Since my childhood, I saw my mother constantly involved in caregiving responsibilities for my younger brother, who was born with Down syndrome and speech impairment. Her commitment extends beyond the familial setting and household responsibilities. Every day, she accompanied him to a special school situated in another district, which is about 75 km by local train from my home, as my hometown lacks facilities for children with disabilities. However, she is not alone on this journey. A few other mothers with children with disabilities from the town joined her on this train ride. Over the past decade, an intimate relationship has formed among them through their shared experiences and mutual support. They have been advocating for their children and navigating their responsibilities to secure better educational opportunities. As someone who was raised in a family with a disabled child, I have closely seen how a graceful acknowledgement of disability by the family can be the very first step to transforming things in society. This article seeks to investigate the formation of a care network among the mothers of children with disabilities and their experiences in a socio-cultural context, as well as to extricate the discussion away from the psychological and cognitive scholarship on disability.
The Indian state of Assam is located in the geographically underdeveloped Northeastern region, unlike the mainstream states of the country. The state has a population of around 3.73 crores. The disabled population in the state consists of approximately 2% of the state’s total population. The state has limited infrastructure and development for the disabled population. There is a dearth of special schools for children with disabilities. With the limited number of Non-Governmental Organisations (NGOs) and special units under the private schools, the disabled population and their families in the state experience inexplicable trauma, pain, and anxiety on an everyday basis. Oliver (1990) states that with the emergence of capitalism, disabled people are managed through an organised bureaucratic system rather than community support. This system became more rigid when medical experts and government officials established strict guidelines about who is considered disabled. Moreover, the prevailing political framework expects everyone to become productive and independent citizens. It eventually leads to a situation where children with disabilities are primarily viewed as dependent on family members or caregivers. In this context, women are usually involved in caregiving responsibilities and bring their children to NGO-based special schools in urban areas in Assam. However, women in rural and semi-urban areas face this crisis immensely, which goes on uncontroversially as if everything is right with what we preach and practice. Their children require lifelong care and remain dependent on them for primary care, education, and need-based therapies. Their problems are further compounded by issues of India’s caste, class, religion, ethnicity, gender hierarchies, and institutional structures of social exclusion. For instance, women with disabilities often experience gender-based violence, abuse, and discrimination than non-disabled women. In the absence of proper institutional support and disability services, they are forced to form a world of their own. They form a network with people with similar experiences when it comes to experiencing and living with the realities. This is a group of mothers in the modern state whose children are systematically made to ask and desire much less than a non-disabled child desires or demands. Ginsburg & Rapp (2013) proposed this term as a new ‘kinship imaginary’ to emphasise how families associate with disability issues and engage in the cultural imagination. They bring their own stories as mothers of children with disabilities to address the experience of disability in their fieldwork analysis. But how do mothers of children with disabilities negotiate these issues on an everyday basis in an underdeveloped region? And what is the nature of their engagement with their children within the limited opportunities that led to forming this network?
Oliver (2014) propounded the emancipatory approach to studying disability, which engages with disability issues, such as relationships with disabled people and listening to their voices about their experiences. This approach not only enables relationships with disabled people but also helps us to know about their life chances and everyday experiences. As part of my data collection for doctoral research, a significant proportion of mothers reflect on their experiences of disability in the rural and semi-urban areas of Assam, whereas only a few fathers are associated with their disabled children. These mothers present a slightly different picture of what Ginsburg & Rapp (2013) termed the ‘kinship imaginary’ in contemporary US society. They share the social reality through which they find common ground and mutual understanding among the mothers of disabled children. They often felt stigmatised, whose children have conditions like Down syndrome, cerebral palsy, speech impairment, etc., because these conditions are objective markers in a society where children are seen as unproductive and burdensome for the family. They often receive comments and suggestions from neighbours, friends, and relatives about their children in everyday social life. Ghai (2016) notes that although disabled children and parenthood are usually valued within the family system in India, there is minimal awareness of disability in society. Moreover, these comments on the children’s conditions are based on societal norms and beliefs. People in India often believe that past karma is responsible for such conditions; hence, there is always a negative attitude toward disabilities. They believe that if children can’t talk or interact with others, they cannot be considered ‘normal’ in society. Moreover, if that child is a boy, there are some assumptions among elderly people, such as ‘boys speak late,’ or ‘things will be better if you visit that temple (a religious place),’ etc. Not just with those comments in social life, some young mothers felt stigmatised by several incidents and difficulties they were going through when attending family events or any public gatherings. They express how negative reactions significantly affect those whose disabled children are in the initial stage. These negative reactions from their own relatives sometimes lead to self-blame among themselves. Reema, a 34-year-old mother, stated,
“When I learned about my daughter’s condition first, I started exploring special educational institutes and need-based therapies in the city as suggested by the medical professionals. But at the same time, I also had to receive various comments on my daughter from my relatives in family gatherings that made me feel lonely and hopeless.”
In these circumstances, the nature of stigma is presented by the children’s conditions and symptoms, and hence, these young mothers need to cope with the effects of stigma to normalise situations outside the world.
In the process of their journey with disabled children, mothers form a group with others, especially in special schools, when they bring their children and meet other parents with similar experiences. They come together to take up advocacy efforts for their children. Nomita, a 53-year-old mother whose 23-year-old son with Down syndrome is enrolled in a special school, narrated,
“I have been bringing my son to this school for 15 years. Being associated with other mothers with similar experiences has immensely helped my son and me as a mother with no social and institutional support. As a mother, I also learned about the caregiving process related to disability in our day-to-day lives. It helped many parents like me who are dealing with disability issues. Not just that, earlier I had no idea how to obtain a disability certificate, how to apply for disability-related scholarships, etc. My family members had no idea about these. Since I met other parents here in this special school, we helped each other in different ways in our everyday lives, which I could not have done by myself.”
Therefore, these special schools are not just for the development of children with disabilities, but also serve as a platform to effectively help form solidarity among mothers. One of the main issues they pointed out was that they were solely responsible for the caregiving duties for their children, as they lacked any sort of familial support whatsoever. The care responsibilities often fall upon them because of the patriarchal structure of the family, which puts unpaid care and household responsibilities on women. The situation further worsens when, due to the withdrawal of the state from welfare activities, the burden of caregiving responsibilities for disabled children falls on the women in the family (Dalley, 1996). Ryan & Runswick‐Cole (2008) note that women do that because, having a disabled child, their competence is often questioned in society, and hence, they are constantly involved with disabled children’s responsibilities, which makes them compete to become good mothers. Similarly, in the context of Assam, women felt that their role extends beyond the mothers of non-disabled children because of their nature of engagement and care responsibilities, which are not often recognised, and their efforts are not economically rewarded in society. Women, especially those in rural and semi-urban areas, face numerous obstacles in their everyday lives that can sometimes lead to discouragement when interacting with their children. Their engagement is not just limited to their disability issues but also extends to following up with education and welfare services, dealing with social expectations from other people, providing care to children, and household responsibilities. However, a few mothers with disabled children in semi-urban areas provide care as professionals or take on occupations in the disability sector. For instance, they navigate their professional careers toward this disability sector because that would help them engage more closely and effectively with their children.
Since mothers cannot distance themselves from their children, they take on their own happiness and advocacy roles through innovative steps, such as creating care networks and fostering interdependence with other women. Through this bonding, they enrich each other’s understanding without institutional support and stand as a support system in difficult times. For them, the space of this group serves as a platform for openly revealing and disclosing their experiences of shame, disgust, and stigma. Moreover, children with disabilities and their embodiment cannot just be understood in terms of their conditions; instead, they can also be understood as their relationships with their immediate family. In this context, mothers’ emphasis on forming a new care network and their specific sociocultural issues within the family and community significantly impact their social interactions. More than the children’s particular conditions, mothers’ advocacy, given the limited opportunities and lack of social and institutional support in the state, occupies a distinct and meaningful role in their experiences and social reality. As Ginsburg & Rapp (2013) put it, ‘kinship imaginaries require continuous reinvention, from rearrangement of caretaking responsibilities in the household to the production of family narratives’ in a specific socio-cultural context. May this advocacy effort by mothers create an inclusive society to recognise their caregiving responsibilities and that disability is not an individual issue of unfortunate families, but rather is a socially constructed phenomenon. Further investigation into how social structures of power dynamics operate among mothers and how socio-economic conditions impact their lives should be part of this work.
References:
Dalley, G. (1996). Ideologies of caring. Macmillan Education UK.
Ghai, A. (2016). Rethinking disability in India. Routledge.
Ginsburg, F., & Rapp, R. (2013). Disability worlds. Annual Review of Anthropology, 42, 53–68.
Oliver, M. (1990). Disability and the rise of capitalism. In M. Oliver (Ed.), The politics of disablement (pp. 25–42). Macmillan Education UK.
Oliver, M. (2014). A sociology of disability or a disablist sociology? In L. Barton (Ed.), Disability and society: Emerging issues and insights. Routledge.
Ryan, S., & Runswick-Cole, K. (2008). Repositioning mothers: Mothers, disabled children and disability studies. Disability & Society, 23(3), 199–210.
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Pariz Pikul Gogoi is a FARE Fellow at the Department of Humanities and Social Sciences at the Indian Institute of Technology (IIT) Kanpur.