Chapter 2: Combating Stigma and Discrimination
Stigma is a powerful tool of social control. Stigma is often used to marginalize and exclude certain groups and populations. In the past 25 years, since the beginning of the AIDS pandemic, stigma and homophobia have been big hindrances to HIV prevention. In this chapter you will learn in more detail what stigma is and how to recognize it when it occurs. You will also learn ways in which your ministries can join with other churches in the mission of combating stigma and homophobia together.
Keywords: Stigma, homophobia, discrimination, exclusion, rejection
It's time for a group exercise!!!
Individually, take several moments and think about the term stigma. How do you define it or what do you think stigma looks like in action? Write your thoughts in the space below:
After several minutes of brainstorming, discuss your thoughts as a group. What thoughts did you come up with? What did others come up with? Write down those ideas in the space provided:
Stigma can appear in many forms including:
Were any of the above items on your list? The items listed are just some of the ways stigma affects individuals living with HIV or AIDS but remember, stigma is not limited to these things.
Now that you have come up with some great ideas about stigma and what it is, is it time you change the way you think about HIV and AIDS? We are all involved in stigmatizing the people and environment around us and may not even realize it. Discrimination against people who are living with HIV or AIDS is so prevalent and is expressed in so many overt and covert fashions that people may not even realize they are contributing to the problem. Knowing what stigma is can help you fight against it and enable your HIV ministry to fight more effectively against HIV/AIDS.6
Is your HIV ministry ready to take steps to address stigma and eradicate it?
So what is stigma?
The idea of stigma generally refers to anything that labels someone as unacceptable or inferior.1 Stigma can be associated with a physical condition or disfigurement, moral blemish, membership in a despised group, or simply being different from the "norm." The afflicted person may be cast off out the community, and may be made to feel like he or she has little or no worth. As a result, people who are stigmatized often experience shame, guilt, and rejection. The stigmatized person may be held responsible for the ills of the community, and the only way to cleanse the community would be isolation. The stigmatized person's presence becomes a threat to the survival of the whole community.2
Exclusion and victimization are fueled by the belief that those who are different are "less human" therefore they do not feel what "normal people" feel. Stigmatization may be justified by saying the person's suffering is inevitable because they have sinned and are now a threat to others. Isolating stigmatized individuals would be giving them "the punishment they deserve."2
HIV-related stigma refers to all unfavorable attitudes, beliefs, and policies directed at those living with HIV or AIDS. Unfavorable attitudes and beliefs may also be directed at the person's friends, family, social groups or community. The family plays an important role in providing support to a family member living with AIDS. However, not all families offer the needed support and encouragement to a person living with AIDS. Rather, they may turn their backs on their sick loved one and contribute to stigma.4
Patterns of prejudice, which include discrediting, discounting, devaluing, and discriminating strengthen the already existing social inequalities.3 In many societies, people who are living with HIV or AIDS are seen as shameful. Often, HIV is associated with minority groups, men who have sex with men, or those who use drugs.4 HIV-related stigma is often compounded when affected individuals come from already stigmatized groups such as those who are homosexual, bisexual, promiscuous, use drugs, those who are sex workers, the poor or the disenfranchised.10
Homophobia also increases HIV-related stigma.11 Homophobia is the fear of, aversion to, or discrimination against homosexuality. The fear is often irrational. In addition, it can be seen as hatred, hostility, disapproval, or prejudice towards homosexual people, and "deviant" sexual behaviors.12 Homophobia permeates the negative social attitudes about HIV/AIDS, sexuality and sexual behavior. Because of the association with gay and bisexual men at the beginning of the AIDS epidemic, many continue to hold the notion that AIDS is a "gay disease." The link between societal homophobia and AIDS was established many years ago when AIDS was still known as Gay-related Immune Deficiency (GRID). It was only after the disease was being seen in other populations, including women, that the name was changed to AIDS.13
HIV/AIDS is a complicated and confusing social challenge faced by society. Ever since it became known as a disease in the early 1980s, it has often been associated with fear, stigmatization, discrimination and exclusion. It was suggested society would see another epidemic -- the epidemic of discrimination that followed the HIV/AIDS epidemic. Despite numerous efforts to change the negative attitudes and discrimination associated with HIV/AIDS, the disease continues to carry a significant stigma that impacts many areas of society.3 Stigma related to HIV continues to be a major barrier in effectively fighting against the HIV and AIDS epidemic.4 HIV/AIDS-related stigma interferes with the well-being of people living with the disease. Stigma may increase new HIV infections because it can discourage people from getting tested, make people less likely to acknowledge their risk, and discourage people who are HIV-positive from discussing their status with their sexual partners or needle-sharing partners.5 They may choose not to protect themselves or others, and they may not seek treatment if they are infected. Stigma affects all aspects of HIV prevention, diagnosis, treatment, and care.3
Stigmatization may range from subtle actions of discrimination to extreme degradation, rejection, abandonment, and physical violence. Stigma can be acted out in various forms, including:
- Exclusion, rejection, avoidance of people with AIDS
- Discrimination that leads to loss of job, housing
- Compulsory HIV testing without prior consent or protection of confidentiality
- Violence against the person
- Quarantining the person
- Loss of friends and family14
- HIV/AIDS is a life-threatening disease, perceived to be contagious and threatening to the community. The disease is not well understood which contributes to fears.
- People living with HIV are often seen as responsible for having contracted the disease, which increases feelings of guilt.
- HIV/AIDS is related to behaviors sanctioned by religious and moral beliefs, which results in the belief HIV is the consequence of deviant behavior and deserves punishment.
- HIV/AIDS is associated with pre-existing social prejudices such as sexual promiscuity, homosexuality and drug useâ??behavior that is already considered 'less worthy' by many societies. HIV then adds to the existing societal judgment. HIV-related stigma is therefore born from fear and ignorance7,8
In a comparison study conducted by Herek, Capitanio, and Widaman (2002), it was found that many Americans believe that those who contracted AIDS through sex or drug use deserve their illness. It was also found that many Americans still express fear and discomfort about people with AIDS, would feel uncomfortable if their children attended school with a child who is HIV-positive, and would feel uncomfortable working with a co-worker who has AIDS. There also continued to be mistaken beliefs on how AIDS is transmitted. There were beliefs that AIDS could be transmitted from using a public toilet, being coughed on by a person living with AIDS, sharing a drinking glass, or by donating blood. However, in 1999 only 12% of people polled said that people living with AIDS should be isolated from the rest of society. That number is down from the 1991 statistic where 34% of people felt that people living with AIDS should be removed from society.13
The belief that AIDS is easily spread and that people should be blamed for their illness is a contributing factor in the maintenance of stigma. Problems, however, can be addressed in AIDS education programs. In the earlier years of the AIDS epidemic education programs stressed that AIDS could not be spread by being in contact with someone who has sneezed or by using the same drinking glass. It is evident that education programs need to continue to remind people how AIDS is transmitted and how it is not.13 Your HIV ministry can be effective in educating the community about what AIDS is and how HIV is transmitted.
Take several moments and ask yourself the following questions. Write your responses down. You do not have to share your answers aloud.
- Do you know what AIDS is, and how HIV is transmitted?
- Are you angry with people who have HIV/AIDS?
- Do you contribute to the stigma that is fueling the AIDS epidemic?
- Do you believe AIDS is specific to certain groups and populations?
- Do you become angry when you see gay men or injection drug users?
- Are you afraid to be in a room with a person who has HIV/AIDS?
- Would you have separate eating utensils for a family member living with HIV/AIDS?
- If you work with an individual who has HIV/AIDS would you avoid using the restroom?
- Do you believe people at-risk for contracting HIV should be required to be tested on a regular basis?
- Do you know the facts to be able to accurately educate your church about the facts, or do you still have questions regarding the facts?
- Are you ready to address the stigma that many people living with HIV/AIDS face on a daily basis?
Not in my backyard...
Below are two vignettes about individuals plagued by Stigma.
For many years, John was a respected elder in his church on the North side of Chicago. While there were community resources regarding HIV/AIDS, when it came to HIV/AIDS education in the church, many people felt "this is not our problem." Rather, they believed AIDS was specific to those who use drugs or among those who engage in "sinful sexual behavior." In 1995, when John's two children were 11 and 7, his wife died. The death certificate said pneumonia, but the doctors told John it may be AIDS and that he should be tested. John said he felt like dying when he heard his test results. He was desperate and needed advice so he went to the head pastor.
"John, you are a disgrace to the Church. If you want to keep your position in this church you must not tell anyone about your illness, and if anyone asks you are to tell them you have cancer," said the pastor. John decided to do the opposite of what he'd been instructed. He felt this was a prime time to shed light on the realities of AIDS. He didn't want to treat his illness as taboo or as something that would go away if he didn't talk about it. He felt if he shared his story, others in the church would learn that AIDS does not discriminate. He disclosed his HIV status only to find he would suffer from ridicule, blame, and stigmatization. John's children also suffered from his illness. They were teased and separated from the others at school. Without a job or money John felt hopeless. John said if it hadn't been for his children, he would have killed himself.
One day, John met a person who is an AIDS counselor/advocate. John said, "This man saved my life. He offered me education, advice and options." Today, John has established a new ministry in his community. He has made many friends, he is accepted and his ministry is a great value to those he serves. John said he does not feel like a contagious rash, but rather someone who gives hope to others. John does not regret disclosing his status and he knows he can help change how the church views HIV/AIDS.
Keisha lives in suburban Northfield. Keisha is a high school senior and spends most of her evenings participating in youth activities in her church and has a very promising future, especially within the ministry at her church. One day, while attending a community youth revival she met Xavier. They hit it off well during the revival and continued to see one another after the revival was over. They spent a lot of time together and even talked about marriage after they graduated high school. They both loved one another and knew they would spend the rest of their lives together. Keisha felt it was right to share an invaluable part of herself with Xavier. One day, shortly after the two had been sexually intimate Xavier went to Keisha's house and delivered the news that he is HIV-positive, and had known for several years.
He told her he was sorry and never meant to hurt her. He told her she should probably be tested. Keisha has not seen Xavier since. Her mother took her to a clinic over 75 miles away, where no one would know her. The test came back positive and Keisha's father has not said a word to her since that dreaded day.
Seeking support, Keisha went to her youth and senior pastors. Rather than console Keisha and offer hope and acceptance, she was condemned and then the pastor preached publicly about her sinfulness. Other parents in the church threatened to remove their children from the youth activities unless she left the church. At home, Keisha has her own dishes and bedding and the family built an extra bathroom with a shower in her room that only she would use. When people come to visit she is sent to her room. Keisha's suffers from discrimination in more ways than one. Not only is she HIV- positive but she is also part of the minority group in her community and only one of few African Americans in her school. At 17, Keisha feels her life is over.
The previous stories are familiar to anyone living with HIV or AIDS. In both examples, the church has contributed more to the problem than the solution. Reverend Canon Gideon Byamugisha, of the Namirembe Diocese of the Anglican Church of Uganda, is living openly with AIDS. He says, "It is now common knowledge that in HIV/AIDS, it is not the condition itself that hurts most -- because many other diseases and conditions lead to serious suffering and death -- but the stigma and the possibility of rejection and discrimination, misunderstanding and loss of trust that HIV positive people have to deal with."1
Despite the progress society has made, those living with HIV or AIDS continue to be plagued by stigma. Often, people are judgmental because people do not know. Discrimination and stigma in the church and community may actually contribute to the spread of HIV/AIDS. Stigma is a major obstacle in effectively preventing HIV. In order to reduce the prevalence of AIDS, the stigma associated with it must be confronted.9 Faith-based organizations are strongly encouraged to take a stand against stigma and discrimination and confront the religious, social, cultural, and political customs and behaviors that maintain stigma.
Eight suggestions for combating stigma and homophobia
- Stop seeing AIDS as an 'us' and 'them' issue. AIDS IS in the church.
- Base education on real experiences, not idealistic expectations about human behavior.
- Encourage theological and ethical reflection of HIV/AIDS.
- Welcome people living with AIDS as a valuable resource.
- Build welcoming, non-stigmatizing communities.
- Break the conspiracy of silence.
- Pray for people living with HIV/AIDS openly in your congregation.
- Preach and talk about HIV in a loving, non-judgmental, non-homophobia way.2
Additional tips on how your ministries can get involved
- Coordinate HIV testing at your church and, as an example, each of you could receive HIV testing.
- Develop and implement training, policies and procedures for your ministry staff.
- Coordinate educational seminars and provide HIV prevention material.
- Involve people living with AIDS in your educational seminars.
- Show the diversity of the epidemic.
- Be proactive and partner with other AIDS organizations and become a community advocate for people living with HIV.
- Collaborate with other faith-based organizations and leaders from the community.
- Confront stigmatizing messages in the media.
- Speak to your congregation about compassion, love, hope, and healing that will shatter the stigma, judgment, and homophobia that is often associated with HIV/AIDS.
- Stay committed and remember to work as a team.
It's time for another exercise!!!
As an individual, do you or have you done things that contribute to stigma? (You don't have to answer aloud! But write down any thoughts you have.)
Can you see how homophobia contributes to the hindrance of HIV prevention?
As a ministry, what have you done to confront stigma? Have you done everything you could? Is there more your ministry can do?
Can you talk openly about the love of God to those who seek to stigmatize based on sexual orientation?
How can you take what you have learned in this section and implement it into your ministry?
Now that you have finished this section are you ready to go out and face stigma head on? Your help is needed in the fight against HIV/AIDS and your ministry is a valuable resource. Now, go out there and be a force against stigma.
- Plan of Action: The Ecumenical Response to HIV/AIDS in Africa World Council of Churches 2001. Available on www.wcc-coe.org/wcc/news/press/01/hiv-aids-plan.html.
- The Ecumenical Advocacy Alliance: Church, AIDS & STIGMA. Available on www.e-alliance.ch/media/media-3859.pdf
- Visser, M.J.; Makin, J.D. & Lehobye, K. (2006). Stigmatizing attitudes of the community towards people living with HIV/AIDS. Journal of Community & Applied Social Psychology, 16, 42-58.
- Stigma, discrimination and attitudes to HIV & AIDS. Available on www.avert.org/aidsstigma.htm
- Stigma & HIV/AIDS: A Review of the Literature. Available at http://hab.hrsa.gov/publications/stigma/introduction.htm
- Thoughts Speak Volume: It's time to change the way we think about HIV & AIDS. Available at www.endhivstigma.ca/stigma.html
- Alonzo, A.A. & Reynolds, N. R. (1995). Stigma, HIV and HIV: An exploration and elaboration of a stigma trajectory. Social Sciences and Medicine, 41(3), 305-315.
- DeBruyn, T. (1999). HIV/AIDS and discrimination 2: Stigma and discrimination, definitions and concepts. Ottawa: Canadian HIV/AIDS Legal Network and the Canadian AIDS Society.
- Stigma, by Jeanine Cogan and Gregory Herek (1998). Available at www.thebody.com/content/art14039.html
- HIV stigma, treatment and prevention, by Theo Smart. Available at http://hivinsite.ucsf.edu/InSite?page=pa-hatip-56
- Homophobia. Available at http://web.missouri.edu/~umcstudentlifelgbt/ resources/homophobiahurtseveryone.pdf
- Homophobia. Available at http://en.wikipedia.org/wiki/Homophobia
- Herek, G.M., Capitanio, J.P., & Widaman, K.F. (2002). HIV-related stigma and knowledge in the United States: prevalence and trends, 1991-1999. American Journal of Public Health, 92(3).
- HIV/AIDS Stigma. Available at http://psychology.ucdavis.edu/rainbow/html/aids.html
- I John 4:20
- Romans 5:8
- Anti-Defamation League on the Westboro Baptist Church www.adl.org/special_reports/wbc/default.asp