by J. Jayakiran Sebastian

The Rev. Dr. J. Jayakiran Sebastian is a Presbyter of the Church of South India and Associate Professor in the Department of Theology and Ethics at the United Theological College, Bangalore, India. This text originally was delivered at the Regional Workshop/Consultation on HIV/AIDS, February 2001, at the Ecumenical Resource Centre, United Theological College, Bangalore, India. Used by permission of the author.

Introduction

Any decision regarding the nature and necessity of care, especially the attitude towards and the care of AIDS/HIV survivors is not a decision that is made in abstraction, but a decision that impacts on the meaning and understanding of life, not just the life of the individual in question, but also life in a wider communitarian sense. The web of life into which we are bound makes any randomness or arbitrariness in taking decisions regarding care, the question of attitudes and modes of treatment problematic, and has indicated the need for theological and ethical perspectives to play a role in the processes leading up to such a decision. At the same time, the debates on the quality of life, the beginning of life, the cessation of life and the meaning of life have indicated to us that religious and cultural factors have been part of the parameters that either directly or indirectly inform such debates on life, health and sickness, and hence it is imperative that the role such factors play in undergirding our all-too-human responses cannot be underestimated.

The present structures of the medical enterprise in the Indian context, the training systems, the organisation of hospitalisation and the inbuilt structural attitudes regarding medical and nursing care have emerged through a long and complex process, including the interaction between tradition, local practices and the impact of colonization. The so-called “civilizing” attitudes of colonial structures of authority and power resulted in the often crude, but never unproblematic, interaction between the dominant forces and the reservoir of medical skills and techniques available in our own contexts.[2] The institutionalisation of medical care in comparatively recent times, and the setting up of institutions to cater to various levels of perceived medical needs, resulted not only in the emergence of clinics, hospitals and training centres, but also resulted in the institutionalisation of an ideology of care. Generations of medical and support personnel have passed through the training institutions, either missionary-church linked or government or society-group oriented, and have imbibed, along with their training, particular ideologies of care and particular understandings of the meaning and nature of life. It would be of great help if some of the factors that have contributed to such an ideology were placed out in the open, so that we can realize that even the most secular oriented training, which disavows any connection with the Christian theological tradition, or with the colonial structures, have imbibed attitudes towards the body emerging from early Christian understandings of the body, and, whether we know it or not, such attitudes continue to play a role in the debate on the nature and application of care. In the present context, when we have gathered here to be informed and challenged by the reality of HIV/AIDS survivors, such a looking back is necessary so that we can be made aware of all that has been imbibed and which informs our existential present, both directly and indirectly.

In what follows I will be presenting three cases regarding the approach to the body in the early Christian tradition and raise issues that would open us to the wider debate regarding the care and treatment of HIV/AIDS survivors today.

The Body of the Martyr

There is a huge amount of literature preserving the acts and deeds of martyrs in the early centuries. “In the early Church, martyrdoms were exceptionally public events … Christians … were pitched into the cities’ arenas for unarmed combat with gladiators or bulls, leopards and the dreaded bears. … [T]hese displays were financed and chosen by the great men of the cities … . People liked it, and donors courted popularity through this potent psychological form. Violence made excellent viewing, and the crowds could be utterly callous.”[3] For the purpose of our discussion, I would like to highlight one particular episode, that of the martyrdom of a prominent Alexandrian woman, Potamiaena, in the early part of the third century, during the reign of the emperor Severus. We read about the tortures and threats that she had to endure, including the threat to be handed over to the gladiators to be gang-raped.  We read how the crowd tried to insult her and passed vulgar remarks. She was finally burned alive:

she nobly endured the end: boiling pitch was slowly poured drop by drop over different parts of her body, from the toes to the top of her head. Such was the struggle that this magnificent young woman endured.[4]

The key idea for us is the link between the death of the martyr and the reality that she could not be killed unless she herself was willing. The role of the subject in determining her/his destiny has always played an important role down the ages. The informed choice, the open rationality, death as a spectator-event, in which the one who is about to experience this reality is, up to the end, in control of the ultimate decision, are issues and themes that emerge from this episode. What about those for whom such a possibility of participating in the decision making process is no longer possible? Our story has led to the point where we need to ask about the “spectator” nature of the attitude of some towards HIV/AIDS survivors, where very often decisions that are to be made requires that the survivor, about whom these decisions have to be made, remains a silent participant in the processes leading up to decisions regarding care. How have we been sensitive to the involuntary “marking” of the survivor?

The Body of the Ascetic

The extreme turns that the monastic movement took in the early centuries of the development of Christianity will be illustrated with the example of the greatest of the pillar-saints, Simeon the Stylite (c. 389 – 459), who lived perched aloft pillars, including his last abode, a pillar sixty feet high, on the top of which was a small railed platform, where he spent the final forty years of his life.[5] After a long period, undergoing extremities of asceticism and facing vicious temptations, we read:

His foot developed a gangrenous putrescent ulcer, and harsh pain came and went through all his body. And fearful pains of death seized him, but he endured them. For he did not murmur, nor was he hindered from his labor. … when the affliction grew strong and acted mightily on the holy one, his flesh decayed and his foot stood exposed. … And he watched his foot as it rotted and its flesh decayed. And the foot stood bare like a tree beautiful with branches. He saw that there was nothing on it but tendons and bones. … The blessed man did a marvellous deed that has never been done before: he cut off his foot that he would not be hindered from his work. Who would not weep at having his foot cut off at its joint? But he looked on it as something foreign, and he was not even sad.

And as Satan was wallowing in blood and sprinkled with pus and covered in mucus, and the rocks were spattered, the just man nevertheless sang. … While a branch of his body was cut off from its tree, his face was exuding delightful dew and comely glory.[6]

Michel Foucault in his monumental history of sexuality points out that the “Christian ascetic movement of the first centuries presented itself as an extremely strong accentuation of the relations of oneself to oneself, but in the form of a disqualification of the values of private life; and when it took the form of cenobitism, it manifested an explicit rejection of any individualism that might be inherent in the practice of reclusion.”[7]

The episode that we have highlighted has placed in focus an attitude of contempt for the body, a body seen as a vehicle destined for a higher and greater good, a body which is marked by an almost perverse acceptance of the reality of suffering, but also marked by the fact that such suffering is necessary for the purposes of edification: “The body was fashioned anew, and with it, human order as well.”[8] The ethical issue that emerges from the example of the ascetic is the question regarding the responsibility of the care of self and the reality that marks the body as a site where a greater drama is played out. There is the question regarding how such extremes of asceticism were to be seen by those who claimed to be edified, but were not called upon to practice such forms of asceticism in their own lives. Was it in the impossibility of compliance that non-ascetics were to be edified? Edified to do what?

The Body of the Celibate

Sexual renunciation has been and is a dominant theme in the history of the church. In the fourth century, the hermit-scholar Jerome wrote:

How often, when I was living in the desert, in the vast solitude which gives to hermits a savage dwelling place, parched by a burning sun, how often did I fancy myself among the pleasures of Rome! I used to sit alone because I was filled with bitterness. … Now, although in my fear of hell I had consigned myself to this prison, where I had no companions but scorpions and wild beasts, I often found myself among bevies of girls. My face was pale with fasting, but though my limbs were chilled, yet my mind was burning with desire, and the fires of lust kept bubbling up before me when my flesh was as good as dead. Helpless, I cast myself at the feet of Jesus, I watered them with my tears, I wiped them with my hair: and then I subdued my rebellious body with weeks of abstinence.[9]

Here what is important is that the body has not been brought under control by the practice of renunciation, but that it continues to be the abode of the senses in a heightened manner: “The literal pallor and chill of a body ravaged by ascetic fasting was not matched by a cooling of desire; indeed, Jerome’s libidinal imagination was producing dancing girls by the dozen.”[10] A perceptive commentator notes that for Jerome, the body remained “a darkened forest, filled with the roaring of wild beasts, that could only be controlled by rigid codes of diet and by the strict avoidance of occasions for sexual attraction.”[11] This insight has also been the experience of those standing within the great Indian tradition of renunciation, as, for example, Gandhi has so graphically described.[12]

Questions on the nature of care for HIV/AIDS Survivors

Having examined these cases, we now need to raise and problematise the issues, which having emerged in the past, weigh upon the present.

1) The example of the body of the martyr indicates that in the present day context of the consideration of the various aspects of care, even in cases where decisions have to be made without direct reference to the survivor concerned, the presumed rights and consent of the survivor remains a problematic area. With whom does the choice lie? What about those who are in no position to make any kind of informed choice? How do the caregivers interact with the family to whom the survivor belongs? What is the role of economic interests in either prolonging or terminating care? Does the language of cost and benefit belong to such considerations?

2) The example of the body of the ascetic seems far removed from any consideration on the various aspects of care. Nevertheless this example has consequences for the complexities of the present. There is a link between the various aspects of care and the perception of suffering. Does suffering have any meaning? Is there dignity in suffering? Does the ability, or lack of ability, to manage pain and the trauma of rejection play any role in coming to an ethical, moral or medical decision?  It has been pointed out that “despite the obvious ways in which asceticism can appear as a pessimistic movement in its alleged flight from ‘the world,’ there is a certain optimism at its heart. Men and women are not slaves to the habitual, but can cultivate extraordinary forms of human existence.”[13] If this is so, then what do the HIV/AIDS survivors have to teach us, in and through their lives, which manifest this extraordinary form of human existence?

3) The example of the body of the celibate may have functioned to titillate and amuse. The reality remains that the body as a site of feelings, desires and emotions lead us to the consideration of the body as something beyond the mere physical and physiological. Considering those who are perhaps terminally ill, considering those who may not be in a position to gain from the technology of medical care, the attitudes of those who interact with HIV/AIDS survivors raises issues regarding the various ways of understanding the psychosomatic nature of the human body. When confronted with the reality of a person, who even in the extremity of a possible near-death situation is nevertheless a human being, one needs to ask whether decisions regarding care have sufficiently problematised the sentient nature of the human person, and taken into consideration the body as a site of human feelings.

At this point in time, you may be forgiven for thinking that I am obsessed with what would seem to be extreme cases – the martyr, the ascetic and the celibate. You may be forgiven for thinking that these are cases that emerge from the margins. What about ordinary people, what about the life and death of such people who were not called upon to inhabit the boundaries? It is my contention that it has always been the extreme cases that have provided the basis for bringing theological, ethical and moral judgements to bear on the life of the so-called “ordinary people.” Cases on the margin and the intensity of the boundary situation have been the sources from which those who are called upon to make choices draw. Where does all this leave us today, when we have gathered to consider ethical/theological perspectives on care?

I realise that I have been taking refuge in examples from the past, and have not yet made any theological affirmations regarding the care of the survivors today. I hope that I have demonstrated that the contemporary debate would be impoverished if it did not take into account this legacy of the past. One could benefit from a deeper analysis of how the inherited Judaeo-Christian tradition has interacted with the attitudes to the body within the Indian religious traditions in informing the issue in the past and even today.

My position would be that, theologically, however much one may talk about life as a gift from the beyond, which, nevertheless, has to be lived in the here-and-now, any attempt to brush aside a debate on the responsibility of church and society using so-called “moral” categories in a narrow and restrictive sense would be irresponsible. In talking about the care of survivors, one needs to remember that care includes the dimensions of an intervention, informed or uninformed. How was this intervention done? Why and for whom and by whom? Intervention carries along with it structures of support or lack of support, physical and material, human and technological. Certain attitudes to care can easily lead to a withdrawal into helplessness or a descent into fatalism. It is because “death is an ambivalent event, we cannot achieve  … moral certainty in order to feel comfortable in a horribly complex world of fundamental moral risks.”[14] Questions regarding usefulness of a decision and the limitedness of knowing will continue to be part of the process of deciding, a process that is never free from the responsibility of risk, which has to be seen as the risk of faith It is the wider societal group, which comprises of the health care professionals, the ethicists and theologians, the family, and ultimately the more-or less silent survivor, who are at the core of the decision regarding the nature and methodology of care - care medical, care spiritual, care societal, and care emotional.

What does care mean in relation to the body in pain and in terms of human dignity, dignity both in life and in death? The Indian Christian theologian, Stanley J. Samartha, himself suffering great pain because of cancer, poignantly asks: “Are there not moments in human life when dying with dignity is a far better option than dependence on others, humiliating struggles, and silent or audible cries of pain?”[15] Terms such as love, value and life have to be seen not in monochromatic terms, but the polyvalent and ambivalent nature of human reality has to be seen in all its variety. A narrow appeal to a presumed “religious” ground to problematize care, functions only to obscure wider issues regarding the body and society. I hope we have the basis for a challenging and fruitful discussion.