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My disability cannot stop me from becoming a caregiver

By Kapil Kumar

In today’s neo-liberal societies, money is given more priority over human emotions and values. This type of social structure has not only affected the economic conditions, but also, the social relationships among individuals. In such a scenario, the relationship between care receiving and care giving has become quite complex. Usually, in almost all the parts of the world, it is believed that only non-disabled persons can be good care givers, and that disabled individuals are born as and can only be care receivers. A non-disabled person, because of “physical fitness”, can be a person who could in fact look after all the needs and demands of their mates. S/he is the one who, because of the privilege of “bodily features”, can provide full assistance to others. The responsibility of looking after the family is considered to be the duty of non-disabled members alone. In other words, s/he is assumed to be the best care giver.

 But, this view of care giving is totally distorted. It gives importance to the tangible, leaving aside non tangible elements of the society. It comes out of a society, which has always been dominated by so-called “able bodied” people. It is they who have provided this society with all its norms. In such a society, how can we have a feeling of “us”? Here where there is no space left for us who are disabled! Where emotions and sentiments of human beings are taken for granted. All the customs and traditions are being designed and celebrated on the basis of conditions provided by non-disabled people.

When one attempts to comprehend who is to be considered as a “caregiver”, experts have provided a parochial definition of this concept. They state that “a caregiver or carer is an unpaid or paid individual who provides help to another with his or her daily living activities. Moreover, they argue that care giving is most commonly used to address impairments related to old age, disability, a disease or in the condition of mental disorder. This definition of care-giving ignores the value hidden behind this concept. Care giving should not only be seen in the context of impairments. In fact, humans in the span of their lives undergo emotional trauma, psychological trauma, and so on. Even in these situations care giving is required. If care is not provided on time to individuals facing such situations, it can in fact ruin or spoil their lives. One must also not forget the fact that the society is based on interdependence, where each individual is dependent on others for one need or the other. In such a situation, it is very difficult to decide who the caregivers and the care receivers are. People, who are care givers at one point of time, can become care receivers at another point of time, irrespective of their able-bodiedness or disability. In fact, human beings play the role of caregivers and care receivers simultaneously.

The concept of care also gestures towards power configurations within the carer-cared relationship. Generally, care recipients are assumed to be subordinate to the caregiver, as they are believed to be unable to perform their tasks, and as a result, remain dependent on their care givers. This is very true in the case of persons with blindness. It is not uncommon that many times the person assisting or escorting a blind person is presumed to be his natural care giver and the one who would decide for him when faced with a choice or even state his wishes for him. This argument of mine can be illustrated by referring to one of the scenes from the movie, Sparsh (1988), in which when the blind protagonist visits a restaurant along with his girlfriend to have a meal, the waiter hands the bill to the non-disabled girlfriend. The assumption here is that she is the care-giver. In this regard, I would like to cite one more example of a blind young woman, who was studying in one of the prestigious universities of the country. She recounted that often teachers would ask her sighted classmates about her needs and concerns rather than asking her directly. It implies that a non-disabled person accompanying a disabled person is automatically considered to be his or her care-giver. These types of situations, in fact, not only challenge the dignity of disabled individuals, but also, question their very existence.

Likewise, many times, it is observed that parents do not care for the choice of their disabled wards. Rather, considering themselves to be their natural caregivers, they make decisions for them, telling them what to choose. This situation applies not only to the decisions concerning their educational or employment prospects, but also, their marital prospects. The story of a blind girl who is highly qualified will be an appropriate case to cite here. She completed her Masters in Sociology in 2011 and got the coveted Junior Research Fellowship (JRF). Later, she got into State Bank of India as a clerk. Her parents wanted her to achieve these heights because they believed that with these qualifications as well as a good job with a steady income they could marry her off to a sighted boy, lettered or illiterate. The irony is that she finally had to agree to marry a boy who was younger than her and less qualified educationally.

Notions of care-giving and care-receiving are also determined by narrow definitions of able-bodiedness and masculinity, where ideas of protection and security get greater priority. It is assumed that a disabled man or a woman because of their biological ‘weaknesses’ would be unable to perform this task. It is thus believed that the sole responsibility of providing protection and security lies with men, when it is a question of gender equations, and with non-disabled people in context of caring for disabled people.

It is seen that in the name of care, in many cases, disabled wards feel over-protected by non-disabled care-givers. This over-protection has worked as a hurdle rather than a facilitator in the lives of disabled persons. Many disabled people who are talented could not exercise their talent because of this phenomenon of over-protection. They were kept at home and were kept bereft of educational and employment rights just because their parents were over-protective. Besides, in case of blind people, many times, there seems to be mobility issues when blind individuals are not allowed to move around independently by their parents, who are often their primary care-givers. This situation only gets worse in the context of blind young women.

In my view, in true sense, caregiving and care receiving are to understand the feelings of others, to respect the emotions of others, to have empathy towards others, and to have a spirit of associating oneself with others. On all these counts, it is most likely that disabled people fit the bill better. On the basis of my own experiences of interaction with disabled as well as non-disabled counterparts, I must argue that the sensitivity which is desired from an individual, in its fullest form, is intrinsic in a disabled person.

I have firsthand experience of some of the circumstances highlighted above. I have not been blind since birth. I acquired my disability in 1995, due to an accident at the age of 12. This accident brought multiple disabilities to my body. I consider that day to be the most valuable day of my life. It was that day which actually made me a human. Before that I could only claim to be sensitive, but now, I realize the value of pain and sensitivity in their actual senses. Now, I feel that I can understand the pain of others better. This disabled body of mine has taught me how to respect other’s feelings and sentiments, how to empathize with others. In my view, nothing else is required from a person besides the ability of being sensitive and sensible for becoming a good caregiver and a care-receiver.

In a nutshell, society is a web of relationships. All these relationships are interdependent on each other in one way or the other. In such a scenario, to attach narrow meanings of dependency and subordination to the concept of care-giving and care-receiving actually degrade the essence of these relationships. It poses challenges to the dignity and self-respect of many sections of society. It would be a great error to assume that disabled people are born as care receivers, and are unfit to take up the tasks as caregivers. To reiterate, society cannot negate the importance of intangible values such as emotions, sentiments, pain-sharing and so on in the lives of human beings. In this sphere, disabled people can be effective caregivers. This does not mean that disabled people cannot work as caregivers when it comes to more tangible care-giving. There are any number of instances of blind couples who take care of their children just as well as non-disabled people are expected to take care of their children.

At last, I would argue that to achieve an ideal society, it is expected that the concept of care-giving and care-receiving not be restricted to notions of dependency and subordination; rather, they could be replaced by notions of interdependence and humanity.

Bio:
Kapil Kumar has recently submitted his PhD thesis in Department of Political Science, Delhi University. The title of his dissertation is “Enhancing the Dignity of Visually Disabled Citizens: The Role of Govt. And Non-Governmental Organisations in India”. Being disabled, he has a special interest in issues of disability. In future, he is interested in working on a project related to the lives of disabled persons in India.

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For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.

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