World Aids Day - HIV/AIDS related stigma and discrimmination

All human beings are created in God’s image and this gives a fundamental dignity to all people. It is vital that church leaders fight against stigma and discrimination within the church and also work for the dignity of all people whether HIV/AIDS infected or not.

Stigma and discrimination are universal occurring in every society in different forms and levels such as; in social/professional interaction, at work place, in the family, in public places, in health institutions etc. Stigma and discrimination is caused by; cultural norms and values, beliefs, fear related to illness and death, lack of understanding and information, prejudice etc.  

Goffman (1963) defines stigma as a significantly discrediting attribute possessed by a person with an undesirable difference. Stigma is a powerful means of social control applied by marginalizing, excluding and exercising power over individuals who display certain traits. It is a common response to perceived threat when escape from, or the destruction of, this threat is impossible. Thus people with power may decide what is normal and what is deviant. But at the same time within this frame, for most people stigma is not merely an attribute, but a representation of a language of relationships. One finds that an attribute that stigmatizes one type of possessor can confirm the usualness of another and therefore is neither ‘discredited’ nor ‘discreditable’ as a thing in itself as it is in many cases in different societies.

Being “discreditable” refers to possessing hidden stigma and not disclosing it. And being “discredited” refers to possessing visible stigma or having disclosed or been found by others to have a heretofore hidden one. People with hidden stigmata, which in most societies include undisclosed criminal records etc are discreditable (Goffman (1990:14).  

There are two main forms of stigma; felt or self stigma and enacted stigma. Felt stigma relates to the feelings that individuals harbour about their condition and the likely reactions of others. These include feelings of shame, self hatred etc.  Enacted stigma refers to experiences of stigmatization/discrimination or sanctions which significant others either individually or collectively apply to people with a condition.   

In terms of HIV/AIDS the stigma and discrimination related to it is not new because in the history of disease or illness, people with cancer, leprosy, etc have experienced stigma and discrimination too. However, what makes HIV/AIDS related stigma and discrimination unique is that just as the virus destroys the immune system of the body, in the same way this stigma and discrimination has been destroying and affecting the social and physical environment of different categories of individuals or groups of people including children. Because of this, stigma and discrimination remains one of the most significant challenges for HIV/AIDS infected and affected people in many communities and institutions. Therefore stigma can be a big obstacle for any development and it creates barriers for the achievement of one’s goals.

Stigma and the church

A lot has been written of how HIV/AIDS infected people and their families have been stigmatized and discriminated by church leaders or religious institutions. This lead many Christians working in the area of HIV/AIDS suggest that it is essential to develop a theology of HIV/AIDS because HIV/AIDS is not just about the virus but it is about people and their relationships. It is also about intimacy, sexuality, vulnerability, pain and suffering, prejudice and bigotry, dying and death. Clearly a theology of HIV/AIDS must be nurtured by a theology of pastoral care recognising that whether we are HIV positive or not, we are all bonded into the mystery of Christ in all God’s people, for whom there is no labels. Spiritual care offers us meaning to what we are becoming and in what we do with our lives for ourselves and for others; how we cope with our own sufferings and spiritual life so that we are freed to be alongside others. Such caring reminds us that we are bonded together in the work of co-healing nurtured through the mystery of our co-woundedness (Snidle and Yeoman, 1997).    

Many HIV/AIDS infected people do not turn to religion or religious institutions only for material help but also to search for meanings in the fate that they experience or will come to experience. Meaning is derived through efforts to understand adversity and human suffering. Perceptions of how one contracted HIV/AIDS and beliefs about its implications provide such a sense of meaning. In searching for meaning, individuals attempt to answer the question ‘Why me’. In terminal illness, meaning is also influenced by many cultural and personal factors. However, when achieved, meaning can bring a discovery of beneficial, self-affirming attitudes towards life in general and a new sense of self-knowledge and positive regard. One way that HIV/AIDS people experience meaning is through conscious efforts to live each day to its fullest. What may have one time seemed a monumental problem may suddenly appear trivial and irrelevant in a new life context of being an HIV/AIDS infected person.

People living with HIV/AIDS commonly experience personal growth as a result of their condition. Learning that one has HIV/AIDS can rise self-awareness, build inner strength and resiliency, and consolidate core beliefs and values. Therefore churches and all other Christian organizations are called upon to represent an accepting and healing community which Jesus preached about. Thus according to our Christian believes and values, all human beings are created in God’s image and this gives a fundamental dignity to all people. It is vital that church leaders fight against stigma and discrimination within the church and also work for the dignity of all people whether HIV/AIDS infected or not.

However, for some infected and affected people, religion may provide little needed comfort. This is because in seeking for religious support, the HIV-infected persons may again have to accept the perspective of the condemners; “that God may be punishing them for their behaviours”. That is rather than promoting tolerance, religion may in fact reinforce stigma and discrimination. The sympathy and forgiveness engendered in religious institutions is not constant, formal, and usually depend on the knowledge a particular clergyperson has about HIV/AIDS. This highlights the fact that while HIV/AIDS has forced many religious groups and leaders to re-examine their theological convictions, and issue public statements that urge conciliation and compassion, many of them are careful not to accept the lifestyles or sexual preferences of most people with HIV/AIDS. The notion that “we love the sinner but hate the sin” still permeates in many churches and still influences many church leaders’ perceptions. 

Just as one may have to search for non-judgemental health care providers, and acceptable treatments and regimens, the infected individual may be forced to “shop” for religious acceptance and support. For some of the infected, affected and/or care-givers, these efforts can provide solace, a sense of belonging, and connection to a larger reality, or they can create new emotional hurts or remind patients of old strictures and messages of guilt and punishment. I suppose that to understand a patient’s religious feelings, may help to inquire about the religious life of the patient in the context of pre-HIV/AIDS life and culture:  is the religious practice new since the patient learned of HIV status, or is it renewed?

It is sad that until now the public discourse about HIV/AIDS includes religiously based statements that HIV/AIDS is a divine ‘punishment’. But one wonders what HIV/AIDS infected children, and faithful spouses did to deserve this ‘punishment?’ Sometimes friends and family members too may use threats of punishment by God to urge conversion to or realignment with family beliefs. This may be the product of a genuine faith, familial guilt and shame, or a fantasy that new religiosity may lead to cure. Moreover, some believe that God has forsaken them.

In one church, I heard a man who lost his wife due to AIDS crying that: Why couldn’t God rescue my wife. He has done it with others. Why couldn’t he do it with my wife too.  This man believed that God could have intervened but he chose not to.

Where there is hope, there is life. Therefore within the above understandings, religion and spirituality can have many roles, none punitive or contributory to self-hate. In the face of illness, religion can be an element in attaining connection and reconnection with God. It can promote homecoming a reconnection to roots, felt profoundly and yet inexpressibly.

It can provide psychic space, within which a person can find opportunities to question and build one’s own belief system. Moreover, spirituality can foster forgiveness and healing. Forgiveness is not meant in a moralistic sense, for being immoral or bad. Rather, religion can help the sick person not to blame God for not rescuing or playing his part. In forgiving life and not blaming God, a sense of blame is laid to rest and one forgives himself or herself as well. Healing incorporates both ‘salvation, ’and ‘physical cure’. Also besides psychological and emotional comfort, material support etc which the infected and care-givers may receive from the religious affiliations, they also find new family members.

Therefore it is important that church leaders and/or religious institutions encourage persons with HIV/AIDS to think in terms of “Living with AIDS” and its challenges, especially of dying into life. Thus, to die living rather than to be dead before they have died. As already stated, as Christians our work is to be alongside the person who is dying into a life that is beyond our comprehension as a listener that affirms as someone who is open to the deepening awareness of the other person’s spiritual growth, through a reconciliation with oneself, others and God.  Therefore the pastor, church elders and/or religious institutions are there according to the HIV positive person’s wishes, as he/she continues with a life’s journey through his/her dying into the mystery of eternal life.