The Limits of Caring: Who ‘Cares’ at all?
By Navneet Sethi
Being born with an orthopaedic challenge, the dynamics of caring has been inexorably inclusive for me. Born to parents who embody the experience of unconditional love at its best, I am interested in trying to explore the multiple dimensions of the concept of “care” itself. Through this article, I will try to share ideas that extend the definition of care as viewed from the perspective of not only a care receiver but care giver as well. These dynamics of care need rethinking and extension to include the point of view of the care giver as well. If the care receiver has the rights as someone who is dependent, then the rights of the care giver also need recognition. Extending the realm of caring beyond the family, I am interested to know more about the rights of both the care giver and receiver bound by the economics of care as in a patient-nurse relationship.
At the most basic level, the relationship between parents and children embody the fundamentals of caregiving involved in any relationship marked by the physicality of the material world. Parents are our first caregivers in terms of the dynamics of caring. Parents are expected to be unconditional in their caring for their children. Unconditional care and concern and effort towards the blossoming of the children are regarded as most essential and a constant element of parenting. But, is unconditional love and care not dependent on the nature of the personhood of the parents? Also, the dynamics of caregiving relationship involves a given belief that the children are the ones who are always care recipients. Parents are regarded as caregivers, while children are viewed as receivers.
Is the physicality of the ‘bodies’ of children the natural assignee for the role of caregivers to parents? What is the definition of a caregiver? Is the idea of ‘care’ and extending the experience of ‘care’ to the wellbeing of children dependent upon and decided by the difference in sizes, in forms of the children? What is the definition of ‘care’? Is ‘care’ related to physical, emotional, social wellbeing of the care receiver? If that is so, is there a criterion or should there be a criterion to decide the eligibility of certain persons for the roles of being parents? If ‘care’ means wellbeing, then the wellbeing of the care receiver requires sincere and unconditional care which can only be provided by persons, who possess the qualities of sincerity and unconditional care. Sincerity and unconditional care are also the qualitative parameters that the care receiver looks for in a care giver.
This possible expectation implies a significant observation – human beings are always in a state of making, so a person in the role of a parent will not constantly be sincere, kind, and unconditional in care because conditions or circumstances or experiences can have a tangible impact on the person that can affect the balance of the relationship of ‘care’. If we need to accept the reality of transitionality in the personhood of parents, then we need to include the reality of change and ambivalence in the attitude of family and paid nurses also in their roles as care givers.
I say all this because I am very keen to understand the nature of caregiving relationship within the dynamics of family – where family members are not believed to be bound by economics but by emotional bonds as care givers – and the dynamics of bonds forged with nurses employed as paid givers of care.
Born with an orthopaedic disability that caused partial paralysis of both lower limbs and left upper limb due to scoliosis and resulted in COPD (Chronic Obstructive Pulmonary Disorder), which requires me to be dependent on an oxygen cylinder 24/7, dimensions of caregiving and receiving come to me with the entire deal of life itself. Fortunately for me, I have been gifted with the most wonderful and supportive family, and here I mean not just parents, but my siblings as well. They epitomise the phrase ‘unconditional love’. Though each child gnaws into the resource of time expended by parents, the irrevocable reality of ‘care’ is that the presence of a person with special needs in the family slices time off from the share of care ‘able’ siblings should be getting.
Notwithstanding the bond of care and affection, the reality of the physical world changes the bodies of the caregivers as well. My parents are now senior citizens in their 80s while I am 52. If my body is showing signs of age, should I expect them to be unconditional and unwavering in the expression of their love and care for me? Their definite materiality is brought to the fore with the change in both my condition and their conditions. From using prosthetics, I have now acquired the status of being a wheelchair user while my father with a knee replacement surgery walks with a stick and my mother negotiating with arthritis wobbles through domestic chores battling extreme pain.
In such a situation, what would be the definition of ‘caregiving’? As my own physical condition has wavered between a partial independent living and moving towards a nurse regulated activity, I have had to manage with bristling insecurities about impairments of my body. My parents’ inability to actively perform and cater to my needs at times is interpreted by me as indifference. My increasing bouts of self-pity made me reflective and I consciously recognised that the ‘caregivers’ roles had to be changed. I must now negotiate with their ageing bodies, their spasms of irritation, when they are unable to cope with my needs that require physical strain of them.
Interestingly, the concept of ‘care giving’ is defined as physical care. So, even though the parents understand their own physical diffidence and fraility, the status given to me is still that of a care receiver even though they are dependent on me for technical support vis-à-vis their lack of confidence with technology and the inescapable crucial status that technology has come to play in our daily lives. I wonder if there seems to be emerging a stereotype of a caregiver as someone who is physically fit and necessarily able-bodied. Is ‘care’ giving and receiving dependent upon the ‘able-bodied’ and ‘disabled’ materiality of bodies? Am I not caring for my parents as they need support to manoeuvre through the maze of technology – online services, netbanking, smartphones, and negotiating with loss of hearing and memory as well?
Taking care of children and family and taking care of a patient necessitates love and sincerity. A nurse is paid to care, while a homemaker is not. This brings to me an interesting line of thought about the caregiver and care receiver relationships. Is there a politics of usefulness involved in a relationship of care? Seeing the reality of age-driven challenges, I wonder how different my situation would be if I had not been employed and could not have afforded a full-time nurse, a professional caregiver for myself? Despite my parents’ undisputed love and care, the constraint of financial resources they may have faced as pensioners could have burdened them in getting me a paid caregiver. Working with constraints of their age, as well as the subsequent sense of guilt coupled with physical exhaustion, they would have had to struggle to be unconditional towards my special needs. At the same time, they would also have to grapple with the conditioning of emotions beleaguered by rattling nerves and hammering joints, and then before long there would be irritation, anger, tiredness, and despondency on both sides of care – giver and receiver.
The complexity of human responses to such situations is that it makes us question those ideals of care and love and sincerity that avoid embracing the ambiguity of humanness in all of us. Does our decision to withdraw support – emotional and professional care – from a person due to a given rationale by the examining doctors, make us question the idea of fate? Who decides that it’s time to let them go? Does such a decision entail that we whisper to each other, “He is in extreme pain, so let this end soon”. Is this not taking over the power to control life itself of someone who is under one’s control? Does the presence of control politics in the realm of ‘care’ experience reveal the politics of the ‘care’ sector as well? But, is a wife selfish when she wishes an end for her husband who has had a multiple organ failure? A lady once sobbed, “What should I pray for when I see there is nothing left?” Is this lack of faith or just a human being simply drained of all energy?
I have moved through an array of professional care givers, nurses and see this relationship also as not very different from other unpaid relationships, marked by equal notes of discord and harmony. The politics of identity is as much a real factor in the context of unpaid care giving and receiving as it is in the paid alliances. The nurse decides the change in the routine of the patient without consulting the patient or the patient’s family – is this not a relationship marked with the elements of control and subordination?
The concept of dependency is read as interdependence within the realms of family bonds while the same dependency is read as submission and control in a paid relationship. Yet, the simmering sense of disquiet that marks all kinds of relationships does impinge upon the dimension of care giving and receving within the realm of family as well. It’s the vulnerability of the materiality of the human body that creates the dynamics of the caregiver and receiver relationship. There is a tangible subtext of politics of body within the the material world of ‘care’.
Painting: Matt Sesow
 Award winning short film, Teaspoon (2015), directed by Aban Bharucha Deohans, explores the complex and ambiguous aspect of care giving and receiving with poignant sensitivity.
Dr. Navneet Sethi is an Associate Professor at the Centre for English Studies, School of Languages, Literature and Culture Studies, Jawaharlal Nehru University, New Delhi. She teaches U.S. Multi Ethnic literatures, Ethnomusicology and Disability Studies. She holds a Ph.D. from the department of Humanities and Social Sciences, IIT, Kanpur. Selected for the U.S. State department IVLP (International Visitors Leadership Program), Navneet has visited and lectured at colleges in the U.S. on American Studies. She is trained in Hindustani Classical Vocal Music and brings her interest in music to teach courses on music and literary studies. Her experience and interest in disability issues has led her to develop the first four credit course on ‘Representation of Disability in Art’ in Jawaharlal Nehru University.
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