HIV-AIDS: Understanding the Power of Stigma

Issue 22, August 2007

Morality that is based on "abstract" notions of the good is inadequate. We are particular persons in a particular time with particular relationships. Our history, our story, our culture, shapes how we see God, how we see others, and how we see ourselves. All these factors shape our moral vision just as they also shaped the Sacred Scriptures which were themselves born of a particular time and place and cultural perspective.

Throughout human history, how people see themselves and others has often been distorted by stigmatization. How we see God (and hence ourselves and others) can also be a source of stigmatization. This persistent facet of the human story has led to countless injustices and wars. We have not eradicated it from the human psyche, and it has many expressions in our world today.

Despite being difficult to define, stigma "implies the branding or labeling of a person or a group of persons as being unworthy of inclusion in human community... We may stigmatize those we regard as impure, unclean or dangerous, those who are different from ourselves or live in different ways, or those who are simply strangers. In the process we construct damaging stereotypes and perpetuate injustice and discrimination. Stigma often involves a conscious or unconscious exercise of power over the vulnerable and marginalized." [1]

There are many instruments in society designed to counteract stigmatization, including human rights legislation and agreements at national and global levels. Stigmatization arises from such a depth in the human psyche that these instruments are often limited in their effectiveness, although they do have the capacity over a long period of time to shape society's mores. As Catholics we have resources which, if used well, provide us with the ability to respond to stigma pastorally in ways which can shape both individual and societal responses at a deeper level. In dealing with stigmatization our traditional fonts of moral and pastoral wisdom - the lesson of history, Sacred Scripture and the richness of our theological traditions – have much to teach us.

The lesson of history provides many examples of stigmatization and its consequences, but probably one of the most powerful examples of our time has been the stigmatization of people with HIV and AIDS.

The Lesson of History - HIV and AIDS

HIV-AIDS is filled with historical meaning and has been variously described as a plague, pandemic and epidemic. Many forms of social response to this disease mirror the response of biblical communities to leprosy. Just as lepers were judged to be a moral and physical threat to their communities so those living with HIV-AIDS have been subject to isolation, blame and prejudice.

Wherever it has occurred, and despite different groups in society being affected by HIV-AIDS, this disease represents an ideal projection for fear and has become a marker of social vulnerability. HIV-AIDS demonstrates the way in which disease necessarily reflects and lays bare every aspect of the culture in which it occurs. That is why our knowledge and understanding of it is never free of our social and cultural context and why the meaning of HIV-AIDS is very much culturally and biologically specific.

To define HIV-AIDS as merely a biological fact or a disease associated with a particular group or culture limits our understanding of the disease and, therefore, our theological and pastoral response to it. Sociologists stress that humanity traditionally responds to disease in a variety of ways. Denial is frequently the first response and is often accompanied by punishment of the victim. Once a disease epidemic is recognised, the portioning of blame soon follows. In the nineteenth century cholera victims in the United States and British Isles were in large part the poor and immigrant: "The poor, ill-fed, and unhealthy part of the population, and especially those who have been addicted to the drinking of spirituous liquors, and indulgence in irregular habits, have been the greatest sufferers of the disease." [2]

That the poor should be blamed for the disease was not surprising as cholera spread most rapidly in the squalid and crowded parts of big towns. The placing of blame can also occur at an individual as well as a national level. In the 1918 influenza epidemic, for example, the French referred to it as "The Plague of the Spanish Lady" while the English referred to it as "The French Disease". From a sociological perspective, plagues and disease, especially those that are sexually transmitted, have invariably been regarded as punishments for individual and group behaviour. Central in punitive notions is the distinction of "us" and "them"; "transgressor" and "transgressed". Such themes have great power to isolate the sufferer in the interests of group solidarity.

Placing blame on individuals, or at a national level, is also a way of re-establishing the status quo. Placing blame helps to re-establish a state of certainty, in a time of uncertainty and anxiety. Categories of blame reflect deep social and class biases against racial groups, social groups and specific lifestyles. The poor, the alien and the sinner, have always been convenient scapegoats for the placing of blame in a time of disease and catastrophe. At its heart, blame and prejudice are reflections of worldviews, social stereotypes, and political biases that prevail at a particular time.

Sociologists argue that these traditional responses to disease epidemics have persisted in one form or another throughout the twentieth century and have had a profound effect on society's response to the AIDS epidemic. These social responses to disease give further insight into the theological and pastoral challenges before us as the Body of Christ. Simply put, the challenge before the Church is to recognise how and why people respond to a threat like an epidemic with stigmatization and blame, and to recognise that this is the place where the Church must start its theological and pastoral reflection. These insights must be placed within a gospel context if we are to understand the full implications for those who suffer and for the wider society in which they live.

Sacred Scripture and Theology – the Good Samaritan and Healing of the Leper

The Second Vatican Council [1962-1965] beautifully describes Sacred Scripture as the "soul of theology." Sacred Scripture shapes theological reflection and informs our particular response to the pastoral needs and challenges that we face as members of the Body of Christ who are called to live the gospel responses of justice, compassion and service.

The ministry of Jesus is highly instructive in how the Body of Christ is to respond to the stigmatized: "Jesus mixed with them, included them, invited them into his circle of friends, touched them and, in turn, allowed himself to be touched by them. In the end Jesus submitted himself to the ultimate stigmatization of public crucifixion outside the city walls." [3]

As noted earlier the Scriptures themselves were written in particular contexts, at different times and consequently reflect the social locations of the authors. The use of Scripture to support stigma is a refusal to acknowledge this fact. Equally, such use of Scripture fails to acknowledge our own social context and the cultural traditions that have shaped our views.

In the parable of the Good Samaritan, for example, Jesus challenges the lawyer to revisit the law and religious traditions of his people in a spirit of compassion so that he can once more become a neighbour to the man in need. Despite the natural antipathy between the two men, the Samaritan puts aside any learned antagonism and responds to the deeper and innate call to compassion. His sympathy is not fleeting or ineffective but real and profound.

That is why Jesus clearly shows the lawyer that the question is not, "And who is my neighbour?" but rather, "How might I be a neighbour to the person in need?"

The cure of the leper by Jesus - Mark 1:40-45 - provides us with further insight into the care of those living with HIV-AIDS not least because of the context for this healing. Simon and his companions search for Jesus and find him at prayer. Jesus shows an inner alertness and awareness of his mission, and is able to maintain this awareness despite the clamouring of the crowd. He is also encouraging his disciples to see a bigger picture – his acts of healing are primarily a way of preparing the ground for the approaching kingdom of God. Those who live on the boundaries of the kingdom are, in fact, the ones who will become central to the flourishing of the kingdom because they will reveal the true power of God's reign. Those who are deprived of a presence in the worshipping community will reveal the true light of the gospel and lead others to rediscover the link between true worship and compassion. The treatment and care of those on the boundaries becomes the pivotal way the Body of Christ influences the wider culture for the good. In a very real sense, acts of healing and acts of compassion, in turn, heal and enhance the wider culture. In reaching out to the leper, Jesus is making a very clear statement about the wider culture's need for healing and inclusiveness.

The downtrodden and ostracized, such as the lepers, highlight the surpassing nature of the salvation that is now accessible to all no matter what their social status. Lepers were a despised and stigmatized class of people. As well as bearing a very disfiguring disease, lepers were also considered to be ritually unclean and, therefore, were segregated from the community and from its religious worship. Furthermore, the healing of the leper was considered by many in the community to be as difficult as the raising of the dead. That is why they also viewed the cleansing of leprosy as an expected sign of the Messiah's arrival.

The leper displays great courage. Not only does he appear in the crowd but he also begs Jesus to cure him. One senses the emotional urgency in his voice and in his actions as he kneels and cries out to Jesus, "If you want to, you can cure me!" Scripture commentators tell us that the phrase, "moved with pity", or "feeling sorry for him" is more correctly translated as, "moved with anger." In other words, the response of Jesus is immediate and one that acknowledges the man's urgent need for healing and for welcome back into the community. In commanding him to "show himself to the priest" and to "make the offering for healing prescribed in the Law of Moses", Jesus is inviting the man to bear witness to the fact that there is now a power capable of bringing healing to the individual and to the community. That power is Jesus.

Jesus has intense compassion for the outcast and for those outside of respectable society. Nevertheless his compassion is not without price and neither will it be for we who form the Body of Christ in this time and place. The dynamic in the healing of the leper is very significant. Jesus comes from prayerful solitude and answers the call of the leper who has no name save that of "leper". He lives in a wilderness and in isolation from community. Jesus answers his heartfelt plea and the leper is once again called a man. His humanity is restored and he is freed to hear the good news of salvation from the security given by the welcome of the community. Jesus, on the other hand, places himself apart from the crowd by his compassion. He withdraws after the healing and because of the healing. This reveals a certain loneliness in healing and a certain "price" in ministry. Jesus treads the path of the "obedient servant of God" – a path which only acquires its full meaning in the light of his death and resurrection. The need for healing is not always understood or recognised by the crowd who may not even wish to pay the price of healing. Even so, healing is an essential feature and a sign of the presence of God's reign even when it remains humanly incomplete.

A pastoral response to stigmatization

As Christians and Catholics we have a complicated history with regard to stigmatization. We have stigmatized others and been stigmatized ourselves, and the wounds and scars of these processes linger in communities around the world.

Our first response to stigmatization must be personal, for the tendency to stigmatize others can lurk in the heart of the most committed follower of Christ. At the personal level, in our own society, we are constantly at the mercy of the media which can be a powerful agent of stigmatization.

There is a disturbing tendency in some parts of the media towards stigmatization of the poor, who most often transgress society's mores and laws as they struggle to survive. The exclusion of the poor is accentuated by their concentration in particular locations; their stereotyping is often based on ethnicity, and their stigmatization on culture and behaviour. There are influential people in so-called "mainstream" society who ignore, contest, or refuse to acknowledge a history which has led some New Zealanders to poverty and social dysfunction. The story of stigmatization in our society is most often linked to a refusal to respect the tragic stories of others.

People with HIV and AIDS in New Zealand have become almost invisible in recent years. It is not clear whether this is because they are now fully accepted rather than being stigmatized, or whether we have stigmatized them and those who support them into silence and invisibility.

We can only respond adequately to stigmatization when we are aware that for each of us it is our own personal Achilles heel, and that in seeking to relieve the burden of stigma from others we must acknowledge that we have the capacity to impose it on others.

To be stigmatized is to be hurt in multiple ways. First there is the pain or burden of whatever has led to stigmatization, be it an unacceptable illness, transgression or poverty. This pain is compounded by stigmatization and a subtle - or sometimes overt - exclusion. We must kneel beside the stigmatized in their own place; we cannot expect them to walk through the doors of our parish church or local community centre if we do not first break through the icy wall of exclusion and isolation imposed by stigmatization. As with the Good Samaritan, ministering to the pain is only the first step. It must be followed by accompaniment into inclusion if there is to be a milieu in which healing can take place.

We will be overwhelmed by the effects of stigmatization on others and by our own anger if we limit our action to tending to the victims of stigmatization. For the follower of Christ, committed assistance to the stigmatized cannot be separated from action against the forces of stigmatization in society. This action is the most difficult to do and the most often shied away from, because it opens ourselves up to stigmatization and abuse. But in the long term it is the only real way to help our neighbours. If we are to follow Christ, do we have a choice?

References:

Morris, R.J., CHOLERA: 1832, Croom Helm, London, 1976: 16.

Nineham, D.E., The Gospel of Saint Mark, Penguin Books, London, 1963.

Sontag, S., Illness as Metaphor and AIDS and its Metaphors, USA, Picador: 2001.

Swenson, R.M., "Plagues, History and AIDS" in The American Scholar, Vol 57:2. Spring 1988: 16-22.

UNAIDS Workshop: "HIV and AIDS Related Stigma: A Framework for Theological Reflection" Namibia: 2003.

[1] UNAIDS Workshop: "HIV and AIDS Related Stigma: A Framework for Theological Reflection" 2003:2.

[2] Morris, R.J., CHOLERA: 1832, Croom Helm, London, 1976: 16.

[3] UNAIDS Workshop: "HIV and AIDS Related Stigma: A Framework for Theological Reflection" 2003:3.

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Rev Michael McCabe, PhD
Director
The Nathaniel Centre