Guest-Editorial – Conceptualizing Care: Between interrogation and negotiation

By Nandini Ghosh and Shilpaa Anand

The concept of care has, in the last few decades, been problematized as ‘taking responsibility for’ people who are assumed to need care as they are unable to exert choice and/or control. A Disability Studies perspective promotes empowerment of disabled people by highlighting and critiquing discriminatory and disempowering practices and structures that inhibit full social participation and citizenship of disabled people. There is, nevertheless, increasing recognition of the fact that we are all constituted by relationships with other people. When we first circulated a call for entries for this issue on care and disability, our interest was in eliciting essays that capture the complexity of care-receiving and care-giving. Given that we both research in the field of disability studies, we were concerned with recovering what has remained relatively unfamiliar, so also unknown, the epistemic perspective of recipients of care. On receiving entries for the issue, we learned that while experiences of care-receivers with disabilities are indeed undisclosed, there is a lot about care-giving in Indian contexts of care, primarily familial and informal, that is underexplored. The narratives included in this issue closely examine the interrelations between disablement, care, and interdependence in robustly discerning ways.

Many of the pieces in this issue respond to the popular presumption that having a disability means only being the recipient of care. While acknowledging this, some writers, those with disabilities and receivers of informal and formal types of care, express their desire to reconfigure this singular yet popular definition of care. The fact that the type and degree of impairment impacts the physicality of people’s bodies is made explicit in the writings of Sameer Chaturvedi, Yogesh Yadav, Navneet Sethi, Kapil Kumar, and Namitha Kumar. While Yogesh’s essay outlines the emplotment of disabled people in care narratives as passive recipients of care, Kapil’s essay, which emphasizes unequal power relations that operate in care-receiving relationships, illustrates how companions of blind people are often presumed to be their care-givers. Similarly, Sameer’s reflection on maternal attention and the frustrations of being dependent affirms the imbalance of power that attends on perceptions of needing care and actual requirement of care within the disabling social environments that surround all of us. Navneet and Namitha have disabling conditions that required intensive care early in their lives, which changed as their capacities evolved and they grew into varied levels of independence. Both their pieces reflect how the physicality of disabled bodies puts them in an automatic child-like relationship with all care-givers, despite having asserted their independence and performing the carer role themselves. These narratives lead us to believe that care, just as disability, is predominantly composed within the visual field.

While care highlights the concept of dependency, it also points to a range of power dynamics that operate within the carer-cared relationship. Many of the narratives confirm that care-giving is never considered to be an aspect or responsibility of disabled people. Sameer, Kapil, and others discuss how, despite the fact that care-giving is an intrinsic part of being human, many disabled people are denied care-giving roles just because they have disabilities. When decisions about care-giving are unilaterally assumed by non-disabled family members, it often results in situations where care recipients experience themselves as burdens to their caregivers. Frustrations related to being cared for and being a ‘burden’ in everyday interactions weighs heavily on the minds of respondents in Venkatesh Boddu’s essay as well as in the narratives by Sameer, Kapil, and Navneet. Shruthi V. and Anjum Khan’s article offers a counter narrative to this assumption by framing marriages between disabled people in terms of the interdependence of care, by highlighting mutually affective bonds that connect, knot, fasten, embrace, or fetter two people simultaneously. What emerges in this positioning of care is that in relationships of equality, where both partners have disabilities, the question of care operates differently than in relationships between a disabled person and a non-disabled person. The negotiation of power and care among persons with disabilities implies contradictions, where intimate interdependence signals culturally specific power relations and constraints alongside prospects and opportunities. This is corroborated by one of Shruthi and Anjum’s respondents, who distinguishes between care-giving that is parental responsibility and care-giving that is enmeshed in spousal love. One signal conclusion that the essays bring us to is that decisions regarding who provides care or how it should be provided are rarely made by care receivers and this results in frustrations, anxieties, and inhibitions for the disabled recipients of care. Care is consistently conceptualized as unidirectional, with little scope for exchange of the care-giving role, except in situations like Shubhangi Vaidya’s where we see her son, who is autistic, making shopping lists for his forgetful mother.

Another feature that dominates the collection of narratives is that familial and communitarian ethics seem to subsume notions of care within the Indian context. The family emerges as the primary site for care, including the management of impairment, since most care is provided informally in families and communities and has invisible costs attached to it. The construction of the figure of the mother as the repository of unquestioning devotion and unfathomable care becomes the most important theme in terms of care and disability. Writing at the intersections of the disability and feminist discourses, Shubhangi Vaidya’s piece notes how mothers who are blamed for the birth of children with autism are simultaneously assigned care-giving duties. Manoj Joseph and Srilatha Juvva also confirm that notions of womb blame and womb guilt is experienced by mothers who are morally devalued for birthing a disabled child; it is believed that they passed on disability to their child. Mitu De’s article on care for children with autism considers the all-important experience of ‘care-giver burnout’ which is common among close family members of children with autism, particularly among mothers. Sujitha’s essay underlines relations between non-disabled and disabled siblings in the context of care, maintaining that she and her sister know that they must step in to fill their mother’s role in caring for their brother who has a developmental disability. What is striking here is that, they may not be able to negotiate their care-giving roles as siblings but must become proxy mothers in order to take over as care-givers. Nishi Pulugurtha’s essay about her mother’s life with Alzheimer’s is a gentle reflection on the transitions that occur in a mother-daughter relationship and how she learns to adapt to her mother’s acquired condition. Gendered conceptions of care are known to disrupt cohabitation patterns as well, because all women members including daughters-in-law and sisters-in-law who enter families through marriage feel they are pressured into caregiving. Venkatesh Boddu’s piece on disability and care-giving in the fluorosis affected areas of Telangana vouches for this.

While people involved in acts of care-giving and receiving are automatically configured in terms of parent-child and gendered relationships, they are also constituted as sexual or asexual beings by these acts. Soniya’s and Venkatesh’s work bear witness to the sexual constitution of caregivers and care receivers. One of Venkatesh’s respondents reveals how she is framed as promiscuous by a male cousin who was enraged by her rejection of him when talk of marriage came up. School teachers and parents in the BUDs schools, it appears, create tacit norms of who can provide personal care to whom based on factors such as marital status of women teachers, who are care givers to young men. The vulnerabilities of caregivers and the risk of devaluation and domination are evident in Manoj Joseph and Srilatha Juvva’s essay which frames the stigma that affects family members who are care givers. Ritika Gulyani’s narrative makes a more critical intervention on how care givers learn to adapt themselves to the accommodations required by family members with disabilities. Assuming the position of a sibling-caregiver, much like Sujitha, Ritika’s account is sensitive to the ways in which her brother is conscious of not being ‘normal’ and how that is constituted by daily interactions of care receiving.

The essays enclosed in this collection of Cafe Dissensus respond to conceptualizing care in other ways as well – Sudarshan Kottai and Shubha Ranganathan’s piece reconceptualises care as distress-sharing, where the inherently hierarchical notion of care, in the context of mental health, is replaced with a mutual exchange of distress experiences. Their fieldwork reveals that the line between classifying someone as homeless and categorizing them as ‘homeless mentally ill’ is indistinct at best, therefore dubious. Venkatesh’s essay enables another explication of interdependence where fluorosis-affected people talk about how their caregivers are in reality dependent on them because of the economic worth they bear by virtue of being classified as victims of the chemically poisoned environment by the state. This conceptualization of people affected by industrial disasters as responsible citizens who give back to the community is evident in Sujitha’s essay as well where survivors of the toxic endosulfan participate in mobilizations that force the government to act on their rehabilitation promises. That disabled care recipients are also providers of emotional care is a factor that Yogesh’s essay accounts for as he describes a romantic relationship that was only popularly viewed as a one-way care-giving relationship.

Departing from the discussion of care-receiving and care-giving in the human world, Anoopa Anand’s photo essay presents us with diverse aspects of care-giving across species when the disabled recipients are dogs requiring intensive or periodic medical and emotional support. Anoopa’s photo essay documents the complexity of disability in the animal world – the ways in which a eugenic investment and human greed to breed pure breeds rejects the ‘problem children’ this greed engenders. How is the emotional transaction in care across species different from care-giving that is involved in the human world? Affirming discrete aspects of care-giving, this piece dwells on the context-sensitive nature of care-giving, such as in the case of the Labrador Serene, where care-giving entails stepping away and withdrawing constant attention. Anoopa’s, Nishi’s, Shubhangi’s and Ritika’s contributions elaborate on the self-reflectivity that caregivers in different contexts of care undergo as they learn to take the lead from their care recipients and acquire a continuously negotiated sense of caring for.

Guest-Editors:
Dr. Nandini Ghosh is Assistant Professor of Sociology at the Institute of Development Studies Kolkata. She has a Ph. D in Social Sciences from the Tata Institute of Social Sciences in the broad area of Gender and Disability Studies. She is engaged in research on issues of marginalisation and development from a gender, disability and development perspective. She also teaches qualitative research and sociology for M Phil courses in IDSK and is a guest lecturer at the Department of Sociology, Jadavpur University in Kolkata. Her website.

Dr. Shilpaa Anand teaches in the Department of English at Maulana Azad National Urdu University in Hyderabad. Her research is in the area of disability history and disability and culture. She may be reached at shilpaa.anand@gmail.com.

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