Stigma and Discrimination Against Women Living With HIV
November 8, 2015
Table of Contents
- What Are Stigma and Discrimination?
- Why Does HIV-Related Stigma Exist?
- Stigma's Harmful Effects
- Criminalization of HIV
- Triumphing Over Stigma and Discrimination
Do any of these sound familiar to you?
- "I don't tell people I have HIV because I don't want them to judge me."
- "I was told that HIV-positive people should not have children. Because I have HIV, I was sterilized."
- "They kept me out of the kitchen and stopped talking to me because I have HIV."
- "I know I got this through sex. I feel really ashamed having a sexual disease and am no longer interested in having sex."
- "No one could really want to be with someone who has HIV."
These are examples of stigma and discrimination that are all too common for many women living with HIV (HIV+). Throughout the HIV epidemic, stigma and discrimination have had enormous impact on women and girls. Yet despite its devastating effects, stigma often receives the bottom-most priority in HIV programming. As Michel Sidibé, the Executive Director of UNAIDS, said:
"Whenever AIDS has won, stigma, shame, distrust, discrimination and apathy was on its side. Every time AIDS has been defeated, it has been because of trust, openness, dialogue between individuals and communities, family support, human solidarity, and the human perseverance to find new paths and solutions."
(Giving Power to Couples to End the AIDS Epidemic)
Stigma is an attitude or belief about a person or group of people that discredits or shames them. It highlights a perceived negative 'difference' between people and uses that difference as a label (e.g., HIV+) to separate people into "us" (good) and "them" (bad). This categorizing is ultimately a social or cultural experience that makes the stigmatized seem 'less than' and reduces their power.
Discrimination refers to the acts taken as a result of stigmatizing beliefs. If a woman's mother-in-law thinks that she is dirty or unclean because she is living with HIV, the woman living with HIV faces stigma in her household. If her mother-in-law refuses to allow her in the kitchen because she thinks she is dirty, then the woman living with HIV is facing discrimination as well.
Both stigma and discrimination can be complicated experiences that occur at different levels and in different forms. They can happen between individuals (as in the example above), or they can happen at a broader, social level (e.g., when a whole community rejects or 'turns out' a member who is living with HIV). They can be visible and obvious (e.g., when a person living with HIV is refused health services), or they can be more indirect (e.g., a health care provider using unnecessary precautions when treating a person living with HIV).
People living with HIV can also hold negative beliefs about HIV and stigmatize themselves. This is called self-stigma, or internalized stigma. For many women living with HIV, the stories we tell ourselves have more negative consequences than external stigma.
" ... A couple of months ago I was asked if I would be interested in being interviewed and photographed as a woman living with HIV. I thought it through and decided that I would do it as an important step in my acceptance of this disease and my moving forward in shattering the stigma that surrounds me and others living with HIV ... Right now, or before right now, I have felt isolated, alone, ashamed, stigmatized. The worst part of that is that I have stigmatized myself. I had decided that I was less than. Not worthy of a great and long life. Not worthy of health and happiness and love and success ... I can't even begin to tell you how at peace I felt when [the photographer] left. I know it will be a fleeting feeling. But just that I felt it, if only for a few hours was enough for now. I truly felt for the first time in a long time that I am very special, valuable and worthy."
(from "A Step in the Right Direction," 7/3/13, lynn2011)
There are many factors that contribute to stigma and discrimination against people living with HIV. Most of these factors reflect people's ignorance of the basic facts about HIV and the fears that they have about people living with HIV as a result. For example, myths about how HIV is spread can cause people to be afraid to hug someone with HIV or refuse to use the toilet after a person living with HIV. Since there is currently no cure for HIV and HIV can be life-threatening, people's fears can sometimes be quite strong.
"I'm writing this to share a piece of what my life was like disclosing. It hasn't been an easy task. I had to learn stigma was nothing more than ignorance of the unknown. It didn't mean I couldn't achieve my dreams or the impossible!"
(from "Why Even Share?" 12/5/12, msplusamerica2011)
Most people living with HIV become infected through sexual contact or injecting drugs. These behaviors are often ones already stigmatized in society and can come with pre-existing moral beliefs. For example, in some cultures, HIV is seen as a 'punishment' for immoral or bad behavior, even when the woman did not engage in whatever behavior she was accused of doing. In many countries, a code of silence about sexual relations combined with social acceptance of men's sexual activity outside of marriage have resulted in the infection of many women who were having sex only with their husbands. As HIV treatment advocate and educator Heidi Nass points out:
"People who get HIV aren't doing anything differently than most people they know. The only thing that separates you from all the women who've had sexual intercourse with a man or shared a needle but didn't get HIV, is that you got HIV."
(from "An Open Letter: Woman to Woman," Heidi M. Nass, The Body)
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