|by Dennis Nyakundi Onguti|
|Published on: Apr 13, 2007|
|I had been following our contributions to the HIV/AIDS issue and reading through the various members' response to the issue. But of most important is the remark that Mr. Howard made in Australia which has fueled a lot of fury. As i read all the comments made, i felt the root of all this is stigma and the related perceptions and i dedicate this article to bring much more awareness on the issue of HIV related stigma.
Since the war against HIV/AIDS began as a problem in society, so much has been done in the medical field to find the way of combating it with national and international organizations being in the front line funding for medical provisions and running awareness programmes while NGOs and CBOs have grown so fast to meet the needs created out of HIV/AIDS and creating awareness. Every country has come with slogans to campaign against its spread. The “outsiders” have done their best to care for their brothers and sisters suffering. Only it has turned out that in spite of the efforts being made, there is one area which has been neglected and is doing a lot of disservice to all these efforts. This dimension is STIGMA. We cannot turn out the significance of these words: “You talk and I die.” It has been realized that “most persons infected with HIV/AIDS more often die from factors associated with stigmatization rather than from the physical effects of the scourge.”
Stigma in general is defined as a negative label that disgraces, shames someone/group not because their behavior is abnormal but due to the fact that the person/group has certain attributes that leads others to perceive him/her as different from them. But the HIV/AIDS related stigma in particular refers to a pattern of prejudice, discounting, discrediting and discrimination directed at people perceived to have HIV/AIDS, their significant others and close associates, and their social groups and communities. Therefore stigma is a mark of shame or discredit directed to a person because of his/her HIV status. These reactions leave us wondering what is so strange to HIV/AIDS that those infected and their close associate are labelled and discredited this way!
Stigma being such a deadly phenomenon, in this article I seek to address a number of issues raised by stigmatization. I will focus on factors contributing to HIV/AIDS stigma, forms of stigma, its impact especially to society.
FACTORS CONTRIBUTING TO HIV/AIDS RELATED STIGMA
HIV/AIDS in the common understanding of its acquisition is linked with the moral behaviour of the person. In other words, it is a behavioural disease. The HIV infection is associated with sexual behaviour and use of drugs. It affects those considered to be outside the “normal” behaviour of society like the gay, sex workers, drug users, illegal migrants, the poor among others. But also the scary experience of the terminal stages and death of the AIDS victims provide grounds for stigmatization. Some factors that lead to high stigmatization of the people living with HIV/AIDS include:
1. History of the disease.
The discovery of the HIV/AIDS as an incurable disease, it was found among the marginalised groups of society such as the prostitutes, gay, injecting drug users and generally the sexual deviants, the poor and the ignorant. This enabled to create a general stereotype that it is a disease of the social deviants who deserve condemnation and hostility.
2 Moral and religious beliefs.
The idealization of sex within marriage as beautiful and fulfilling tags sex outside marriage as temptation, immorality, sin and evil. Among some religious groups and church goers it is believed that those with the virus had committed immoral acts and put themselves outside the church community. This linkage ostracises those infected as immoral.
3 Fear of contagion.
Due to ignorance or misinformation, some people believe that even casual contacts with PLWHA, one will be infected. This fear makes family members to separate utensils and other facilities, in offices the HIV positive people are sacked while landlords have evacuated them from their premises. Doctors and nurses refuse to treat or admit people living with the virus for fear of exposure to HIV as a result of lack of protective equipments.
The fear of being infected cover not only the physical realm but the fear also extends to the social and moral taint by interacting with the stigmatized individuals.
4 The physical and economic effects of AIDS.
HIV infection is considered unalterable and degenerative. The final stages of AIDS and the wasting of the body create both fear and a certain revulsion among many people. So the sufferers are approached cautiously and even avoided and isolated. This makes them be discriminated in the social services and opportunities given them. The financial burden that lies at the terminal stages of AIDS in taking care of the sufferer is high and it causes a great material straining, that a family may run completely out of resources.
5 The view of HIV/AIDS as a disease of the other.
Sometimes it is extreme hard to imagine that one could be infected or a partner or close person. Most often, the disease is seen as of the other and never me. This attitude linked with the self-righteousness and judgment of others, makes the condemnation of the infected as irresponsible and therefore discriminated. Mostly we hear stories of those infected with the words “I never thought it could be me!” “I never imagined that I could be infected!” or “I thought AIDS was out there for others but not me!”
FORMS OF STIGMA.
a) Legislative Stigma
In some societies, legislation has included compulsory screening and testing for HIV/AIDS status. Those to be screened are categorised as the “risk groups” who place the public health at risk and those found to be HIV-positive their international travelling and migrations are at least limited if not completely barred.
On an extreme, coercive measures such as quarantining of HIV-infected persons, universal mandatory testing, and laws make it a crime for people with HIV/AIDS to have sex and mandatory identification cards are reinforced
Lack of proper legislation's also gives room for stigma and discrimination against people living with the HIV/AIDS (PLWHA, from now on i will be using this abbreviation to mean People Living With HIV/AIDS). In situations where the employers have the absolute right to establish their criteria of employment without any government policies, have openly refused employment opportunities for PLWHA. The following reaction says for the situations of discrimination that the PLWHA have to face in their daily lives.
One day i had a chat with a Human Resource manager of a company and this issue of HIV/AIDS came up and his response says a lot. "Though we don’t have a policy so far, I can say that if at the time of recruitment there is a person with HIV, I will not take him. I will certainly not buy a problem for the company." This shows that for the fight against HIV related stigma to succeed, oppressive legislation's and lack of clear legislation must give way.
b) Denial of social amenities and opportunities.
It is common that PLWHA are denied health and education facilities because of their health status. In some extreme cases, a person may be refused an admission into the hospital but most often, they are admitted but treated discriminate by being denied appropriate food, medicine, or nursing care. In the health care abuses have also been evident in testing a patient without his/her consent and sometimes lack of confidentiality.
Discrimination against children living with HIV in the education institutions is clear. Educational benefits are denied, school administration refuses to admit children infected or parents of other children have withdrawn their own children on realization that an HIV positive child has been admitted into the same school.
Other ways include employers whose industries have health benefits like employee-sponsored insurance schemes providing medical care and pensions for workers have denied employment opportunities or refused to provide this insurance coverage for employees living with HIV/AIDS. It has been seen that some property owners have refused to rent to PLWHA or forcefully evicted them and parents with HIV/AIDS have faced legal battle concerning child custody and visitation rights. While in the religious circles, some groups have denied HIV positive people from getting married. In other places some pastors have refused to accord a Christian burial to the persons who have died of AIDS let alone the spiritual care they deserve.
Violence is experienced by PLWHA or suspected to be infected in different ways. It covers the harassment, both verbal and physical often motivated by the need to blame and punish the victim. They are constantly reminded of their deviant behaviour which may or may not be the cause of the infection. This is common in social groups, churches and even in the street preaching. Sometimes PLWHA have experienced unwarranted demotions, dismissals, harassment in places of work and even killed in the streets as happened in Durban reported in a Kenyan newspaper: "Gugu Dlamini…was waylaid by a mob and beaten senseless. Her crime? Three weeks earlier she had gone public about her HIV-status. She eventually succumbed to her injuries… Gugu died in hospital – her body broken not by the HIV she faced with such conspicuous courage, but the injuries her neighbours inflicted on her."
d) Neglect and desertion.
Government and national authorities may ignore the existence of HIV/AIDS, neglecting to respond to the needs of the infected and the affected while failing to recognize the disease as an epidemic that demands urgent national address. Also it is our experience that HIV/AIDS is recognized at the lip-surface but no commitment to implementations of policies discussed.
On the other hand, PLWHA and their care givers are neglected by denying then food, care love education, drugs, friendship, company and other forms of support like spiritual and pastoral care. This leaves the infected and the affected lonely and hopeless, thus dying miserably without dignity and value.
EFFECTS OF STIGMA
It is argued that stigma is a powerful tool for the social control over some way-ward behaviours in society. In the African society it was common when someone was considered having deviated from the norms of the tribe. The person was discriminated or given a name of discretion.
Stigma instills fear in other individuals influencing them to adapt positive behaviour, for this case to avoid the HIV infection, lest they also get stigmatized. However the effects of HIV/AIDS related stigma has proved seriously destructive. The common saying that AIDS attacks the body and stigma attacks the spirit and both can kill is too hard to underestimate. the effects are to the individual and to society at large. I will start with effects to the individual person living with HIV/AIDS.
1. Psycho-social effects to the individual.
A person socially isolated, neglected or rejected gets a feeling of loneliness, self-hate, regrets, self-blame and bitterness which leads to depression. The state of depression worsens the social relationships with those who visit and the caregivers. At the same time, the infected person loses a feeling of self-love, value and dignity which makes one lose the will to live. This psychological situation accelerates the progression of HIV into AIDS leading to early death or even committing suicide. It is a shared experience that many of the surviving PLWHA have either attempted or contemplated suicide due to the fact of stigmatization. It also follows that some of those who have lost the will to live, decide not to seek medical treatment when required or stop the dosage prescribed.
Similarly those who are denied the legal and social amenities and opportunities, experience the same feelings and may end up in the same way.
Families too have disintegrated due to stigma. Spouses have deserted their partners, people neglected by their relatives, friends or family have created a big gap with those living with HIV/AIDS. We hear some people who tell their story with swearing that they have nothing to do with their blood families because of the stigma they have received from this circle.
2. Effects to Society.
Fear of discrimination from stigma often prevents people from seeking treatment for AIDS or from admitting their status publicly. This situation affects the prevention, control and care strategies/mechanisms and this risks the society at large.
Stigma deters people at risk from being tested and seeking information and the assistance for risk reduction. So, people go on with their life which perpetuates more infections and faster progression of HIV to AIDS.
A far reaching fear not testing is that people who do not know their HIV-status cannot adopt appropriate behaviour change. It sometimes turn out that people who have lived a promiscuous life assume they are already infected which may not be the case and they go on with the behaviour putting them at a greater risk.
Stigma hampers care-seeking behaviour. Self-isolation, discrimination, or fear of coming out publicly inhibits information sharing among partners and potential caregivers. It promotes denial and rejects openness thus contributing to further spread of the virus.
In society stigma creates an attitude of condemnation of the infected and the caregivers. This turns diagnosis into accusation which is shameful to the PLWHA and their immediate family. It forces families to hide their patients from the public or do not reveal the true sickness of the sufferer. The accusations received create a notion that it is a form of punishment from God consequently making the sufferers sometimes to turn against God and refuse any spiritual care.
At an extreme, the stigmatized person may deliberately start spreading the virus. She/he may feel bitter with the society at large and decide to spread the virus to many people as possible.
3 Economic effects
The stigmatized person who otherwise would have lead a normal life and being productive, are discriminated from job opportunities of health facilities making them economic dependants of facilitate their death. This makes the society to lose the productive persons. As the reports say, the infected are greatly the productive age. Worse if the stigmatized person is the sole bread-winner, the whole family is turned into absolute poverty.
Early deaths of parents due to stigma leave behind orphans for the society to take care. In the third world countries, these orphans turn into the streets or become the abused members of society.
Fear of coming out publicly which hampers the sharing of prevention, control and care-giving strategies strain the individuals economic status since they are to rely absolutely on themselves. Moreover, the campaign funds used could have been directed into more urgent needs of the PLWHA.
4 Religious effects.
The notion that AIDS is a punishment from God jeopardizes the understanding of God as a loving and merciful Father who never avenges on his people. At the same time the PLWHA, their family members, relatives and friends may turn indifferent to religious issues due to a wrong perception of God and also refuse any spiritual care.
The effects of stigma are far reaching. Here we have only shared a drop in an ocean.