Hesperian Health Guides
Help families fight stigma and discriminaton
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Families affected by HIV are often hurt by discrimination and unkindness.
- Caregivers and children are too often teased, bullied, avoided, or gossiped about.
- Children may be refused opportunities to play with other children, to attend school, or to join clubs or sports teams.
- Orphans living with extended family may be given more work or less food than other children, or may be kept separate from the rest of the family.
- Orphans may be taken in out of obligation but strongly resented, neglected, exploited, or abused.
Trying to reduce stigma is everyone’s responsibility. Children living with HIV cannot change these problems by themselves. They need adults, including their families, teachers, and community and religious leaders, to protect them and set better examples. Stigma can also affect families with HIV by isolating them in the community, causing problems with jobs or income, or denying them opportunities that others receive. This affects their children too.
It is our responsibility to speak out against all these kinds of stigma, to stand up for ourselves and each other, and for children affected by HIV, to accept people with HIV into our lives, businesses, and places of worship, and to help all children be treated kindly and fairly.
Dealing with prejudice and discrimination is frustrating, upsetting, and hurtful. It can make you angry and down-hearted. If community members are afraid to be with people affected by HIV, try to remember that this comes from their fear and misunderstandings. Explain this to them and to your children.
Knowing the facts about how HIV does and does not spread (see Chapter 1) can give you strength and help you educate others. Work with others to confront and educate your community. Do not accept being treated badly.
One of the most powerful ways to break the stigma of HIV is to show how all kinds of people are affected by HIV and what HIV means for them. This might include sharing your own story about HIV by telling people in a public way that you have HIV, and what it is like to live with HIV or to raise children with HIV. This may not be easy, but it is very important.
Because people with HIV are often rejected, many keep their HIV a secret. Speaking out about your HIV can help you and other people with HIV feel less alone. When people who do not have HIV hear your story, they may learn to be more compassionate. They may be inspired by your bravery. This builds solidarity between people with HIV and those without it.
You may decide to share your story at a community event or by writing to a newspaper, talking on the radio, or speaking at your church. You may share your story at the same time that others do.
Deciding to share your story publicly is a big decision. Talk with trusted friends, family, or an HIV counselor about how it could affect you and your family. Sometimes people wait to share their story until after they have been living positively for awhile and can share that part of the story. Others feel more comfortable speaking outside their community, but avoid discussing their HIV — and facing discrimination — at home. Only you will know if, when, how, and with whom you are ready to share your story.
When I was 15, I had a relationship with an older man in my town. He gave me a cell phone, money for food, and paid my school fees. I kept him company and had sex with him when he wanted. When I was 16, I discovered I was pregnant. I went to the clinic and they told me I had HIV. They also told me that I could help keep my baby well by starting on medicines right away. I thought about my cousin with HIV who tried to hide it. When she got pregnant she never went to the clinic and never took medicine. Her baby is always sick, and I think maybe that baby has HIV too. So I decided to take the medicine and keep going to the clinic.
Now my baby is 8 months old, and still HIV negative. It was hard to face my HIV but this baby has made it worth it! I want to help other mothers learn how to protect their babies.
One Sunday, I stayed after church to speak with my pastor. I have known him since I was a child and I trust him completely. I told him my story and said I wanted to share it with the whole congregation, to help them know more about HIV and be less afraid.
They told me that they too both tested positive for HIV but had not told anyone but each other. Hearing my story made them feel stronger and hopeful. I was so happy.
Walking home, I was thinking about the service when a car drove by. A boy yelled out the window that I should die of AIDS and threw some garbage at me. I was shocked, afraid, and hurt. I cried a little when I got home. But I told myself that even if some people are unkind and do not understand HIV, I will keep speaking out so more people will learn what it takes to stay healthy.
Reducing the stigma of HIV helps all of us
Anyone can become infected with HIV, and stigma against people with HIV helps HIV spread more easily. Stigma about HIV causes people to:
- avoid talking about HIV with their sexual partners.
- wait until they are very ill to be tested for HIV.
- hide their HIV status.
- avoid taking ART medicines, or miss doses, for fear that someone might see them.
All of this spreads HIV.
There is no good reason to avoid people with HIV — HIV does not spread through casual contact. When we treat people with an illness like HIV (or those with cancer or disabilities) as though they are damaged, contagious, dangerous, or wicked, we are acting as though they are not people just like us. But HIV can happen to anyone! And if it does happen to you, you will be deserving of respect and kindness.