Recognizing and Dealing with HIV/AIDS related Stigma and Discrimination: Recognizing and Dealing with HIV/AIDS related Stigma and Discrimination Vivian A. Gray Jr. National AIDS Committee April 4, 2006


What is Stigma?: What is Stigma? It is not a thing…. It is a process The process is that of “devaluation:” i.e. discrediting / lowering a person in the eyes of society


Why stigmatize?: Why stigmatize? Erving Goffman, US Sociologist (1963): “The stigmatized individual is a person with a “spoiled identity” who is rendered “unworthy” in the eyes of others”


How does the process work?: How does the process work? Within a particular culture or setting, certain qualities are expected Within that culture or setting, misfits are viewed and defined by others as: unworthy, deviant, blameworthy Simply because they are different!


Hero or Deviant?: Hero or Deviant?


The 4 Features of Stigma: The 4 Features of Stigma Sociologists Gilmore & Sommerville (1994) have described the 4 main features of stigmatization: 1. There is a problem which initiates a certain reaction Those who feel threatened identify a group or individual to be targeted; 3. Those who feel threatened assign stigma to this individual or group 4. Those who fee threatened then develop appropriate stigmatizing response


Where does stigma come from?: Where does stigma come from? Stigma attaches itself to certain qualities, which are seen as undesirable. Example: The way someone talks The things that they do The colour of the skin Where they live It is therefore the “quality” which is used to discredits an individual in the eyes of others.


Where does stigma come from?: Where does stigma come from? “spoiled identity” or “Unworthiness” may stem from: a particular characteristic such as physical deformity Negative attitudes toward a particular behaviour. The negative attitude labels the particular individual as “deviant” or “different”


How is stigma expressed?: How is stigma expressed?


How is stigma expressed?: How is stigma expressed? Rejection Isolation Mocking comments Rude behaviour These behaviours often result in Discrimination


Why is there stigma?: Why is there stigma? The need for “social control” of a problem The need to exercise power over individuals who show unworthy characteristics The need to disassociate oneself from the unworthy: Through marginalization


Why is there stigma?: Why is there stigma? Because escape from or destruction of a perceived threat seems impossible It is a a means of coping with the perceived threats


Why is there stigma? : Why is there stigma? “Sheran, ah pregnant yu pregnant?”


Why is there HIV and AIDS related stigma?: Why is there HIV and AIDS related stigma? Diseases have always carried stigma Leprosy Tuberculosis Cancer Mental Illness Like many other illnesses, HIV and AIDS are often seen as shameful


Why is there HIV/AIDS-related stigma?: Why is there HIV/AIDS-related stigma? Society has always rejected “misfits” Homosexuals, sex workers, persons with mental illness, the physically deformed HIV-related stigma is multi-layered: It builds on negative connotation by associating HIV and AIDS with already marginalized behaviours such as sex work, drug use and homosexual practices


Why is there HIV and AIDS related stigma?: Why is there HIV and AIDS related stigma? McGrath (1992): By stigmatizing persons living with or affected by HIV and AIDS, society can excuse itself from the responsibility of caring for and looking after such persons.


Why is there HIV and AIDS related stigma?: Why is there HIV and AIDS related stigma? HIV and AIDS are linked to “wrongdoing” associated with sex, illegality or socially unacceptable activities: Injecting Drug Use Men are seen as homosexuals, bisexuals or having had sex with sex workers Women are viewed as promiscuous or sex workers


What causes HIV and AIDS related stigma?: What causes HIV and AIDS related stigma? HIV and AIDS are believed to bring shame upon the family and community; Lack of knowledge about HIV and AIDS Transmission Persons at risk Disassociation (“us” and “them”)


What Drives Stigma?: What Drives Stigma? HIV is a life-threatening illness Moral fault Fear of illness of contagion of death Stigma is a means of coping with fear Fear is easier to cope with when blame is laid on minority or “deviant” groups


What drives Stigma?: What drives Stigma? Powerful images in the print and media are used to reinforce and legitimize stigma


The Extent of HIV and AIDS related Stigma: The Extent of HIV and AIDS related Stigma HIV/AIDS-related stigmatization affects: Persons really infected Persons suspected of being infected Persons associated with them Orphans Children Families


“Self” / Internalized Stigmatization: “Self” / Internalized Stigmatization Real or imagined fear of societal attitudes and potential discrimination arising from a particular undesirable attribute Example: Refusal to use or buy condoms out of fear of possible negative reaction from partners


Self Stigmatization: Self Stigmatization In the context of HIV and AIDS, stigma occurs on a more dangerous level People living with HIV may themselves internalize the negative responses and reaction of others


The Dangers of internalized stigma: The Dangers of internalized stigma This leads to feelings of shame, self-blame and a sense of worthlessness. Combined with feelings of being isolated, this can lead to depression, withdrawal and suicidal tendencies


The effect of Stigma on HIV related behaviours: The effect of Stigma on HIV related behaviours Vulnerable populations refuse testing PLWHA aware that many people with HIV have been treated badly by others, may conceal their sero-status To the extent these individuals are success in ‘passing” as non-infected or not at risk, they will unwittingly increase the number of HIV cases


The effect of Stigma on Preventive behaviours: The effect of Stigma on Preventive behaviours Stigma keeps people from learning their HIV status through testing and discourages them from telling their partners and as a result they infect them. Negatively affects preventive behaviours such as condom use and testing Results in denial of own risk perception Creates silence around the issue Associate condom use with unclean behaviours


The effect of Stigma on care-seeking behaviours: The effect of Stigma on care-seeking behaviours Embarrassing or threatening to seek care associated with HIV Risk of breach of Confidentiality by health care providers and observers Negatively affects the quality of care given to HIV+ patients due to: Attitude of health care worker Health care workers are often trained only in knowledge and skills without addressing confidentiality and attitudes


The effect of Stigma on care-seeking behaviours: The effect of Stigma on care-seeking behaviours Stigma keeps people who suspect they are positive from accessing treatment and counseling services. Stigma discourages people from using other services (pregnant woman from taking ARVs) Stigma prevents people from caring for people living with HIVand AIDS.


The effect of Stigma on HIV related behaviours: The effect of Stigma on HIV related behaviours Negatively affects the support given by partners, families and communities Persons only treating infections at an advanced stage Suicidal tendencies Avoidance of testing “Why get tested if one risks losing job, family, relationships


Economic Impact of HIV/AIDS related stigmatization: Economic Impact of HIV/AIDS related stigmatization Loss of valuable employees by workplaces Loss of income for households through loss of jobs It is therefore critical that effective interventions are undertaken to reduce stigma


Effect on Health Care Costs: Effect on Health Care Costs HIV/AIDS related stigmatization causes resources to be wasted New infections continue to emerge. Why? HIV has been driven underground Misconception about persons at risk Misconceptions about transmission Social categories (“US” and “THEM”) and barriers cannot contain HIV!


Individual Reflection: Individual Reflection


Individual Reflection: Our Own Experience Of being Stigmatized: Individual Reflection: Our Own Experience Of being Stigmatized Think about a time in your life when you felt isolated or rejected for being seen to be different from others—or when you saw other people treated this way. This does not need to be examples of HIV stigma—it could be any form of “isolation or rejection for being seen to be different. What happened? How did it feel? What impact did it have on you?


What is Discrimination: What is Discrimination When Stigma is acted upon, the result is discrimination: It includes: Arbitrary actions against the affected person Exclusion Restrictions Denials


Where does discrimination occur?: Where does discrimination occur? In the Family and Community Setting Deliberate acts aimed at harming others. Ostracism; Verbal harassment; Physical abuse; Gossip; Denial of traditional funeral rites


Where does Discrimination occur?: Where does Discrimination occur? In institutional settings: Workplaces Denial of employment based on HIV+ status; compulsory testing; eclusion of HIV+ persons from employment sechmes and medical benefits. Healthcare services Reduced standard of care; breach of confidentiality; negative attitudes and degrading practices


Where does discrimination occur?: Where does discrimination occur? Prisons: Mandatory testing and segregation of HIV+ individuals; Schools Denial of entry to HIV+ / affected children Dismissal of teachers


Where does discrimination occur?: Where does discrimination occur? A very Dangerous Level – The national Level Here discrimination reflects stigma that has been officially sanctioned or legitimize through existing laws, policies and procedures


Discrimination at the National Level: Discrimination at the National Level Compulsory screening and testing of groups of individuals Limitations on international travel Failing to implement laws, policies and procedures that offer redress and safeguard the rights of persons living with / affected by HIV and AIDS


Stigma, Discrimination and Human Rights Connection: Stigma, Discrimination and Human Rights Connection Stigma lies at the root of discrimination This leads people to engage in actions or omissions that harm others Because of this, discrimination is a violation of a person’s human rights to freedom from discrimination


Stigma, Discrimination and Human Rights: Stigma, Discrimination and Human Rights Discrimination directed at PLWHAs leads to violation of other fundamental human rights: The right to healthcare The right to dignity The right to privacy Equality before the law Freedom from inhuman and degrading treatment


The Cycle of Stigma, Discrimination and Violation of Human Rights: The Cycle of Stigma, Discrimination and Violation of Human Rights A social environment which promotes violation of human rights in turn legitimate stigma and discrimination


Violation of Human Rights: Impact on HIV prevention efforts: Violation of Human Rights: Impact on HIV prevention efforts A person who is dismissed from his/her job because of being HIV+ is faced with many additional problems: Including lack of economic resources for his healthcare Inability to provide for family and dependents The result: Treatment, care and support for himself and dependents must come from the consolidated fund. This may reduce availability of funds to subsidize healthcare.


Violation of Human Rights: Impact on HIV prevention efforts: Violation of Human Rights: Impact on HIV prevention efforts People are more vulnerable to infection when their civil, political and social rights are not respected Lack of access to appropriate HIV prevention and care services increase the vulnerability of marginalized groups such as prisoners and injecting drug users


How can we reduce Stigma?: How can we reduce Stigma? Advocate for rights-based anti-discriminatory laws and policies Call for the implementation and enforcement of supportive laws and policies that punish discrimination and safeguard the rights of every person (including PLWHAs) Implement policies in the workplace, prisons, health centres Educate PLWHAs about their rights as patients and about how to challenge discrimination


How can we reduce Stigma?: How can we reduce Stigma? Lead the Change of Opinions and Beliefs PLWHAs are a normal part of society Design careful messages so as not to contribute to stigma ---- PLWHAs are no different from anyone else Change your own attitudes / practices Avoid stigmatizing words/phrases/language related to HIV or people living with HIV Be careful not to send mixed messages Discourage lose talk about HIV and transmission


How can we reduce Stigma? : How can we reduce Stigma? Form Alliances with opinion leaders Opinion leaders play a central role in the community in changing perception Mobilize political representatives, religious leaders, health providers; the media Seek representational rights on boards / crucial meetings of policy makers.


How can we reduce Stigma?: How can we reduce Stigma? Conduct interventions at the community level, ensuring the participation of PLWHAs Why? As long as HIV+ persons are seen as different it will be easier to attach labels and stigmatize them. Increasing the community’s familiarity with HIV and AIDS and their contact with PLWHAs, personalizes the infection and helps to reduce stigma.


How can we reduce Stigma? : How can we reduce Stigma? Increase involvement of PLWHAs In addition to personalizing HIV for the benefit of the community, PLWHA involvement allows PLWHAs to redefine their illness, reconstruct their identities and develop tools to reduce stigma Encourage PLWHAs to speak out when discrimination occurs / disclose their sero-status


How can we reduce Stigma? : How can we reduce Stigma? Provide / advocate for Capacity Building for PLWHA Psychological support Skills building Income generating activities Showing PLWHAs as active and contributing members of the community reduces stigma


How can we reduce Stigma?: How can we reduce Stigma? Build Capacity and change attitudes of Health Care Workers Advocate for implementation of codes of ethics and professional conduct within health care service centres Ensure such codes are enforced Advocate for practical HIV-related training for health-care workers to promote better understanding, to promote confidentiality and to reduce anxiety among staff.


“Pon di river, Pon di Bank”: “Pon di river, Pon di Bank”


We are all in the same boat: We are all in the same boat There is no separation between “us” and “them” We are all facing and living with HIV and AIDS together – we are all affected We have all taken risks and made mistakes at one time in our lives Lots of people like to laugh at, blame and judge others, but one day they may also fall “into the river” and others will laugh at them. Remember always: HIV affects everyone All of us are at risk of contracting HIV so there is no point in stigmatizing or blaming those who are already affected. We could join them one day.


How can we reduce Stigma?: How can we reduce Stigma? “Change your thoughts and you change your world” Norman Vincent Peale