Social workers are concerned with individuals in the society who suffer from disadvantage and social exclusion. This paper takes stigmatization as its central theme, considers its impacts for individuals and the community and those who may experience stigma through association. Evidence from research and practice will be used to explore a wide range of issues particularly concerned with HIV/AIDS. The focus of social work has been on anti-discriminatory practice and this corresponds with the need to provide individuals suffering from HIV/AIDS a safe haven where they can once again feel part of the community.
Initially, HIV/AIDS was not seen as a threat to the general public in United States and Europe owing to its association with stigmatized populations. Therefore, activists solicited political support for curbing the disease as a threat to general public health by proving that anyone could contract the virus and by showing that individuals suffering from the disease were being stigmatized unfairly (Mann 1996). During the initial years of the pandemic, policy and scientific literature on HIV/AIDS were centered on the identification of the agents of the disease and its modes of transmission, and looking for vaccines and cures. Today, the availability of HIV specific medical interventions and the fact that the virus affects an increasing number of world populations has resulted in problems that prevent the implementation of prevention and treatment strategies such as stigmatization to gain increased focus. The problem of stigma associated with HIV/AIDS has thus come to be highlighted in recent initiatives by various organizations.
From time immemorial, stigma has been a characteristic of numerous diseases particularly those that are transmitted sexually or terminal diseases. Currently, this problem is under investigation in various medical conditions that range from anorexia to stuttering, and encompassing sexually transmitted diseases, mental illness, tuberculosis and HIV/AIDS. The management, experience and incidence of medical conditions are today being seriously affected by stigma which quite often exacerbates the pandemic’s biological impact (McGrath 1992). Stigma has been used in the explanation of an array of varying problems. Particularly, it has been identified as a major reason behind the reluctance by many individuals to disclose their conditions, go for voluntary counseling and testing and health care. Stigma has also been recognized as a major cause of non-adherence to treatment (Black and Miles 2002). It has also been employed in explaining discrimination and negative attitude against PLHA (Bollinger 2002).
Disease stigma is a very common phenomenon with a multiplicity of causes and effects. It is also highly variable. Despite the recognition of the complicated nature of the subject and the depth of the factors that the term is used to explain, the available literatures fail to employ a common or coherent theory of disease stigma. The concept itself appear to be endlessly elastic; an idea with a wide scope that cannot maintain its core. According to Prior et al. (2003), stigma “is creaking under the burden of explaining a series of disparate, complex and unrelated process to such a degree that the employment of the term is in danger of obscuring as much as it enlightens.”
The majority of literature and research on HIV/AIDS stigma has been carried out in the United States. This is mainly because it has a wealth of research resources, heavy stigmatization of Haitian immigrants and African Americans as HIV/AIDS carriers and an early epidemic. In recent times, considerable attention is now being focused on HIV/AIDS research in Africa owing to the magnitude of the African epidemic, high levels of stigmatization in the region and the way HIV/AIDS issue has been politicized. However, there are still serious challenges facing the comprehension of HIV/AIDS related stigma because of the relative absence of scientific research on how HIV/AIDS associated stigma is manifested (Lorentzen & Morris 2003: 27).
The problem associated with HIV/AIDS stigma has been addressed in related research such as on hindrances to VCT, adherence, care and treatment; quality of life; and on social reactions to HIV/AIDS. Understanding HIV/AIDS stigma within the social, political, cultural and economic context is important as well as addressing stigma as among the causes of reluctance to test, discrimination and therapeutic non-compliance. However, it is important to clarify what is meant by stigma, its causes, and how it operates so as to highlight how it impacts on the society.
It may be said that a theory of stigma is irrelevant in evaluating its impacts on individuals living with HIV/AIDS. Integrating theory in this study is important in the sense that it enables a comprehensive understanding of stigma and its effects for the aim of coming up with a more integrated approach to anti-stigma interventions. It is more efficient to establish interventions established of careful analysis of the problem than to attempt new approaches that are likely to repeat the same mistakes. The way stigma is defined structures the comprehension of how it functions and the best way it can be addressed. Traditional psychological understanding of stigma implied that it is partly or entirely a problem of individual ignorance (Deacon et al., 2005:234). The implication of this view is that if people are provided with the facts, the silence that characterizes HIV/AIDS can be broken thus reducing ignorance while maximizing tolerance to people living with HIV/AIDS. Educational intervention for the general public is meant to serve this purpose.
However, stigma has not been eliminated by education. A critique of the traditional approach has been developed by some researchers in attempt to provide an explanation about this failure by education to eliminate stigma. According to these researchers, stigma is a complex social process associated with competition for power and integrated into the existing social processes of dominance and exclusion (Link & Phelan 2001; Fassin 2002; Stein 2003). They argue that it is important to explore issues of history, power and broader social functions of stigma. As such, they advocate for a view of stigma as a problem emanating from social inequality.
The importance of these approaches to stigma cannot be denied even though they contain some flaws. There is need to provide explanation for the functions or impacts of stigmatization without making reference to functionalism. There is also need to comprehend the role an individual plays in stigmatization without looking to individualism. The social and individual explanations have to be integrated in order to establish more holistic interventions. As suggested by Campbell (2001:6), there is need to establish an understanding of the complicated dialectic of the society and the individual which structure history, society and culture if they indeed shape health and sexuality. There is also need to comprehend stigmatization process and the particular context within which it takes place and its impacts so as to help in explaining its variable nature. Until this is done, there will not be any hope of developing effective interventions
In racism, there has been a tendency to provide a definition of a concept such that it encompasses an ever widening array of phenomena. Such tendency has been referred to as conceptual inflation. Stigma, like racism, has fallen victim to conceptual inflation due to the fact that much of the literature on research either describes it as a phenomenon that results in discrimination or fail to clearly separate the two concepts. Combining stigma and discrimination is not always seen as a problem since the main concern about stigma is that it may result in unfair discrimination. Again, the tool most employed in the assessment of stigma is a questionnaire that measures self reported beliefs and intended behavior. Many research designs measure what individuals believe (stigma) and what they say they believe and what they do (discrimination) by what they say they will do. In this case, there is indirect measurement of discrimination rather than direct measurement. Questions concerning belief are combined with questions concerning intended behavior so as to establish ‘stigma index’. The assumption in this kind of research is that discrimination and stigmatizing attitudes are measures of the quantity of stigma that can be interchangeable since the common definition of stigma is held to be a phenomenon that leads to discrimination. In this regard, the stigma index is employed in determining the amount of problem caused by stigma in a given society and this is associated with its possible effects.
However, there are three reasons why this approach is problematic. First, what individuals say they do or believe cannot be directly translated into what they do (Joffe 1991). As much as some stigmatizing ideas may directly result in discrimination, there is no direct link between stigmatizing ideas and discriminatory actions. Not all discrimination is a consequence of stigma neither is all stigmatizing ideas results in discrimination. For instance, individuals living with HIV/AIDS may be denied a job owing to gender or racial prejudice and not because of stigma arising from HIV/AIDS. An individual holding stigmatizing beliefs towards people living with HIV/AIDS has very slim chances of acting on these beliefs. Combining stigmatizing ideology and discrimination obscures investigations into other probable causes of discrimination such as race, gender or class discrimination, and probably other channels for interventions against discrimination.
Secondly, the response of stigmatized individuals to stigma has no direct link to any degree of stigma in the general population. For instance, what people living with HIV/AIDS choose to do cannot be forecasted based on the amount of actual stigma or discrimination that they undergo personally. There are other factors that might affect the access and care by people living with HIV/AIDS such as the actions they may take in an attempt to avoid the kind of discrimination that people they know or media report, the particular meaning attached to HIV/AIDS and the level of confidentiality that the healthcare environment provides. It is difficult to accurately and effectively target interventions owing to lack of specific research on the relation between stigmatizing ideology and discrimination and how they affect access to treatment and care.
Consequently, a definition of stigma as something that leads to discrimination is also inadequate in the sense that it encourages a functionalist approach to stigma. The functionalist arguments have limitations because of its tendency to define the effect of something as its causal factor and because of the fact that they cannot be disproved owing to the cyclical nature of the arguments. For instance, if we assume the definition of stigma and discrimination as social processes that are associated with the reproduction of exclusion and inequality, deployed by solid and recognizable social actors seeking to legitimize their own dominant status within the structures of social inequality (Parker & Aggleton 2003: 18-19), it is clear that such a definition while explaining the persistence of stigma is a circular argument in its definition of stigma as something that leads to discrimination. This cyclical nature hinders debate and obscures investigations on the complex way in which stigma operates and how it relates with discrimination.
The Impacts of Stigma on People Living with HIV/AIDS
The impacts of stigmatization on people living with aids can be understood from individual, social and health care perspectives. From an individual perspective, people may be discouraged from taking HIV test, sharing results and complying with treatment because of discrimination, fear of rejection and violence even when they are aware of the advantages of early detection. The sense of shame about the condition may also impact on an individual’s ability to take preventive actions. The stigma associated with HIV/AIDs also impact on the person’s access to work and health services apart from impacting on how they are treated by social, community and religious groups. For instance, in Uganda, the initial conception of AIDS as a terminal condition had a massive influence on resource allocation within the household and the provision of treatment (Goffman 1963:34). The patient’s or family denial of the symptoms was a common phenomenon which made it easier for resources to be diverted. Many HIV infected individuals were prevented from attending health care centers because of fear of stigmatization. In its place, they chose to be visited at home by health workers who visited at night. Among the economic consequences of the perception that AIDS was contagious was the fear to purchase produce from a family in which a member had contracted the virus.
In responding to fear of stigmatization and social isolation, many people living with HIV/AIDS avoid their involvement in community AIDS education even though this involvement offer them immense opportunity for correcting the numerous preconceptions concerning the virus and its mode of transmission (Wright 2000:6-7). There are also very slim chances of people who already belong to stigmatized populations to become involved with HIV prevention programs.
Families share in the effects of the infection and the related stigma. For instance, children whose parents died of the condition may be stigmatized by the community. Individual family members may also be compelled to endure physical and emotional stress that accompany caring for those infected particularly when they develop full blown AIDS (Sealey 1995: 108-119).
There are major psychosocial impacts experienced by AIDS orphans on the loss of parents and this may include stigmatization and difficulties in learning, low levels of social support, social ostracism, economic hardship and discrimination in every realm of life. These children may also be fearful of losing other individuals close to them. Other experiences include extreme loneliness, desolation, heightened levels of concealment as to the cause of parental death and unresolved grief (Devine & Graham 1999).
Stigma is long known to have negative impacts particularly among those individuals who have life changing and devastating illnesses. In particular, the phenomenon is characteristic of people with HIV/AIDS illness. Apart from being subjected to life-altering changes in their daily activities, people living with HIV/AIDS also have to contend with the painful actions of others who often hold that these people should be further discriminated for their stereotypical deviant behavior. There are various forms of discrimination and stigma faced by people living with HIV/AIDS. These further result in the reduction of the overall quality of life and well-being.
The probable effect of stigma has been a major concern in addressing issues of HIV/AIDS. Stigma itself has been central to the worldwide AIDS challenge as the disease itself. Stigma at individual, community and societal level has had major implications for HIV/AIDS. Stigma is a common phenomenon when societies are faced with problems that appear to be beyond their control such as the HIV epidemic. When seen from the perspective of those individuals who feel discriminated, the direct consequences of stigma are terrible. In this paper, I will argue that the effects of stigma further impacts on the multiple dimensions of the lives of individuals living with HIV/AIDS, and on a broader perspective, it affects the lives of the members of the society thereby creating disruptions in social functioning, increasing the vulnerability of individuals to infections and minimizing the overall caring capacity of communities. Stigma is a pervasive problem that impacts on global health while at the same time posing a major threat to one’s psychological and emotional wellbeing. Discrimination comprises of actions within which the context of stigma is applied whether at the societal level or individual level. the concept of stigma comprises of four components which are disparity in distinguishing and labeling, linking human differences with negative attributes, loss of status, and separating people in terms of ‘us’ and ‘them’. Stigma is also dependent on political, social and economic power since the introduction of stigmatization requires power. The stigmatized individual is often sapped of power which facilitates differences and minimizes the stigmatized individual or group’s self worth and social status (Link & Phelan, 2002).
The history of stigma and discrimination is nothing but shameful. The main role played by stigma in the establishment of difference and social hierarchy. It then legitimizes and perpetuates this social inequality (Parker et al. 2001). Discrimination on the other hand emanates from the point of disparity which can be consistently labeled. Such includes physical deformity, illness, racial differences or any other factor that makes an individual different to the perceived norm. Norm in this regard is defined with respect to power. Race, gender, religion, sexual orientation among other things has been the focus for discrimination. Discrimination has long been attached to illnesses. It has impacted on individuals with physical illnesses and mental disorder. Intervention has especially been difficult due to the complex nature of stigma and discrimination.
Stigma and discrimination are negative social processes that provide a feeling of protection to the powerful while maximizing the load on people who are victimized in the process. Stigma may be conceived of as a tool that more powerful groups employ as a protective mechanism. Its construction is such that it only affects those individuals to which it is directed and conceived to be at blame hence the justification of them being discriminated (Douglas 1995).
There are distinct characteristics possessed by stigma related with HIV/AIDS. HIV/AIDS related stigma is further heightened by the fact that it is layered with other kinds of stigma associated with drug use, homosexuality, gender, promiscuity, race, among others (Lee, Kochman & Sikkmema 2002:310). Communities that are viewed to be more affected by HIV/AIDS are often at the receiving end of discrimination. In this regard, stigma not only impact on the person who has been infected by the virus but also maximizes exclusion of those populations associated with that are already stigmatized. The initial years of the AIDS epidemic in the United States resulted in the fear of the gay community being isolated owing to the fact that the epidemic was large associated with the gay community. There were various attempts to dismiss the epidemic as a gay only disease and therefore there was no need for far reaching intervention.
There is danger of multiple stigmatizations in the case of AIDS. A person can fall victim to various forms of stigma and hence feel multiple burdens (Gilmore & Somerville, 1994). For instance, a physically handicapped HIV-positive woman would feel stigma in every dimension of difference with every kind of stigma isolating her from the various sectors of the community. In this regard, work based on combating HIV-related stigma need to interact with other stigmas that individuals experience (Brown 2004:65).
The establishment of discrimination on both HIV-positive and HIV-negative individuals have been associated with anger and fear (Kok, Kolker, de Vroome & Dijker, 1998). The development of stigma in HIV/AIDS has also been strongly linked with morality (Das, 2002; Golden, 1994). There has also been sharp distinction between those individuals who contracted HIV through organ or blood transfusion, women whose partners are not faithful and children of women with HIV; and people who are seen to be guilty and therefore deserve the disease (Schellenberg, Keil & Bem, 1995). Discrimination may also emanate from religious sector by making explicit and implicit judgments against people infected with HIV/AIDS (Paterson, 1996). There are documentations of attempts to label HIV/AIDS as punishment of sinners by God (Crawford, Allison, Robinson, Hughes & Samaryk, 1992).
The tendency to bale others is often reassuring psychologically since it separates the society into ‘us’ and ‘them’. ‘Others’ are rendered guilty because of their unacceptable behavior. They are guilty of adopting modes of behavior that not only resulted in them being infected but also infecting other innocent individuals. This aspect maximizes the load of stigma carried by the population seen as responsible (Crewe, 1992). The link between HIV stigmas with gender discrimination has resulted in women being blamed for the spread of the disease. It is often expected that women should offer sexual services to men, be chaste and pure, and above all take the responsibility of not contracting disease and becoming pregnant (Leclerc-Madlala, 2002). The way of relating to someone who has contracted the disease also results in further difficulty.
There are numerous instances of discrimination introduced by various governments and these include policies that restrict admissions, deportation of foreigners, compulsory testing for those individuals seeking work permits and restricting individuals with HIV/AIDS to particular places.
A major effect of stigma and discrimination is that it conceals the magnitude of the epidemic thereby compelling individuals who have contracted HIV and any condition associated with it into hiding. It becomes difficult to acknowledge HIV/AIDS. Again, any relationship with the disease or individuals with HIV/AIDS can be a reason for that particular individual to be excluded from their community. The result is that the disease becomes concealed with the perceived threat being minimized. This also makes the disease to be someone else’s problem. The beliefs about stigma then start to facilitate the use of denial and distancing by individuals and communities as a defensive mechanism against the disease with the result that the need to adapt reduces (Skinner, 2001). Establishing barriers between infected individuals and the rest of the community consumes much energy which can be used profitably and steals the intervention of some of the most critical advocates for behavior change-those directly affected.
The result is that the epidemic disappears creating the chance for scapegoats concerning the individuals or groups associated with the condition. The scapegoat process may be dangerous as it pints the blame on a small percentage of the population while leaving the rest with a false conception that they are safe (Douglas, 1995). A major problem results when individuals who possess the power to construct interventions further use discrimination as a basis for failing to implement such interventions.
Discrimination has serious consequences on diagnosis and treatment. It may imply delay in treatment for the individual and hence delay in the adoption of a healthy lifestyle. It creates a situation in which the individual lacks the motivation to be tested as he/she fails to see the benefits since being diagnosed with HIV/AIDS is equated with death apart from signing a warrant for discrimination. In particular contexts, people have been shown to be fear stigma associated with HIV/AIDS more than the disease itself (Lie & Biswalo 1994). Even for those individuals who know their status, discrimination may hinder their access to treatment. Many infected people are unlikely to acknowledge this fact to their families.
Stigma affects people living with HIV/AIDS themselves owing to the internalization of the stigma into their self-identity and self perception thereby affecting one’s perceptions and interactions. Research indicate that people living with HIV/AIDS feel a sense of isolation, guilt and shame which is normally integrated into identity (Kalichman, 2004). Therefore, stigmatization limits the general participation in life activities. The rejection experienced by people living with the disease affect their sense of self resulting in a feeling of compromise and blame for their condition. The way people living with HIV/AIDS see themselves and how they interact is influenced by internalization of stigma. This further affects the way the person copes with the condition.
Stigma has serious impact across various outcomes including self perception, motivation, group identification, social interaction, self-esteem, task performance and well-being. Individuals belonging to a stigmatized group are in most cases devalued, excluded or ignored. They may find it difficult to create a clear and accurate self concept particularly when it comes to realms that are relevant to stereotypes concerning the group. Because of their interaction with other individuals who are seen to hold negative stereotypes concerning the group, belong who belong to stigmatized groups may see themselves in ways that correspond with these stereotypes in an attempt to be socially accepted and maintain relations with them. General anxiety is maximized by constant negative experiences with stigmatization. Individuals who belong to stigmatized groups are also affected by their own experiences. The behavior of the members of such groups may also mirror negatively on them resulting in shame when seen as a confirmation of the negative stereotypes placed on their groups.
Research on the impacts of stigma has indicated wide and persistent impacts across an array of affective, behavioral and cognitive outcomes. Present work on stigma suggests that that there is much variation in responses across people, within people across time, and across situations. The available literatures also suggest that people who are stigmatized actively cope with the negative consequences of stigma.
Individual characteristics also influence how stigma affects an individual. The process of coping starts with appraising the threat and availability of coping responses. Characteristics of the stigmatized person in this process may impact on what is seen as threatening.
Stigma, Disability and HIV/AIDS
About 10 percent of the world’s population has some form of disability (Mont 2007). The link between HIV/AIDS and disability has not been accorded much attention even though individuals with disabilities are identified as among the major populations at a greater risk of being exposed to HIV/AIDS. Impairments may also be developed by people living with HIV/AIDS with the progression of the disease and may be therefore be considered have disability especially when economic, social and political hindrances limit their complete and effective participation in the community on an equal basis with other individuals.
The important social-psychological effects of HIV/AIDS and any other form of disability lies in how visual recognizable it is, the extent to which attention is drawn by the visibility, the perceived circumstances of the onset of the disability and the effort devoted by the victim in overcoming this condition (Heatherton, Kleck, Hebl & Hull, 2003:87). HIV/AIDS is known to result in some form of physical disability especially when it has developed into full blown AIDS. Owing to the fact that HIV incapacitates the immune system, the victim becomes vulnerable to numerous diseases which my disable him physically. Given the present state of empirical research on physical disability, very little is known concerning the moderating factors than we would have preferred to know and the magnitude of the knowledge we possess at the moment is limited to individuals who use wheelchairs.
There is need to discuss the non-equitable and dysfunctional interaction consequences that have been seen in physically disabled people. There is also need to discuss societal constraints that impact on the life outcomes of physically disadvantaged but are in most cases seen as irrelevant by individuals within the society who are not suffering from those physical limitations. The particular aspects that are associated with physical disability to a large extent influence social outcomes. For example, individuals whose stigmas are visible may be more affected negatively in both social interactions and in societal-level functioning as compared to those having invisible or non-obvious stigmas (Heatherton et al., 2003:102).
There is enough evidence from extensive empirical research which suggest that people with physical disabilities experience problematic social interactions on various realms (Heatherton et al). First person accounts indicate that individuals without any recognizable disability often muse at those who have physical disabilities (Goffman, 1963:21). A behavior that is especially disturbing to those with disabilities is the tendency of other individuals to want to assist them in numerous circumstances without being asked. This tendency is insulting but for people with full blown AIDS, this tendency is unlikely. This is mainly because of the stigma associated with the condition. However, this does not imply that people with HIV/AIDS experience any more satisfactory social interaction. If anything, their experience of social interactions is far much worse than those who are physically disabled for anything but HIV/AIDS.
However, there is an obvious limit to casual observation and first person accounts as methods for assessing the nature of social lives of individuals who are physically disadvantaged and stigmatized persons in general. Even though these accounts provide much information on how such individuals understand their interactions, the transactional nature of the processes of stigmatization is neglected. A complete comprehension of the nature of these processes may be greatly enhanced through a careful assessment of what transpires when stigmatized individuals interact with non-stigmatized individuals.
Studies conducted on such interactions suggest consistent evidence of non-equitable or dysfunctional outcomes. In earlier studies conducted on social interaction involving people with disabilities, Kleck et al. (1966) observed the behavior of people interviewing a confederate who either used or did not use a wheelchair. The results suggested that the participants were more aroused physiologically during the interaction, took more time in making a decision on what interview questions to ask, took a very short time to terminate the interview, and exhibited more behavioral inhibitions during interaction with physically disabled and non-disabled individuals (Kleck et al. 1966:200). Apart from this, the participants exuded a tendency of distorting their personal opinions to correspond with the opinions that are thought to be held by other people if that person was physically disabled rather than non-disabled. There is a clear indication of differential treatment in this study. However, interaction between individuals with HIV/AIDS and those who do not have adopts a dimension that suggests this non-equitable outcome even though at extreme levels since they are in most cases negative and evasive.
Similar studies also suggest this non-equal and avoidant behavior towards people with physical disabilities. Among the observations made among people without disabilities were minimized motoric behavior, minimized gestural behavior, and increased speaking distance when interacting with physically individuals. The majority of these responses are also observable in the interaction between individuals living with HIV/AIDS and those not suffering from the disease. People who do not suffer from the disease are also very protective of those close to them during such interactions. The most important findings in the above mentioned research are that non-disabled people may avoid interacting with physically disabled people if their motives are not detected.
Where such mixed interactions cannot be avoided, there could be serious communication difficulty. Individuals with physical disability are in most cases addressed in a simple language that is more appropriate to interacting with children. Additionally, people with disabilities are assessed more strictly for poor task performance (Ross & Levine, 2002: 97). They also receive verbal feedbacks that are anything but accurate. In various instances, people with physical disability are often accorded personality impressions that are excessively positive.
In many respects, any form of disability is a function of the environment as much as it is a function of the ability of those who inhabit it. Looked at from a social-psychological perspective, one’s self awareness of the disability and his/her sense of incompetence is exacerbated by an environment that is not easily accessible, or that demands unrealistic amounts of thought, energy and preparation. However, there is limited analysis of how the stigmatizing impact of physical disability is influenced by simple architectural barriers. At the lowest level, the pursuance of more active social life by physically disadvantaged individuals is seriously inhibited by architectural barriers. These hindrances may enhance psychological dynamics in such people to levels that maximize concentration on their limitations rather than their competencies.
The results of interaction and environment al constraints are not always constant across all forms of physical disabilities and contexts. For instance, a man who has acquired HIV/AIDS through blood transfusion may experience very different psychological situation as compared to a woman who has contracted the condition via sexual transmission. The two instances are different in a variety of dimensions even though this paper focuses on those that appear to be influential in determining that day to day interaction results and social lives of people living with HIV/AIDS and those with physical disabilities.
As such, the paper is concerned with the question of whether the stigma that is immediately visible has long been identified as critical in determining the results associated with a specific mark. Goffman (1963) differentiated stigmatized people into individuals with discrediting stigmas and those with discreditable stigmas. Under discreditable conditions with regard to HIV/AIDS blotches on the skin, excessive thinness or any other physical deformity. These are the most difficult to manage stigmas since those who suffer from them live in some form of glass houses. In other words, they are easily noticed. Discreditable stigmas are on the other hand difficult to manage for rather different reasons. It is normally upon the sufferer to decide when, how and to whom they are going to disclose the information about their stigma. There is always the risk of rejection whenever the time arrives for disclosure the victims are subject to withholding the stigma and act as if they do not exist. Various conditions fall within this category including homosexuality and HIV/AIDS.
The importance of visibility-invisibility aspect in the prediction of the consequences of interaction, self esteem, and overall social functioning has been noted by several researchers. The results of studies that have acknowledged the importance of these aspects suggest that disabled people whose stigmas are hidden or invisible have less problematic social interactions than those with visible stigma.
Another important aspect of stigma regards whether the disability is seen as controllable or uncontrollable (Heatherton et al., 2003:128). Research suggests that physical disability is mainly conceived to be uncontrollable (Carael et al., 2000:45). This view has led to non-stigmatized individuals to look at the bearers of such stigma with positivity, empathy and sympathy. However, this contrasts with stigmas that are seen to be controllable. Controllable stigmas are always met with hostility and negativity and it is within their category that HIV/AIDS fall. When physical disability can be attributed to factors that are outside one’s control, the individual may be accorded positive personality attributes, affects and skills than when it seen as a consequence of one’s actions (Heatherton et al., 2003:130). These findings correspond with those found in AIDS research. As mentioned, individuals who contract HIV/AIDS through sexually promiscuous and controllable behavior receive negative reaction as compared to those who contracted the disease through less controllable circumstances.
The controllability aspect is strongly associated with social theories of entitlement that individuals establish around stigma. Max Weber’s work on Protestant work ethic supports the view that people get what they really deserve and deserve what they get (Weber, 1904-1905). If a disabled or HIV positive individual is seen to have brought the condition on himself, it is very easy to attribute the condition to something that he deserved. There is always mixed reactions when the person is seen not to be responsible for the condition even though people will continue to attach some element of blame on the sick or disabled individual.
The degree to which sickness or disability impairs mobility is also another important feature that needs to be taken into consideration. The ease at which an individual can move around not only has physical consequences but also social and psychological consequences. A person with severe mobility limitations is always faced with various challenges including stares which constantly remind the individual of the stigma.
Stigmatized individuals as well as those not stigmatized seem to set expectations on the roles they play in interactions. These expectations however vary across two expectations: those who are not stigmatized concentrate don redefining or defining their sense of identities while stigmatized individuals undergo changes of personhood (Mo Kexteya, 2004:8). This is particularly true when the person has not had the condition for his entire life. When an individual becomes a member so a group that he/she had previously feared or pitied, he/she cannot avoid turning those feelings on himself or herself. The difficulty may lie in the fact that the social and psychological adjustments that are suddenly placed on the individual demand that he/she establishes strong coping skills. However, individuals with HIV/AIDS or any form of disability experience a range of strong emotions initially. Nevertheless, people are adaptive and can manage every kind of discomfort and difficulties. When people living with HIV/AIDS or physical disability ignore to focus on their disability and the resultant image problems, they may end up living a less restricted and narrowed life. There are possibilities of adjustment and various benefits can be derived from having such conditions such as awareness, compassion, self-assuredness and increased meaning in life (Sabatier, 1988:4-8).
For individuals without such conditions, their view may elicit stereotypes and stigma schemas. Such kinds of cognitive heuristics may be especially likely when there is no sufficient information about the person with the condition as compared to when much is known.
HIV/AIDS epidemic has been accompanied by stigma from its very beginning. The actual experience with stigma and discrimination and fear that characterize it minimize a person’s willingness to practice intervention, disclose his/her status, seek testing request for care and begin treatment. As the effort to address stigma and discrimination increase, so is the need for setting standard tested and validated stigma and discrimination indicators. However, there are limited measures that can describe and evaluate the existing environment.
Despite these inadequacies in measures for describing and evaluating the existing environment, there is a wide recognition that stigma and discrimination has negative consequences especially for those populations that are already isolated socially or have unequal status in society. These populations normally experience stigma founded on various markers referred to as multi-layered stigma. This paper has attempted to exhaustively look at the issue of stigma and discrimination and how it affects people living with HIV/AIDS especially with regard to physical disability. The paper has highlighted that the effects of stigma emanate from the fear of these effects which bar individuals from looking for information related with HIV/AIDS, getting tested and adopting preventive behavior.
Black, B. & Miles, M., 2002. Making Minorities: Cultural Space, stigma Transformation Frames and the Categorical Status of Deaf, Gay, and White Supremacist Activities in the late Twentieth Century America. Sociological Forum 17 (4):553-591
Bollinger, L., 2002. Stigma: Literature Review of General and HIV-Related Stigma. Draft Policy project report, Washington.
Brown, B. M. 2004. Measuring HIV/AIDS Stigma (No. CSSR Working Paper No. 74). Cape Town: Centre for Social Science Research.
Campbell, C. 2001. HIV/AIDS research in South Africa: Developing theory through action and for action, Plenary address at the ‘AIDS in Context’ Conference, University of the Witwatersrand, 4-7
Carael, M., Curran, L., Gacad, E., Gnaore, E., Harding, R., Mandofia, B., 2000. Protocol for the Identification of Discrimination Against People Living with HIV. Geneva, Switzerland: UNAIDS.
Crawford, I., Allison, K., Robinson, W., Hughes, D. & Smaryk, M. 1992. Attitudes of African American Baptist ministers towards AIDS. Journal of Community Psychology, 20(4), 304-308
Crewe, M., 1992. AIDS in South Africa. Harmsworth: Penguin.
Das, V., 2002. Stigma, contagion, defects: Issues in the anthropology of public health.
Deacon, H., Stephney, I. & Prosalendis, S., 2005. Understanding HIV/AIDS Stigma: a theoretical and methodological analysis. Human Sciences Research Council Press
Devine, S. & Graham, D. 1999. How having HIV positive parents affects the lives of orphans. AIDSNET News, 1(3):38-45
Douglas, M. 1995. Risk and Blame: Essays in Cultural theory. London: Routledge.
Fassin, D. 2002. ‘Embodied history: Uniqueness and Exemplarity of South African AIDS’, African Journal of AIDS Research (1):63-68
Gilmore, N. & Sommerville, M. 1994. Stigmatization, scapegoating and discrimination in sexually transmitted diseases: Overcoming ‘them’ and ‘us’. Social Science and Medicine, 39(9), 1359-1366.
Goffman, E. 1963. Stigma: Notes on the Management of a Spoiled Identity. Englewood: Prentice Hall, Inc.
Golden, C. 1994. Stigmatization and AIDS: Critical Issues in public health. Social Science and Medicine, 39(9), 1359-1366
Heatherton, T., Kleck, R., Hebl, M. & Hull, J. 2003. The Social Psychology of Stigma. Guildford Press
Kalichman, S.C. & Simbayi, I., 2004. Traditional beliefs about the cause of AIDS and AIDS-related stigma in South Africa. AIDS Care 16(5):572-580
Kok, G., Kolker, L., de Vroome, E. & Dijker, A. 1998. ‘Safe Sex’ and ‘Compassion’: Public campaigns on AIDS in the Netherlands. In T. Sandfort (ed), the Dutch response to HIV: pragmatism and consensus. London: UCL Press.
Leclerc-Madlala, S. 2002. On the Virgin cleansing myth: Gendered bodies, AIDS and ethno medicine, African Journal of AIDS Research 1(2):87-95
Lee, R., Kochman, A. & Sikkema, K. 2002. Internalized stigma among people living with HIV/AIDS. Aids and Behavior, 6(4), 309-319
Lie, G. & Biswalo, P., 1994. Perceptions of the appropriate HIV/AIDS counselor in Arusha and Kilimanjaro regions of Tanzania: Implications for hospital counseling. AIDS Care, 6(2), 139-151
Mann, J. 1996. The impact of homophobia and other social biases on AIDS. United States of America: Public Media Center.
McGrath, J. 1992. The biological impact of social responses to the AIDS epidemic, Medical Anthropology 15(1):63-79
Mo Kexteya. P. 2004. Final report of Diagnostic phase. Mexico City: National Institute of Public Health of Mexico.
Mont, D. 2007. Measuring Disability Prevalence, SP Discussion Paper No.0706. The World Bank
Parker, R. & Aggleton, P. 2003. HIV and AIDS related stigma and discrimination: a conceptual framework and implications for action, Social Science & Medicine 57:13-24
Peterson, G. 1996. Women in the time of AIDS. New York: Orbis Books
Prior, I., Wood, F., Lewis, G., & Pill, R., 2002. Stigma revisited, disclosure of emotional problems in primary care consultations in Wales, Social Science and Medicine 56:2191-2200
Ross, F. & Levine, S. 2002. Perceptions of and attitudes to HIV/AIDS among young adults at UCT. CSSR Working Paper, No. 11, Cape Town.
Sabatier R. 1988. Crossing the threshold of fear. AIDS Watch, (3):2–3.
Schellenberg, E., Keil, J. & Bem, S. 1995. ‘Innocent victims’ of AIDS: Identifying the subtext. Journal of Applied Social Psychology, 25(20), 1790-1800.
Sealey, G., 1995. We are our own enemies. In Reid E, ed. HIV and AIDS: The Global Interconnection. West Hartford, Connecticut: Kumerian Press
Skinner, D., 2001. Stigma and the ABCD: a consideration in South Africa, Unpublished Paper, HSRC.
Wright, K. 2000. The Stigma of AIDS. WIPHN News 25: 6-7