By Lata Mani January 2004 Prejudices against the ill, disabled or aged have equally to do with our ideas about the well and able-bodied and what, for us, is a meaningful life It is probably just as well that she died, even though it was so unexpected,” says the woman who is trimming my hair. “She was pretty miserable, you know, couldn’t leave her bed, became incontinent. What kind of a life is that?” Her voice trails, leaving her question hanging in the air between us. My head is in her hands, so I feel it all the more necessary to exercise prudence in not delivering the sermon that is forming itself in my consciousness. I have found it increasingly difficult to bide my tongue when I hear such sentiments as those just expressed. “It was a mercy he died. This was no way to live. He used to be so independent! By the end he needed help with the smallest of tasks. It was sad, so pathetic to see that happen.” The reader could wonder if the speakers were not, after all, extending compassion to fellow beings in the throes of suffering. This may be so, but their statements equally well reflect a deep-rooted bias in contemporary society against those whose bodies refuse, on account of illness, aging or disability, to submit to decorum and respectability as currently defined. What is it that these physically challenged bodies represent? Why this fear and loathing of suffering? Why the desire to tidy away someone whose life does not conform to the ideal of independence, health, self-regulation? What view of life is contained in the amalgam of concern, fear and pity that is expressed when one encounters a life organised (or reorganised) by disability or dependence? When bodies do not confirm to the so-called perfection of the able-bodied, when they careen, lose balance, sway into objects, trip over themselves, insist on moving in directions and at speeds unexpected, some notion of order is disrupted. The loss of control flowing from the perceived chaos of unpredictable bodies gives rise to fear and anxiety. Certainly, genuine concern may well be present, but the shadow side of this compassion is equally a reality. It is odd that humans should cling to some conception of a fit body, one that can be disciplined at will. For it is precisely in relation to the body that we most intimately experience the centrality of change and impermanence. Bodies age, change shape, develop skills and even lose them. Why then are we surprised when a life takes residence in the territory of disability or illness? Are we afraid of what the future might hold for us? When we claim that the release of such a life into the eternal is a blessed event, are we projecting what we imagine to be a relief in such circumstances? Many of us would be offended at the suggestion that we believe a good life to be an able-bodied life. And yet we must come to terms with the extent to which this is an implicitly shared assumption. It is this that makes it perfectly legitimate for a person to reject a potential spouse if the latter were to be found to suffer from some ailment, even one that is treatable and non-communicable. It is also this view that makes it seem as though it were an act of charity when a person marries another despite knowledge of their medical condition. But bodies do not obey the dictates of society, even though humans will try to reshape, starve or punish themselves, and in other ways accommodate prevailing social norms. And in their waywardness, bodies offer us the opportunity to stop and reflect upon our assumptions about a good life or worthy existence. Many ideas are interwoven in this celebration of a fit and healthy body or one, which, though challenged, is able to be independent. The desirability of the well body is linked to the idealisation of independence. Even though all of us are absolutely interdependent on a daily basis, on a range of people near and far, known and unknown, independence is seen to define adulthood. Dependence is treasured in a baby or child. Adults revel in being able to provide for the smallest need or wish of a child. Dependency in adulthood, however, provokes quite a different response: a seeming regression. That which was touching at one end of one’s life is seen to be a regrettable development, even a shameful one, at the other end of our days. Certainly, loss of independence can be disempowering. One lives with a great deal less flexibility, since one is compelled to meld one’s routines and hopes with those of the persons upon whom one relies. But the shame felt at such disempowerment is entirely a consequence of the social attribution of embarrassment to dependence manifested by adults, especially those in their prime. It is small wonder, then, that disability and illness can also lead the person so challenged to feeling a sense of worthlessness, something that a child rarely feels on account of her or his dependence on adults. This sense of worthlessness is not simply an effect of the inability to approximate the ideal of independence, but is also a consequence of the enormous importance given to ‘doing’ in our society, that is to say, to a particular conception of activity. The kinds of doing or activity that we undertake are seen to have some bearing on the quality of life that we are leading. Those whose lives cannot exhibit the signs of action so defined consequently feel confusion as to the purpose of their existence. Take for instance, persons who are bedridden, house-bound or limited in the kinds of physical activity they are able to engage in because of infirmity or disability. The challenge of their situation often demands more of them cognitively and physically than people around them, but their efforts fall beyond the bounds of a narrow definition of action or doing. Their work to process, confront and live creatively with their situation remains invisible, unclassifiable. It is in this context that one can simply say about oneself or another: “What is the point of carrying on like this?” This pre-supposition is also at play in the statement: “I keep myself busy,” sometimes uttered by the ill or the aged or persons whose daily life does not exhibit the expected signs of activity given their age, gender or location in the lifecycle. Such an utterance indicates that despite outer appearances such a life has substance. The person is not, as it were, simply marking time. Yet the phrase, ‘I keep myself busy’, itself implies that a full life is synonymous with plenitude of action and that, in the absence of sufficient signs of socially recognised and expected activity, life may justifiably be thought to be empty. But empty of what? Empty of certain kinds of activity perhaps, but empty of meaning? Is someone who is paralysed by a stroke or slowed down by age merely existing, but not actively living? Do we discern aliveness primarily by means of the capacity for physical activity undertaken either on one’s own or another’s behalf? Why is our sense of purpose tied to what we do, to the roles we perform: mother, doctor, businessman, activist, teacher? Who are we, stripped of these? We have walked quite a distance from our initial encounter with the hairdresser, but the journey has been necessary, for prejudices against the ill or disabled or aged have equally to do with our ideas about the well and able-bodied, and the one cannot be challenged without the other. The issues posed by illness, disability or aging are finally inseparable from those encountered by individuals whose lives presently seem to be disconnected from these concerns on account of health, ablebodiedness and youth. If, as we have seen, some of this prejudice relates to the kinds of doing we value or devalue, each of us may do well to contemplate how we currently assess and value our life and our labour. What is included and what excluded in our estimation of what we consider significant about our lives? Such an exercise may serve to liberate us in the present, even as it prepares us to meet our futures and those of others with greater wisdom and genuine compassion. This article first appeared in The Hindu (September 16, 2001). Reproduced with permission.Lata Mani is author of Interleaves: Ruminations on Illness and Spiritual Life.
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