In my research work with children living with HIV in Kenya, I like to begin by hearing their voices. When we tackle a new problem related to children’s health here, we usually start by listening. We listen to our children and their parents and caregivers share what this problem means for them in this particular place. Their stories, their voices.
Our latest listening centers around the stigma faced by children and families living with HIV. In the 8 years I have been doing this work here, I have heard over and over how HIV-related stigma shapes families’ entire lives – from how they deal with the challenge of taking HIV medicines every day to how they arrange their child care. With one of our new projects, we are finally focusing on what this stigma really means for children here.
Today, I listened to a group of adolescents who know that they have been infected with HIV for their entire lives talk about this stigma. And they told the stories of the voices that they hear around them.
All around them are voices of stigma, of discrimination. Voices that would layer them in shame and separateness.
Listen to these voices with me. These are their exact words:
When children your age talk about HIV, what do they say?
They say that people with HIV are so thin.
They say that if you have HIV, you are going to die.
They say that if you share toilets, you will get HIV.
They say that those who have HIV have sinned.
They say that you only get HIV if you are a prostitute.
They say that those with HIV will just die.
So many of the voices around our children tell them that terrible things will happen if anyone knows that you have HIV. The voices give them a hundred reasons to hide, a hundred reasons to feel ashamed and alone.
How do other children react if they know that a child has HIV?
They tell other children.
They refuse to play with you.
They separate themselves from you.
They run away from you.
They insult you.
When they know that you have HIV, they will look down upon you. If you try to borrow anything from them, they will never give you anything.
They will chase you away so that you don’t sit next to them.
Others will tell you openly – “don’t touch me!”
They hate you.
Darling, beautiful children, we try to tell you that you are precious. How I hope that our voices at the clinic at least tell you that you can be healthy and strong, that you can have hope and a future. How I hope that you hear other voices telling you that you are deeply loved. How I hope there are other voices.
Please, world, raise your voices.