Stigmas: Beliefs Determine Behaviour

[1]. from the Introduction

"Many people are calling urgently for laws and policies to curtail or prevent HIV/AIDS stigma. This is a call for changes in structures. It is also a useless exercise until such time as we examine the roots of stigma, and understand it’s very nature. Then we can build structures to support the understandings and mechanisms that alleviate stigma.

What exactly is stigma anyway? For the sake of this discussion, we will define stigma as a behavior or policy/law that unfairly and negatively impacts upon the rights, life, and opportunities of a person living with HIV. To distinguish this form of discrimination from other types (e.g., gender or racial discrimination), it needs to be motivated primarily in the perpetuator by his or her knowing that the other person is living with HIV or AIDS. HIV/AIDS stigma is thus essentially discrimination based upon HIV status.

Is HIV/AIDS stigma different from any other form of discrimination? This is a difficult question. Stigma is not exactly the same as discrimination, at least in terms of connotation. Stigma has an additional connotation to discrimination, namely of strong emotional rejection, over and above structural inequity. In this sense, one would explain the expelling of a woman from her home by her family as due to fear-based ‘stigma’, while one would hardly be inclined to call it ‘discrimination’, at least not in the common usage of the term. We would hazard a guess in that ‘stigma’ is characterized by overt fear, whereas 'discrimination’ is not always overt. We therefore propose that stigma is the extreme end of a discrimination continuum.

Core questions we need to ask are: What causes people to behave in a stigmatizing manner? What causes people not to change fear-based stigmatizing behavior, even when they have knowledge about that casual contact is safe? Why are people treating their loved ones, colleagues, employees, and friends in such extreme and inhumane ways? Why is stigma so widespread, regardless of social, educational, or economic strata? How do those infected contribute to the perpetuation of stigma?"

In order to answer these questions, the authors have divided their 19-page paper into the following sections:

• [2]. Beliefs and behavior
• [3]. Is objective exploration possible?
• [4.1]. Belief 1: “If you have HIV you’re going to die, so I won’t invest resources in you”.
• [4.1.2] Counteracting withdrawal of resources
• [4.1.2.1.] Instead of using fear as the primary message and motivator, focus upon the impact of HIV/AIDS (or malaria, poverty, etc) on a desired future, both by the individual and community. This presumes the existence of a desired future, and if absent, the creation of one.
• [4.1.2.2] Victims get persecuted. PLWHA’s need to avoid supporting a Victim Persona.
• [4.1.2.3] Focus upon the possibility of living with HIV, versus dying from AIDS.
• [4.2] Belief 2: “HIV/AIDS is a punishment for sin”.
• [4.2.1] The need to blame-shame-punish
• [4.2.2.] Internalized stigma
• [4.2.3] Shifting the blame-shame-punishment to those who stigmatize others
• [4.2.4] Blaming and shaming the PLWHA
• [4.2.5] Counteracting blame-shame-punishment
• [4.2.5.1] Challenging Victim Theology
• [4.2.5.2] Political vision and leadership
• [4.3] Belief 3: “It’s the way we do things”
• [4.3.1.] Can – and should – culture be protected from change and evolution?
• [4.3.2] Cultural evolution as a method of group survival: The danger of ethnocentric strategies
• [4.3.3.] Tell the whole truth, and trust cultures to deal with it
• [4.3.4] Stigma burn-out as an inevitable stage in the pandemic
• [4.3.4.1] Accelerating stigma burn-out

[5]. from Conclusions

"In conclusion, stigma is in essence one of two things: The onset of a Dark Age of fear, pain and social fragmentation, or the opportunity for a Renaissance – a revival of a new social order, based upon greater compassion and understanding. The only way to head off this potential 21st century Dark Age is the open questioning of what we hold to be true in our cultures.

In order for us to be effective, we must challenge people’s core beliefs. We have spent 20 years trying to fix everything except what really needs to be fixed. We are addressing everything except our core beliefs, and yet it is these very beliefs that are creating the problem.

There is only one solution, if we hope to make any difference at the social level. We must challenge people’s beliefs. When we can do this, we can then make a real impact on stigma, discrimination, gender inequity and a range of other social issues. What are those values we want to share? How do we want to live? Unlike past generations, we cannot say “For my children I want ...” If we wait and delay, it will be too late. This time, we need to start with “For me, and my children, I want ...”

It is small comfort to those infected who have been stigmatized to know that there is a larger social process which is occurring, and that at some point things change for the better. However, this is how it happens in every society. Therefore, continue to challenge the fear and ignorance – fight with understanding, knowing that you are helping to accelerate the larger process. However, always remember that the change starts with you – your beliefs about yourself. Question these beliefs, and then you have earned the right to challenge the beliefs of others."

Please contact David Patient at the address below for the 19-page article in its entirety.