kerala renaissance literature has also played a significant role. The early Renaissance and Reformation writers and activists, such as Kumaran Asan, V. T. Bhattathirippadu, and Vakkom Abdul Khader Moulavi, have also encouraged Malayali women to receive formal education and to participate in public life through their writings. V. T Bhattathirippadu’s play Adukkalayil ninnu Arangathekk (From the Kitchen to the Stage) was celebrated as a radical force that shook the foundations of patriarchy and conservatism within the Brahmin community in Kerala. However, in this social drama, which is apparently central to the discourse of Kerala renaissance, reformation, and modernity, female characters seem to maintain the fine balance between “kitchen” and “stage.” Although these reformist writings seem to have advocated for women’s education and employment, she is also expected to take up the responsibility of a family by nurturing it with motherly love and mercy. There is an act of fine balance between work and family, which is expected from this new Malayali woman without either spilling into the other. Often, the image of a sacrificial mother is projected by the media as an undesired breach of this “empowering, emancipating fine balance.” “She” was expected to be educated, employed, and liberated without disturbing the patriarchal structures and institutions such as the family. In the mother–child narrative that is circulated through the public discourse of K-E, the sentimentality is therefore evoked at two levels: one for being a caregiver of a disabled child and sacrificing her life, and the other for not being able to go to the workplace as expected from an empowered Malayali woman.

However, education and fulfilment of maternal caregiving duties alone were not sufficient to make the authentic Malayali woman. The new Malayali woman and mother were constructed discursively, shaped by Hindu, cis hetero, neo-savarna values. Early reformers such as Konniyur Meenakshi Amma encouraged Sudra women to emulate Brahmin women in fulfilling their caregiving duties.Footnote ³⁸ The construct of Malayali women immediately short-circuits to a Hindu, upper caste, heterosexual female, consequently excluding Dalit, Adivasi, and women from religious and sexual minorities from the modern unit of family. Being a mother has been imagined by reformers as an instant token of validation of womanhood. She is expected to perfect her motherhood by nurturing love, compassion, and patience. Such mothers who can raise able children through such “gentle power” are contributing to the nation from within their homes and need not go to the public space for work, opines Thachattu Devaki Amma.Footnote ³⁹ However, there were counterarguments made by early feminists such as Anna Chandi, who claimed that maternal care for the child is not a reason enough to keep women away from work.

In Chandi’s statement that seemingly resists the attempts to define women’s spatial and social boundaries within the domestic sphere, it still emphasises the inevitability of giving maternal care until the child comes of age to be independent or starts to go to school. Hence, the contract or negotiation is that if children are of a certain age, if they go to school, another institution of disciplining and care, mothers can be partly relieved from their child care responsibilities. Once the child starts to go to school or overcome the stage of “total helplessness,” mothers are free to go to work.Footnote ⁴¹

It should be noted that there is an emphasis on raising able-bodied children who will become the moral, modern, model subjects, who will also be independent and self-sufficient after a certain age. Once this stage is achieved, parents are allowed to withdraw from actively providing care in the form of money or daily assistance. Additionally, it also suggests that the sacrifice of one’s job or the act of balancing is expected to be repaid as the child matures and assumes responsibility for caring for the parents. In the case of endosulfan-affected persons with disabilities, they often need constant care throughout their lives, which disrupts and disturbs the well-balanced unit of a heterosexual family. The broken balance, presented as a broken promise of modernity, constitutes a sacrificial mother as a moral subject, if not modern. How does sacrifice define motherhood, and what are the consequences of sanctifying maternal sacrifice? How does the state’s carelessness demand and produce maternal sacrifice? Does the act of sacrifice inherently produce a mother? How central is the theme of sacrifice and its association with motherhood within the Kerala context?

4. From sacrifice to motherhood

The theme of maternal sacrifice can be found in children’s literature and primary-level textbooks. For instance, in the story of King Solomon’s judgment, where two mothers fight over a child, claiming that it is their baby, the king suggests cutting the baby in half so that the two mothers will get half of the baby each. At this point, the biological mother of the baby comes forward and requests that the king not cut the baby, and instead, she allows the other woman to take the baby. This story has often been told as a token of maternal love and sacrifice for the sake of the child. Besides, the story is also appreciative of King Solomon’s wise judgment that decided the biological mother since she gave up the fight for the sake of her baby. However, when read through the lens of maternal sacrifice and care, particularly within the context of the K-E episode, the story foregrounds the regulatory role of patriarchal authority in defining ideal motherhood. The king not only decides the “real mother” but also sets the moral standards of maternal love. In this framing, the capacity to sacrifice becomes the defining feature of maternal legitimacy. In the interview with Shiny, she also recounted her husband’s reaction to her decision to go to work. The question of who decides to what extent a mother should provide care for their child connects these two narratives: the King Solomon’s Judgement story and the following anecdote from the field.

Shiny is “brought back home” to facilitate care for her daughter. Her husband scolds her for not being a “mother enough” who “cares enough” for their daughter while he is also away from home. However, his work in Dubai is justified due to the gendered expectations that are supposed to form a family as a moral unit. Sacrificing can be identified as one of the major criteria for becoming a good mother. The theme of sacrifice can be traced back to literary excerpts that were included in the academic textbooks across Kerala.

Idassery Govindan Nair’s Poothappaattu is a celebrated Malayalam poem, portions of which have been included in the state syllabus Malayalam text books at lower primary, upper primary, and high school levels. At its core is a story of maternal love and sacrifice, and the poem has been celebrated for the same.Footnote ⁴³ The plot follows the life of Nangeli, a mother, and her young son Unni, who live a happy life. As the child grows older and starts schooling, a Pootham (a demi-god who often acts like a poltergeist) sees Unni and becomes fond of him. It is described that the Pootham started to have a maternal feeling towards Unni as she is unmarried and childless. Disguising herself as a beautiful maiden, the Pootham befriends the child and gradually draws him away. The mother, distressed by her son’s absence, sets out in search of him. Upon finally finding them, the mother tries to take her child with her, but the Pootham attempts to lure the mother by offering immense wealth in exchange for the child. Refusing to be swayed by such temptations, the mother instead gouges out her own eyes and offers them to the Pootham, symbolically demonstrating her love. However, Pootham tricks the blind mother by presenting her with a doll resembling Unni, which she conjured through magic. Knowing this through her motherly instinct, the mother starts to curse Pootham for tricking her. Scared of the intensity of the curse from an ideal mother who even gouged her eyes, the Pootham finally returns her child and asks for forgiveness. The poem has been widely interpreted and pedagogically framed as a powerful testament to the idealised figure of the self-sacrificing mother. In textbooks, the comprehension questions often foreground this theme of maternal sacrifice, reinforcing the cultural valorisation and appropriation of maternal love through narratives of suffering and endurance.

Acts of self-sacrifice, such as enduring pain during childbirth without using any medical assistance to relieve pain, are also considered the core of being a mother across cultures. The assumption that mothers who undergo C-sections are imagined as less of a mother or “not a mother enough.”Footnote ⁴⁴ In the “health- section” of Manorama Online, a digital platform of Malayala Manorama, a mother who delivered her baby through C-section recounts her experience as follows: “Some of them scorned me for doing a C-section and some opined that a woman does not become a proper mother without enduring the labour pain. Those words were more painful than the C-section itself.”Footnote ⁴⁵ Hence, suffering and sacrificing one’s comfort for the sake of their children and for themselves to get validated as a mother is apparently central to the very construct of a mother. However, the narrative of sacrifice is not confined to defining who a good and bad mother is, but it also defines the modern, moral subject located within the nation-state.

In the K-E context, the already-existing cultural and social imaginations around a mother figure have been invoked in the form of a sacrificial mother, although it departs from the narrative of a celebrated, voluntarily sacrificing mother. Whether it be the endurance of labour pain or the sacrifice of one’s job at the cost of social life, as Anna Chandi suggests, the promise is that of an able-bodied child who moves from home to other institutions, such as school, college, and workplace. According to Anna Chandi, even if a mother has to sacrifice her job, it is only required till the child comes of age. After that, the child will start attending school, later go to college, and then enter the workplace. However, Chandi’s ableist imagination is structured around a child who seamlessly enters the school after a certain age. This imagination does not account for the experiences of disabled children and their mothers and instead projects a contended motherhood. Often, the maternal care and sacrifice are therefore contained within the domestic or private space as “contentment.” When disability enters this “care contained space of content,” the maternal sacrifice seems to be losing its rhetorical significance since it is assumed that it would not be reciprocated or compensated. Due to material conditions such as frequent travels to hospitals, medical stores, medical camps, and even the anti-endosulfan protests, and owing to the cultural framing of the mother of a disabled child as someone outside the normative family imaginary, disability disrupts the containment of motherhood within the domestic sphere. Before asking the question, “what happens when disability disrupts the normative familial spaces of contained care,” the paper delays and deliberates further on how the absence of formal care structures necessitates these disruptions.

5. The benevolent state

Care is widely believed to be a linear process in which it is given by the carer and received by the cared. As Akemi Nishida argues, it is often thought of as a “linear one-way action, as if care is neatly packageable, givable, and receivable and does not leak out and circulate.”Footnote ⁴⁶ This line of thought tends to dichotomise caregiving and care-receiving as two processes devoid of reciprocity. It further separates the lived experiences of the caregiver from those of the receiver, which leads to mutual debilitation.Footnote ⁴⁷ Additionally, the state capitalises on the assumption that care is a “neatly packageable, givable, receivable product” to designate itself as the benevolent provider that supplies care in the form of pensions, relief packages, and compensation.Footnote ⁴⁸ While not dismissing the significance of state-sponsored monthly pensions and free treatments for the affected people, it is important to examine the conditions in which they are given. From time to time, either the pensions would be delayed, or the free medicines would be stopped altogether, which demands another protest led by the affected community.

After each medical camp sponsored by the state, the list of endosulfan survivors also changes by removing some individuals from the existing list. The media reported a recent decision by the Kerala government to remove 1,031 endosulfan survivors from the existing list, claiming that these individuals were not living in the affected regions when endosulfan was sprayed aerially.Footnote ⁴⁹ The NHM District Manager has been reported to have stated that the people were excluded from the list since they did not meet the temporal association criteria: “the 1,031 people were not included in the list of endosulfan victims as they did not meet the temporal association criteria required. The temporal association was verified by the Integrated Child Development Services supervisors in field verification.”Footnote ⁵⁰ As mentioned earlier, although the state provides pensions and relief packages as a benevolent caregiver, the power to determine those at the receiving end is vested with the state. These schemes are also shaped by the imagination of care as a product to be supplied or as a service to be provided by the benevolent state. Furthermore, imagining care solely in terms of finance concomitantly results in channelling caregiving through families, specifically mothers. The absence of state-sponsored care homes or other formal systems of support discursively constructs “the sacrificial mother” who is left with no other option than to stay home and attend to their disabled children’s care needs.

While paternalism is the practice of protecting or providing for someone by restricting their freedom or autonomy, the existing scholarship describes paternalism as the usurpation of one’s choice, apparently for their own good. Under the guise of charity or benevolence, it controls the populations, determines who receives what, and undermines the rights and justice framework. By not denying the significance of distributing financial assistance, the paper examines the state’s presumptions around care. Although the construction of day care homes was one of the frequently raised demands during the protests by NGOs, including Endosulfan Peeditha Janakeeya Munnani, the selective focus on pension is one of the instances in which the state determines the degree of deservingness.Footnote ⁵¹ The provision of money in the form of relief pensions takes the shape of bureaucratic benevolence. Through this, the state equips itself to be a powerful agent that can cut these allowances at any time. When inquired in the field, the information I obtained was that the Snehasanthwanam Endosulfan Victims’ pension has been stopped as of March 31, 2023.

Snehasanthwanam is the pension provided by the state from 2010 onwards to the endosulfan-affected people who are on the endosulfan victims list. The list is prepared by a state-appointed team of doctors by examining the applicants who attend the medical camps organised by the government. The particular pension scheme has been implemented by Kerala Social Security Mission, which identifies itself as a charitable society under the government of Kerala. On its official website, it announces that this scheme acts as a relief measure for the endosulfan victims in the state. However, the pension is granted to the affected people by categorising them into three units: Category 1, Category 2, and Category 3. While category 1 is constituted by bedridden persons, category 2 includes persons who can do activities with the help of others. The third category was meant for those who do not require assistance. Category 1 receives Rs. 2200 per month, category 2 is given Rs. 1700, and category 3 is provided with Rs. 1200. State-sponsored economic assistance, including pensions, grants, and scholarships, are forms of paternalistic care. However, the major and sometimes the sole focus on financial assistance and the absence of care homes, centres, or institutions in the public sector, places care within the families. Such a framework not only individualises responsibility but also obscures the structural neglect towards disabled individuals by the state.

For instance, in 2022, the deaths of Vimalakumari and her daughter Rashmi, who was an endosulfan-affected person with cognitive disabilities, received media coverage, inviting attention to the absence of any structural support that culminated in the incident.Footnote ⁵² Vimalakumari had been working as a mid-day meal cook at Chamundikkunnu Government School in Kasargod while her daughter Rashmi was staying at a private care home run by Christian missionaries in Kasargod.Footnote ⁵³ During the COVID-19 pandemic, Rashmi returned home when the care home shut down. Even after its reopening, Rashmi remained unwilling to return to the care home, a reluctance that may reflect her complex relationship with the institute. For Vimalakumari, the stress of leaving her twenty-eight-year-old disabled daughter at home while she is away for work compounded, and she opted to kill her daughter and die by suicide as a solution to this predicament.Footnote ⁵⁴ This particular incident underscores the absence of any state-sponsored care structures or mechanisms of support that the mother and daughter could have availed themselves of. Care requirements of the endosulfan-affected communities are diverse and complex, and meeting them solely with financial assistance is to overlook the broader dimensions of care.

The state assumes itself as the benevolent, paternalistic caregiver by providing pensions and economic assistance. However, it also supposes families, mainly mothers, as a “ready-made reserve army” of caregivers.Footnote ⁵⁵ It simultaneously capitalises on the idea of the public–private divide concerning care. With the notion of paid work in the public and unpaid work in the private, the state assumes the provision of paying as its duty by assigning care as the unpaid work that needs to be done by or within a family. Furthermore, families with their ingrained values around gender and care naturalise caregiving as a feminine instinct, generosity, or altruism, which discursively produces the sacrificial mother. However, in the particular context of K-E, does disability disrupt the normative family narratives and resist or reimagine sacrificial motherhood?

6. “More than family”: conclusion

In an interaction with Ms Amina, one of the mothers of endosulfan-affected children at Snehaveedu, when asked if she thinks of the relationships between the mothers at Snehaveedu as family, she answered smiling, “this is more than family to us.”Footnote ⁵⁶ “Kudumbam pole” (“like a family”) is an expression in the Malayalam language that is used in literary and cultural contexts to express the intimacy and warmth of a relationship. Comparing any relationship to family is considered to be a gesture that conveys the strength and intensity of that relationship, positioning family as an ideal measure unit against which all other relations and relationalities are evaluated. In that case, when Amina says her relationship with other mothers at Snehaveedu is more than family, what could the “more” mean? What are all the spatial, cultural, social, and political significations that the “more” could invoke? The expression, “more than family,” does not simply signify a space that is distinct from family, but it also disrupts the imagination of family as the ideal unit of a relationship.

As mentioned earlier in this paper, family was discursively constructed as a moral unit in Kerala, where kinships and relationships are organised through gendered hierarchies. Additionally, families are governed by cis-heterosexual norms that regulate affective dynamics as well. Hence, the usage “more than family” is indicative of an affective space that is both beyond and different from the concept of family. Friedner discusses how deaf women participants at Delhi Foundation of Deaf Women (DFDW) reflected on their relationship among themselves when they were asked if it was like a family. They outrightly denied this comparison between family and deaf women’s sociality at DFDW. For them, family was formed through blood relations, obligations, and responsibilities, whereas at DFDW, they could meet more people “like them,” and communication is easier.Footnote ⁵⁷ One participant finds the sociality of deaf women similar to her family, because she sometimes feels a sense of obligation towards younger women at DFDW, arising from her role as an experienced member of the organisation. Friedner focuses on the complicated nature of this distinction and the denial of comparison between the two, as they were not trying to value deaf sociality over kinship or vice versa.

Similarly, Amina’s use of the phrase, “more than a family,” marks the distinction, although it clearly values the mothers’ collective and bonding over the unit of a family. Despite the phrase sounding like it is an extension of a family, it carries within it the possibilities of relationalities and socialities different from a family. It also hints at the non-accommodativeness of disability-care within the prevalent familial structures, and that care overflows these confines or containments, creating newer spaces outside them. Snehaveedu also acts as a space where the unemployed mothers who have been framed as “sacrificial mothers who sacrifice their job and social life” can come and spend time with other female caregivers. The significance of these more than family spaces is revealed through a mother participant’s account of the death of her disabled son, who used to be a member of Snehaveedu, an event that foreclosed her access to Snehaveedu as well. Although she could still visit the care home, her spending time there is no longer approved or validated by her conjugal family. Disability-care, in this way, creates socialities and solidarities that enable the care participants to negotiate and navigate through unaccommodating and unjust structures by disrupting the ableist and patriarchal norms of belongingness. However, it is also important to acknowledge the complexity involved in interpreting the “more than family” usage, since the valuing of these maternal bonds in the particular context could be contingent or shaped by the absence of other mechanisms of support. Although these bonds, ties, and collectives are formed by the unaccommodating structures of the family, they should not be understood solely as a way of compensating for inadequacies within the biological family or even to replace it. While care collectives outside familial and formal structures are organised primarily out of necessity, “to make things work,” they are also political mobilisations against the state.Footnote ⁵⁸ Even if the intentions behind the informal care networks seem to be driven by necessity, these care relations can be thought of as “accidental activisms,” potentially reconfiguring and reimagining kinships.Footnote ⁵⁹ In the expression, “more than family,” the more could signal the possibility of spaces that extend beyond and are distinct from the family.

Addlakha argues that “increasing feminisation of the care process” can be oppressive to women; however, it also offers women “greater freedom to organise the care process in the absence of significant male figures.”Footnote ⁶⁰ In the context of disability and long-term caregiving, these mothers build “alternative kinships” or relationships distinct from kinships that emerge out of necessity but evolve into enduring emotional and social bonds, which deconstruct the narrative of a sacrificial mother.Footnote ⁶¹ Disability, thereby, becomes a “generative force” that disrupts and dismantles debilitating structures.Footnote ⁶²