I met Saba Parvin at the OPD of the Calcutta Pavlov Hospital, the largest government hospital for mental health treatment in and around Kolkata.Footnote 1 Saba was there with her mother, who had been receiving treatment since Saba was four. I was resting on one of the OPD benches after a busy morning, conducting surveys of OPD patients for an NGO where I was interning. We were sitting next to each other and ended up having a conversation.
Saba’s father had migrated to Kolkata from their village in Bihar and taken up work as a taxi driver; she and her siblings were born in Kolkata and had always lived there. As we spoke, she insisted on buying me tea. I asked if I could meet her again to interview her, and she invited me to her home. I met her a few days later, on a sunny winter afternoon in her small rented room in Park Circus. Saba was 32 when we met. She made a living selling little packs of everyday items like shampoo sachets, rubber bands, and toffees from her room, but this was barely enough to make ends meet. She was her mother’s primary caregiver and also the sole earner. She told me that her five older siblings were married and busy with their families.
She, too, was married, but her husband and his family had turned her away because she could not get pregnant. She had been troubled by chronic reproductive illness since adolescence. She told me it might be because she had contracted polio as a child, which had also left her with a limp in one leg. Saba’s mother was in the room while we were speaking. She seemed to be in her own world, quietly sitting on the bed or pottering about, not seeming to pay attention to us.
There were moments during the conversation when Saba’s distress was palpable. She told me, “Kahin aur janam hota toh accha se parwarish hota, accha se padhai likhai, har chiz hota … zindagi bhar bandish mein hai” (If I were born in some other family, I would have been looked after well, I would have studied well … I have been trapped all my life). “Na humko maa se pyaar, na apne jism se kuch mila” she added (I did not receive any love from my mother nor anything from my body). In those moments, however, her mother would come sit next to her, gently place her hand on her, and try to soothe her.
During the interview, Saba also told me that she regretted not having been able to finish school. She said this made it hard for her to get a job now. The only employment easily accessible to her was working as a domestic worker, but she could not take up work that required her to be away from home and leave her mother unsupervised for long. Saba said:
I was in school till 95. I studied till 5th standard. After that I was not able to study. Also, my mother was not well so if she had been well, she would have looked after all this. She would have told us to go to school or gotten us admitted. Fathers don’t care about these things so much. Nowadays, fathers also look into these things. But in our times, fathers did not pay attention to things like these. It did not matter if girls studied or not; they would get married and go away. Nowadays, boys and girls are the same. But earlier, they used to educate the boys and not the girls. So, my father never paid too much attention to these things. He used to go to work. And when he came back from work, he would eat and sleep. He never got me admitted to any school. My mother also did not. My elder sister got me admitted.
While Saba’s entry into school was delayed because of her gender, social class, and her mother’s illness, it was her own illness and chronic pain that made it difficult for her to be in school and caused her untimely exit from schooling. She said:
When I was 12 and I was about to become an adolescent; I suddenly felt pain in my abdomen. First, I thought it was because of gas. My older sisters were married by then. If my mother was well, she would have understood my pain. Only a woman can understand another woman’s pain. My father won’t understand that right? After the operation my MC (menstruation) started and everything was normal for one year, and then again, the pain started. It used to hurt so much that I could not even eat. It used to pain day and night…. If my mother was well, things could have been better. Because of this, I could not continue with my studies. Whenever I used to go to school or sit to study, it used to begin to hurt and I used to get frustrated. I used to go to school, but I could not study so I used to take leave and come back. And it used to hurt so bad that even the teachers in my school would be fed up. It used to hurt but I used to hide it. How could I have told anybody? If it was something else, I could have told them, but this was an issue with my MC. I could not talk about it openly with anyone.
Despite Saba’s late entry and early exit from school, her years in school are both a testament to the presence of children with disabilities (disabled children or children with disabled family members) in schools and the ways in which schools alienate and exclude such children.While it was Saba’s bodily excess and disability that ultimately pushed her out of school, it was also her mother’s disability that made her more vulnerable and aggravated her exclusion. Yet within policy and research in the Indian context, it is disabled children and the parents of disabled children who have found voice and visibility, while disabled parents and their children have remained a far more invisible category.
Nidhi Singal notes that since the 2000s, there has been an increased visibility of children with disabilities within the international educational discourse, fuelled by growing international attention to education in general and increased concern for disability rights. This is reflected nationally, too. The Right to Education Act, passed in 2009, provided a legal guarantee for the education of all children, including children with disabilities who were recognised as a disadvantaged group. Singal notes that while enrolments have improved, concerns over the poor quality of educational infrastructure, low investments, dearth of resources, and a lack of research on education and disability plague disabled children’s access to schooling.Footnote 2 Recent scholarship has discussed the neoliberal ableist logics of the educational context in India. The National Education Policy has been critiqued for increased privatisation and its emphasis on enrolments and assessments instead of the quality of education.Footnote 3 Inclusive schooling, too, is embedded in larger ableist structures and continues to discipline non-normate bodyminds. It is often experienced as negligent of the needs of disabled children and their social contexts.Footnote 4
Disabled children’s marginalisation in education occurs within a larger context of the discursive production of them as vulnerable, burdensome recipients of care, alongside the reponsibilisation of care within families and the invisibilisation of state neglect that further aggravates care needs.Footnote 5 In global south contexts, where disability is experienced by the family or community as a unit and not only by the disabled individual, questions of schooling and disability cannot be narrowly focused on disabled children alone and should take into account the familial unit.Footnote 6
1. Situating Saba
Saba was one of the people I spoke to for a larger project on adult children of mothers with psychosocial disabilities aimed at making visible their childhood experiences. This article centres the voices of children like Saba to visibilise their schooling experiences and ask what can be made visible or troubled about schooling through the centring of childhoods marked by maternal disability?
The article is based on fieldwork carried out in Kolkata in 2019. Purposive sampling was used to select the participants, who were identified through personal networks and with the help of Paripurnata, a Kolkata-based NGO working with people with psychosocial disabilities. Unstructured and semi-structured in-depth interviews were conducted with the adult children of mothers with psychosocial disabilities. The interviews were conducted in Bangla and Hindi and were translated by me into English. While all the participants had mothers who were undergoing medical treatment for mental illness when they were children, and this was the inclusion criterion for their selection, the nature or type of mental illness was not the focus during the interviews. Rather, participants were encouraged to share their relational and affective everyday lived experiences of childhood.
At the time of the fieldwork, all participants were adults and were looking back and narrating their childhood experiences. Saba, quoted above, belongs to a Bihari Muslim family. The other participants quoted in the article, Rakhi, Dhiren, Abhishekh, and Girish, belong to Bengali Hindu families. Their familial and socio-economic backgrounds are discussed in more detail later in the article, alongside discussions of their schooling experiences at the intersection of multiple social identities.
What emerged during the interviews were narratives about family, disability, and schooling. I read these narratives as experiences of care and uncare both within and outside the family. It was through these experiences of care and lack of it that participants made sense of and narrated to me their experiences of and with disability. Their everyday experiences of schooling were intricately entangled with the organisation of care within the family and shaped by larger sociopolitical contexts. Their experiences of school enrolment, attendance, performance, belongingness, and overall, how education was made accessible or inaccessible were mediated through care relations. This article draws attention to the marginalisation of children with disabled family members, specifically disabled mothers, within education to ask how these experiences can disrupt normative assumptions of schooling and in what ways access to education is entangled with care, interdependence, and relationality. The following three sections are a brief overview of scholarship from childhood studies, feminist ethics of care and disability studies which provides the theoretical background for this article.
2. Precarity in neoliberal education
This article draws on scholarship from childhood studies, especially the works of Sarada Balagopalan. Balagopalan critiques postcolonial India’s faith in schooling as an ideal antidote to complex inequalities and a driver of modernisation and economic development while simultaneously invisibilising and naturalising children’s paid and unpaid labour.Footnote 7 She draws attention to the constant states of crisis, precarity, and uncertainty in the lives of marginalised children produced by neoliberal capitalism, which makes children’s labour essential for their family’s survival.Footnote 8 Accelerating privatisation and marketisation of schooling, futher, intensifies precarity. Despite its commitment to education for all, the state’s involvement remains limited to a preoccupation with enrolment numbers and making parents responsible for children’s attendance and performance in school.Footnote 9
Balagopalan argues that by thus responsibilising parents for their children’s educational participation and outcomes, the state depoliticises the decisions families make around children’s care work and labour, rendering invisible the sociopolitical conditions within which such decisions become non-negotiable.Footnote 10 While legal guarantees and progressive legislation in education have made way for the entry of subaltern students into the schooling system, they continue to experience the school space as a site of exclusion. Thereby making the inclusion/exclusion binarie redundant. In a deeply stratified postcolonial society like India, schools are the spaces sought out by marginalised communities as a means of escaping their lived structural inequalities. However, “school spaces as produced through the accretion of casteist, ableist, hetronomative, anti-Adivasi, anti-Muslim and sedantary imaginaries” often end up producing and reproducing the same inequalities and hierarchies.Footnote 11
3. Conceptualising and contextualising care
“Care is a species activity that includes everything that we do to maintain, continue, and repair our world so that we can live in it as well as possible.”Footnote 12 Care is the central human activity through which all life is sustained, and yet its position in political discourse has historically been marginal. By turning a critical lens on caregiving and care-receiving as essential human activities embedded in social, political, and historical processes, feminist and disability studies scholarship has been instrumental in recognising the importance of care in all human life and the mutuality and relationality embedded in caring relationships.
The article draws on Joan Tronto’s theorisation of care as a political concept central to democratic values. She contends that the privatisation of care work under capitalism and patriarchy has made it invisible, undervalued, and unevenly distributed work performed by women, especially women of colour. Therefore, a caring democracy is one where care is centered through its recognition as essential social and political work and caring responsibilities are shared more equitably.Footnote 13
The article also draws on Akemi Nishida’s conceptualisation and relational analysis of care as circulating among people and being shaped by the social, cultural, economic, and historical contexts. In her book Just Care: Messy Entanglements of Disability, Dependency, and Desire, Nishida examines the interdependencies and messy dependencies that care entails and argues that the lives and justice issues of those positioned as care workers and care recipients should be understood together, since lives held together through care relationships are coexperienced while coconducting everyday intimate care activities. She specifically highlights the commodification of both the care needs of disabled people and the caring capacities of care workers through capitalist and patriarchal structures.Footnote 14
While the above-mentioned conceptualisation of care has universal resonance, Parvathi Raghuram reminds us that everyday care practices are embedded in cultural and spatial specificities. The question of who provides care, who is seen as deserving of care, and how care is organised, differs over time and geographic locations. For countries in the Global South, such as India, pursuing economic development has come at the cost of the provision of social care, so that care has largely remained limited to the familial ambit.Footnote 15 Care institutionalised within families is the highly gendered, individualised, invisibilised, and naturalised labour performed by women, especially mothers.
The article’s focus on disability and mothering more so than parenting is intentional, since the feminisation and responsibilisation of care within families means that adult women, including disabled women, specifically mothers, perform a disproportionate amount of care work for their families.Footnote 16 Gendered norms and reproductive control of women also make it more likely for disabled mothers to be single parents, parenting in poverty, and increasing vulnerability to marginalisation.Footnote 17 Further, invisible disabilities such as psychosocial disabilities are less researched in India and hence often invisibilised. However, this offers a valuable opportunity to expand discussions about access, moving beyond a narrow focus on physical infrastructure by critically examining the ideological assumptions that produce and reproduce difference as deficit.
4. Accessing care
Disability experiences are shaped within specific socio-cultural contexts. In India, the familial context is especially central to how disability is understood, managed, and lived with on an everyday basis.Footnote 18 Care and family in relation to disability were formally enshrined in law with the passage of the Persons with Disabilities Act (2016) and the Mental Health Care Act (2017), both of which recognised disabled mothers and their children and made special provisions for their support. However, they remain largely unimplemented. In the countries of the Global North, where social welfare is available in the form of state-sponsored care assistance to disabled mothers, such care assitance has been critiqued for being individualistic, leading to the fragmentation of services and over-servicing or surveillance of disabled mothers by their paid care workers.Footnote 19 Rukmini Sen makes a similar observation about the Rights of Persons with Disabilities Act 2016. She argues that the rights-based approach of the law is a western way of looking at the rights of individuals and pays inadequate attention to relationality and interdependence.Footnote 20
Access is contingent on care. The question of access cannot be reduced to a question of accommodations and logistics. It is a question of creating a world that cultivates a meaningful sense of belonging for all those who occupy it.Footnote 21 Belongingness emerges from bodies being desired by spaces, not from bodies being made to fit into spaces.Mia Mingus writes, “access is not simply a question of including individual bodies in public spaces, rather access is a tool for challenging ableism and transforming the norms and values that make the world inaccessible.” For Mingus, interdependency and human connection are at the centre of her theorisation of access. She conceptualises access intimacy as “interdependence in action.”Footnote 22 She further writes:Cultivating access intimacy is a way to directly challenge ableism and the relentless isolation that disabled people endure, especially disabled folks who are part of other oppressed communities. Access intimacy at once recognizes and understands the relational and human quality of access, while simultaneously deepening the relationships involved. It moves the work of access out of the realm of only logistics and into the realm of relationships and understanding disabled people as humans, not burdens.Footnote 23 Since access is enabled by relations of care, there can be no disability justice without care justice and a recognition that all lives are relational, affective, and interdependent.Footnote 24 Annamama and Handy argue that disability justice needs to move beyond representation because visibility does not necessarily ascertain justice. It requires the centring of those lives which are the farthest from the norm and therefore the most marginalised, and this necessarily entails questioning and disrupting existing norms.Footnote 25
In the absence of a formal care policy in India, where the ability to purchase care within a neoliberal health care assemblage is limited to a few. Where care is then primarily organised within families and shaped by cis-heteropatriarchy. Where existing socio-economic structures produce marginal children’s waged and unwaged work, including care work, as essential to their survival. The conceptualisation of access requires an understanding of the interdependent nature of lives and how marginalities are shaped by both disability and proximity to disability. Placing families with disabilities at the centre of analysis as opposed to children with disabilities, this article asks in what ways access to education is entangled with care, interdependence, and relationality.
Such a relational analysis is to neither valourise nor sentimentalise care work or the extended kinship networks as support systems, nor to deny families as sites of oppression, neglect, and uncare (especially since these interviews suggest that experiences of violence, neglect, and lack of care within families themselves culminate in experiences of distress and disability), but to acknowledge the complexities of interdependency and messy dependencies that disabled life worlds entail. I will use the terms care partners, care providers, and care receivers throughout this article. My usage of these terms comes from the understanding that these categories are neither fixed nor mutually exclusive.
Drawing on the above scholarship, I turn to the narratives of children with disabled mothers to visibilise their marginality within schooling, which has not been adequately paid attention to, and to attend to the normative assumption inherent in modern schooling that becomes apparent when marginalised and invisibilised childhoods are paid attention to. The ensuing analysis of the narratives of the adult children of mothers with psychosocial disabilities and their experiences of schooling attends to the exclusions and inclusions from education that occur at the intersections of disability and other social identities. While these experiences of schooling are specifically marked by disability or proximity to disability, they occur at an intersection of multiple social identities and are also in many ways similar to the experiences of other categories of subaltern students, such as first-generation learners, migrant children, girls from non-dominant communities, and so on. Children like Saba, who simultaneously occupy all of these categories, become the bodies too “unruly” to be disciplined and schooled and ultimately pushed out of the schooling system.
5. Pain and trauma in school
There was no place for Saba’s embodied experience of pain and the complex realities of a home with multiple chronic illnesses within the schooling space. It caused her teachers to be “fed up” and Saba was pushed out of school. Today, Saba lives with the everyday material (not being easily employable) and affective (regret and resentment towards her mother) consequences of not completing school. While Saba was acutely aware of her family’s poverty and its impact on her “padhai likhai” (education), it is also her mother’s illness that she held responsible for her incomplete schooling. It is her mother, she believes, who should have been taking care of her. Her mother’s absence from active participation in daily caregiving at home, especially in the management of a stigmatised reproductive illness, ultimately made it impossible for Saba to continue at school.
Another participant, Dhiren who grew up with parents who were both diagnosed with mental illness during his early teenage years, described how a stressful home environment made it difficult for him to study. At his home, it was his mother, a school teacher who looked after him and his father. Dhiren mentioned that his mother used to hear voices that made her suspicious so she would curse loudly or fight with the neighbours which he found distressing. He told me:
I had a lot of trouble in terms of mental stability or peace or concentration. I did not have mental peace or I felt that something was missing. So, I tried to overcome the emptiness by engaging elsewhere, in a different space. So, my studies were hampered because I used to spend so much time outside home. I used to come home late. I could not concentrate. So, my studies were hampered.
These experiences of childhood and schooling point to the school system’s production of mental distress, trauma, and bodily pain as disruptive excesses.Footnote 26 Educational spaces require students to be present, attentive, and embody fixed, stable, and controlled affect. Academia is always imagined as oppositional to excessive emotionality. Emotions, pain, and trauma are seen as anti-intellectual, threatening, and disruptive to the learning process and to belonging outside of the classroom.Footnote 27 Further, this points to the exclusion of diverse lived experiences as valid epistemic positions with generative possibilities.
The privileging of abstract forms of knowledge over knowledge acquired through everyday lived experiences and children’s immediate culture produces some children as less educable, especially when their school and out-of-school environments do not align.Footnote 28 School cannot become inclusive unless school curriculum and textbooks reflect children’s diverse cultural locations.Footnote 29 Saba and Dhiren’s experiences compel us to think about questions of accommodating experiences of bodily and emotional pain within schools. How can schools be safe spaces and inclusive for students whose access needs are not always visibly apparent, intelligible, can be verbally articulated, or can be articulated in the language of accommodations? Meaningful access to education would require an acknowledgment of and pedagogical engagement with the lived realities of students’ personal/cultural trauma, and the ways in which these experiences of pain, suffering, and distress are entangled with and produced by schooling experiences.
6. Living in care time
Dhiren spoke of being unable to study or devote time to his studies because he was constantly trying to escape the troubles at home by spending time outside of home. Here, the spatial–temporal reality of a troubled childhood comes into conflict with the ableist spatial–temporal requirements of schooling. The organisation of care within families, especially where the primary caregiver, that is, the mother, is disabled, troubles the understanding of the spatial–temporal realities of childhood in other ways too. Disability studies and childhood studies scholarship have highlighted the construction of time as a neoliberal, racist, and ableist concept that produces non-normed bodies as the other.Footnote 30 The following section attends to the ways in which lives shaped by disability and proximity to disability defy the assumptions of normative space, and how this complicates schooling.
Here, I draw on Sarah E Stevens’s concept of care time, which she developed by building on crip time. Crip time, or Mad Time, as developed within disability/Mad studies scholarship is a recognition of the myriad ways in which disability and illness experiences transform the embodied experience of time and space by fracturing linear, progressive time with its normative life stages.Footnote 31 This being in and doing time differently challenges normative temporalities. Stevens uses this concept to further conceptualise care time. She defines care time as “a liminal place that shifts location between crip time and abled time in a complex, unpredictable dance.”Footnote 32 Stevens conceptualises care time as belonging in crip time yet being aware of one’s “abled otherness.” Care time is experiencing abled time while simultaneously experiencing the unpredictability, precarity, and fatigue of crip time. To live in care time is to live the instabilities and unpredictability of space and time.
In moments of heightened care needs, those bound to each other through everyday relationships of care, whether as care partners or care dependents, find themselves extracted from their stable, linear, and familiar space–time. For children of mothers with psychosocial disabilities who might be dependent on their mothers for meeting their everyday care needs or/and act as care partners to their mothers or care surrogates at times of maternal ill health, living in care time means that they are unable to fit the rigid spatial–temporal logics of schooling. For Abhishekh, it meant that he had to absent himself from school to do household chores. His mother had fallen ill after the passing of his paternal grandmother. During the interview, he told me that his mother was blamed for his grandmother’s death, and he believed that his mother’s mental troubles began because his father did not look after her. He said:
My father and his sisters sent my mother to her father’s house. She would be brought back when she got better. They did not want to keep her at home, especially because my grandmother was no more.At that time, I used to cook for us and wash clothes. I could hardly go to school …I used to go to school, but my attendance was low. Because if I went to school, who would cook at home?
Similarly, for Girish, it meant that he could not go to school for months because he was displaced from home. Girish’s father had wanted a divorce when he found out soon after marriage that his wife had a diagnosed mental illness. However, he unwillingly continued with the marriage because Girish’s grandfather forbade him from getting a divorce and became, as described by Girish, an absentee husband and father. He narrated: “So, my father used to go and keep her (mother) at her parents’ house. After two or three months, she would get better. So, when this used to happen, I would not be able to go to school or study. I used to accompany her. Who would keep me here?”
For other children, familial disability could mean that they are unable to attend school because they are taking care of sick family members. In Renu Addlakha’s article on disability and kinship in India, a participant explains that when she is sick, she prefers being admitted to the hospital rather than being looked after by family members so she can avoid domestic conflict. She says:
Our Bhabhi (sister-in-law) always fights about me. When I was in Orissa, I lived in the servants’ quarters. She told my brother, “I won’t keep this madwoman in my house!” I cooked my own food on the stove. In Pratibha’s (sister) house, they also fight when I go. At least there is no such problem when I am here in the ward (hospital ward). Then, Gita (daughter) only has to miss school to be with me.Footnote 33
Disabled mothers often seek support from their children and rely on them for meeting their care needs since seeking support from other adults might be perceived as a sign of unfitness and incapacity.Footnote 34 Indeed, disabled women perform household care responsibilities even when they might be perceived as unfit for mothering. It is only in moments when she is unable to perform the reproductive labour that is expected of her and essential to the everyday survival of her family that her care needs are recognised. The woman then becomes the recipient of care, often to be performed by her children or natal family.Footnote 35 Consequently, it is the mother’s heightened care needs that then rupture her children’s normate space–time.
Children under her care also then become the responsibility of her natal family, such as in the case of Girish, or they stay back to take over the care work in her marital home during her absence, such as in the case of Abhishekh. These movements of bodies, either together or away from each other, within contexts of shared vulnerability and care relationalities both shape and are shaped by schooled subjectivities. Classroom learning, organised around rigid and restricted timeframes, where regular attendance, punctuality, attentiveness, and the ability to learn quickly are valued as signs of motivated learning, produce and aggravate disability by disadvantaging disabled children and children with disabled family members.Footnote 36 While in these narratives, the children are unable to go to school because they are moving around with their mothers, either to hospitals or their natal homes, or staying back to take on their mother’s care-taking roles; for children from poor marginalised communities, parental disability and illness might require them to take up wage labour to supplement the loss of income.Footnote 37
Moreover, school-going children from marginalised communities, irrespective of disability, engage in waged or non-waged work or seasonally migrate with their families in search of work. As opposed to children who might not be constrained by similar care needs and responsibilities, the space–time occupied by many categories of marginalised children is unstable and unpredictable. They, therefore, do not fit the rigid “spatial temporal order” of modern schooling, which, as Vijitha Ranjan mentions in her ethnographic study on migrant children, is “notions around the fixed neighbourhood, regular attendance, disciplined routine, everyday clock time regulation and long-term developmental milestones towards adulthood and the hierarchies that these allude to.”Footnote 38
Schools also make demands on children’s time spent outside of school, expecting them to supplement classroom learning with learning during non-school hours, disregarding children’s other demands on time. For instance, the time spent by children like Abhishekh in caring for their families or children with chronic illness, like Saba, who might need longer rest hours to take care of themselves. In her book Caring Democracy: Markets, Equality, and Justice, Joan Tronto argues that a just and equitable world can only be achieved through the centring of care as a central value around which life and everyday living is organised. This, she writes, would involve reordering time in ways that make living better for people as opposed to organising time around economic productivity.Footnote 39 Schools could become more accessible and equitable by valuing the time spent by children in caring for themselves and others and by reorganizing around children’s lived spatial temporal realities.
7. Marginalised childhoods
Unlike Girish and Abhishekh, Rakhi had lived in her mother’s natal home since she was a baby. Her father left soon after marriage when he found out that her mother had a diagnosed mental illness. Her mother was pregnant with her when he left and Rakhi grew up never knowing him. Growing up with her mother, aunt, and grandparents meant that she experienced a comparatively stable and predictable space–time. Her mother’s natal home and the presence of several adult women meant that she was not required to take up additional care work in moments of crisis or her mother’s heightened care needs, thereby insulating her from disruptions in her schooling. Rakhi mentioned the same feeling of something “missing” from her life as Dhiren, who would escape home to get by. The outside world would not have been as easily accessible to her as it was to Dhiren because he was a boy; so, Rakhi turned inwards and tried to put all her energy into studying. She told me:
I would just study. I thought that if I study well, I would get somewhere, I would do something. Which is totally vague. Because it’s not like if you study, something will happen. But yeah, that’s what I felt. Studies helped …. And this sir, who used to teach me. He was like a father figure to me. He would teach me, and he would guide me. He instilled all the good qualities in me, like studying.
Rakhi’s upper-caste, middle-class background placed her in a home environment that was conducive to the inculcation of “good qualities like studying.” Additionally, a literate and financially secure home environment gave her access to private tutoring. Girish’s absence from school for long periods during his mother’s illness, when he moved with her to her natal home, was also supplemented by private tutoring and a literate home environment. He told me:
My grandfather was a teacher, and therefore my studies were looked after. So, yes, there were some effects on my studies, like I could not go to school for two or three months. I guess till I was in class 8, I used to go and stay there (mother’s natal home). There, I had a tutor who used to teach me. Because when I was not there, the classes would go on, and I would miss out quite a bit. So, I used to take tuitions. I had private tutors who used to teach me in class 8 or 9, and even in class 7. So, it was their idea that I should have a tutor even in my mother’s natal home. To keep me engaged, otherwise what was I supposed to do all day?
These cultural and economic resources were not easily available to children such as Abhishekh and Saba, who come from lower socio-economic families and non-dominant communities. Formal schooling is a space historically occupied by “children who are predominantly male, upper class, upper caste, and belonging to sedentary families.”Footnote 40 Despite the entry of children outside of these categories in larger numbers into the school system, given the enrolment drive of the past decades, schools continue to cater to this ideal norm and its values. The ideal norm; upper-caste, upper/middle-class, able-bodied, male children are those who experience the school as a familiar space, continuous to their home environment and are therefore best suited to fit into the schooling system and succeed.Footnote 41 Children who do not embody these social positionalities are devalued, alienated, and required to assimilate the cultural values of upper-caste, upper/middle-class homes, or fail within the schooling system.
In her ethnographic work on first-generation Dalit students, Balagopalan discusses teachers’ construction of Dalit children’s home environments as inadequate for academic learning and the blaming of Dalit children’s difficulties in school on their parents’ lack of interest in learning.Footnote 42 Indeed, educational policy formulated on upper caste values reproduces caste privileges in schools.Footnote 43 In her essay on Adivasi experience of education, Shivali Tukdeo writes, “schools participate in acts of erasure, appropriation and coercion of subaltern populations.”Footnote 44 Adivasi children’s education in Ashram Schools, involving their dislocation from their familiar physical and cultural spaces, she writes, is premised on the construction of their cultural and home environments as inconducive to learning.Footnote 45
Research has also highlighted the importance of parents, especially mothers, in keeping marginalised children, such as children from poor families, girls, and disabled children, in school and their faith in their children’s schooled futures.Footnote 46 Schools assume children come from homes that are conducive to learning, that parents will be able to supplement their children’s learning at school with academic help at home, or by investing their economic means into private tutoring or private schooling, where their children can receive quality education. It also assumes that parents possess cultural capital that is required to ensure that children are enrolled, present, and performing in schools.
Parents’ ability to care for their children at home in ways that benefit them in school, or rather parents’ involvement in their children’s lives, comes to be recognised as “caring” when it provides children with a competitive edge over other children in school. This form of care is restricted to their immediate material and cultural possibilities.Footnote 47
Rakhi and Girish’s upper-caste, middle-class positionalities were instrumental in ensuring that they were able to participate successfully in schooling, and/or, like Dhiren, could be absorbed into the formal workforce. Dhiren told me he did poorly in school and college until his father passed away.
I wanted to escape home. So maybe I used to leave in the morning, and then I used to come back at 11 or 11: 30 at night. I wanted to avoid the home environment. When I was at home, I would feel this subconscious tension, you can call it anxiety …. Practically speaking, after my father died, I felt relieved…. It was a psychological relief for me because I had to handle only one person and not two people. After his death, my tendency to escape home reduced, and I was pulled to my home. My character changed. After that, I was more focused towards getting a job and getting my career going. In my mother’s case, when she was well, she did a lot for me. She kept her job through a lot of difficulties. I was dependent on her. My mother did all this for me, so I am indebted to my mother.
Being the assumed subject of schooling, Dhiren had the cultural capital needed to fit into the schooling space. His cultural capital meant that his school could accommodate his absence and poor performance, and neither these nor his mental distress pushed him out of school. Moreover, he had access to the outside world to escape the troubles of home, which was hardly available to girls like Saba or Rakhi. Dhiren told me, “I had many hobbies like astrology, theatre. I acted in many plays. I also learnt direction. Yeah, I used to read, collect stamps, watch cinema. I used to love to do these things.” Maternal disability did, however, make the everyday experience of schooling of the more privileged participants complicated or difficult and shaped their schooled subjectivity in specific ways; for instance, Girish mentioned not being able to do as well as he would have liked during exams.
Earlier I used to stand first in class. Since class six, I could not because I could not study half the time. I used to stay away from home. So, this change had an impact because I felt that I am not who I used to be before. So in our friends’ group we used to joke around and have fun, but sometimes they would joke that I don’t study anymore. These things used to happen but it’s okay. I never bothered too much about these things.
While Girish can look back at his schooling years and remember them as never being too bothersome, or Dhiren feels “indebted” to his mother for her support, someone like Saba, who is not the intended subject of the schooled space, is pushed out of school and left blaming her mother, and continues to be resentful many years into adulthood. Within a context of neoliberalism, patriarchy, and state neglect, where care is gendered and contained within homes, it is Saba’s mother, a poor Muslim disabled migrant woman, who comes to assume the sole responsibility of educating her.Footnote 48 Having been unable to take on this responsibility adequately because she is not well, she bears the blame for Saba’s exclusion from school and the everyday precarity Saba and she exist in. Saba said to me, “Agar meri maa achi hoti toh hum bhi acche hote. Samjho ki unke wajah se mera jindagi bhi barbad ho gaya” (If my mother were well, I would have also been well. Because of her, my life is also ruined.)
8. Caring homes and the assumed subject of schooling
“Agar meri maa achi hoti toh” (If my mother were well) is a phrase that Saba returned to many times during the interview. While Saba’s precarity and everyday debilitation left her desiring a world where her mother is well and the possibilities that such a world could unfold in her life, her narrative also begs another question. What possibilities could unfold in a world where Saba and her mother, with all their bodily vulnerabilities, are desired?
Through a focus on maternal disability and centring of the care relationship, this article makes visible the school system’s reliance on care provided by families, specifically mothers, in achieving children’s enrolment, presence, and performance in schools. The article attends to the specific ways in which non-normative care arrangements and a care deficit at home disrupt children’s schooling. The centring of the lived realities of diverse childhoods and schooling of children with experiences of maternal disability makes visible the caring home as a central normative assumption of schooling. Caring home here refers to homes that can provide the care, support, and finances their children need to enroll, be present, maintain academic performance, and complete schooling. That is, homes that are constantly able to cater to their members’ functional and emotional needs. Homes that offer their members a stable and supportive affective environment, where children’s emotional and bodily excesses can be contained so that they do not leak onto their school space. Homes that can organise and contain their care needs within themselves without exposing their members to uncertainty and precarity. Homes that offer their children linear and stable spatial-temporalities. Homes that are invested in upper-caste cultural values, are literate, and offer their children academic support.
What then would it mean to recognise that not all children come from caring homes, or that most children do not come from homes that can care for them in these highly specific and very demanding ways in which schools require them to be cared for by their families? What would it mean to recognise that not all families, especially mothers, are in the position to invest time, energy, and money into their children’s schooling because of disability or otherwise? What would it mean to centre the relational intersubjective embodied vulnerable body as the desired body of the school space?
As long as access to schooling is contingent on the provision of privatised and individualised care, such care provided to individual children by their families will only increase inequality and exclusion in schools. Here, caring well for children, or rather what counts as caring, is the families’ ability to provide their children a competitive advantage over other children.Footnote 49 A move towards inclusive schooling would require acknowledging that experiences of schooling is shaped by children’s differential access to care. This calls for a more equitable distribution of care responsibilities and the provision of social care for all, especially those who are dependent on others to meet their care needs, like children and disabled people, and also those who provide care, like mothers, disabled not.
Finally, the article contends that a decentring of normative childhoods through the centring of narratives of children like Saba who are multiply marginalised opens up education as a site of collective justice. Such that any demand for disabled children’s access to education can be conceptualised broadly to encompass a wide array of access needs. So that when we think of disability, schooling, and access, we think of children who cannot attend schools because there are no ramps, no accessible bathrooms, no accessible print material, but we can also think of children who are sick, in pain, children with tired bodyminds, children who cannot go to school because they have to go to work, children who cannot because they are not allowed to, children who have to stay at home to look after their families, and children who cannot stay at home because their families are on the move. We can think of the children who are present in school but cannot speak, or speak but do not always make sense, or children who have to hide their identities because they are culturally devalued or reveal them at the risk of further marginalisation. Not to mention that children can and do fit more than one of these positionalities. It certainly means that any commitment to education for all would necessarily entail careful listening to the diverse childhoods as valid and valuable and would be impossible to achieve without a commitment to first make care accessible to all.
Author contribution
Writing - original draft: S.B.
Conflict of interest
The author declares no competing interests.
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