We'll be featuring one person's story each month, a way of giving a voice to people who have a story to tell. We'll even be putting together a photo gallery with photos of how the film is developed and photos of others working with the book and film. If you'd like to be featured here, please complete the Questionnaire and return it to us. You can get the Questionnaire HERE.
Joyce Wangui from Kenya
“We were not supposed to discuss HIV in public!”
“I first felt very nervous. I didn’t know what to expect from the conversation with a HIV positive person.” Says Joyce Wangui, a 30 year old from Nairobi, Kenya. “I didn’t know whether to blame them for contracting the disease or to support them. I didn’t know if my conversation with them would be fruitful. Later on, we engaged in numerous conversations that made me comfortable.”
Joyce talks about when she learned about HIV and AIDS by saying, “I first learnt about the existence of HIV/AIDS in the 90’s while still in secondary school. Our teachers talked about it although it was not taught in our school syllabus. In 1997, one of my first cousins contracted the virus and later succumbed. It was during her sickness that I learnt more about HIV/AIDS. As it were, stigma and discrimination was at its peak then. My cousin became so sick and was bed ridden most of the time. We were afraid of direct contact with her because we feared contracting the disease. The myth surrounding HIV that time was so strong and we could only think of death. I remember us talking in hushed tones amongst ourselves.”
“Though we visited her everyday in hospital,” Joyce continues her story about her cousin, “we could not hide our wary and we treated her differently. Worse still, some viewed her as a promiscuous woman who had slept her way to contract the scourge. How wrong were we then. At that time, my education on HIV was very minimal. No one, even my parents, taught us the nitty-gritty details of the pandemic. All they taught us was that we should avoid sex at all costs and that HIV was a death sentence.”
When asked when she had her first conversation about HIV with someone she stated, “The first time I had a conversation with a HIV positive person was in 2004. I was in Zambia on official duty and was staying with some local friends. One Mwelwa Chibuye now aged 27, the second born in that family disclosed her HIV status to me. Mwelwa revealed to me that she had contracted the virus in 2002 but was not sure how, as she was very faithful to her boyfriend. At first I could not believe that she was positive. She looked so healthy and full of life. The only times I was reminded of her status was when she swallowed her ARV drugs. Mwelwa is involved in many anti-AIDS campaigns including one support group that advocates for the rights of HIV positive people in Zambia.”
Joyce being inspired by Mwelwa and she commented, “She is a beacon of hope to many young Zambians as she vividly lives positively with her status. She leads a normal life and is very supportive of her family. She has been featured in the local press numerous times talking to Zambians on how one can live positively with the disease.”
“The conversation above was very difficult for me. At first I was in complete denial that a healthy looking lady like Mwelwa could be sick. It was difficult to comprehend the magnitude of her sickness, as she always looked healthy and active. I also had difficulties asking her questions about her status, as I didn’t want to be mistaken.” Asking questions about HIV should be something everyone is comfortable with as it is the only way we can learn about the disease, however, some, such as Joyce comments, have trouble talking about it. Hopefully in time everyone will be comfortable to talk about HIV openly and able to share their stories about HIV. Joyce states, “For the record, I have previously interacted with another HIV positive person and our conversation did not end well. The person thought I was mocking him by asking too many questions.”
It isn’t easy for people to have “The Conversation” about HIV due to social stigmas, fears, or religious dogmas. However, being educated about HIV helps overcome such things. Joyce now says, “Now i feel comfortable with the conversation because I have learnt so much about the disease. I feel more involved because as a journalist, I am able to compile reports pertaining to HIV with ease.”
If the world could talk about HIV openly in casual conversations then perhaps everyone could become part of the solution to stopping the spread of HIV. Accepting people with HIV without judgment or discrimination allows for them to be able to share their stories, so when Joyce was asked how HIV negative people could make it easier for HIV positive people to have “The Conversation” she provided the following advice, “We can help HIV positive people engage in more and more conversations by integrating them in the conversation groups. Most of these people have a lot to tell but lack means and channels of spreading the word. First, we need to accept them in our societies by showering them with love. For those who have easy access to the Internet, we can help by showing them how to post their information online. For those with no Internet access, we can help them organize themselves in small discussion groups where they can present their discussions and observations.”
Overcoming our upbringing should it be strict, religious, or negative helps us all live stronger more positive lives. Some of us were blessed with a positive upbringing and supportive parents, others were not however, no matter how we were reared we can learn to be open to having conversations about HIV. Joyce’s upbringing “was modest. I was brought up in a small family of 6 with my father, mother, and four of us children (all girls). My father entrenched very strict morals on us. We were brought up in a strict Christian (Catholic) family where certain things were not allowed. My father would not allow us interaction with boys, let alone play with them in the neighborhood. My mother was liberal and was rather lenient with us although she could also not condone some behavior.”
“As a child, my upbringing was simple. I was very playful and social and got along well with my sisters and friends. As a teenager, I started discovering the real meaning of growing up and what is expected of a teen. My parents took me through the entire process of growing up. My mother told me to accept the changes in my body, as they were part of growing up. It is during this time that I freely interacted with the opposite sex. I had a mild relationship with a boy my age (16) but it was not intimate - nothing sexual. As an adult, I feel that I have leapfrogged the challenges associated with growing up. I have encountered a myriad of things, both positive and negative and they have helped shape my life. I am in a distant relationship.”
Joyce’s last comment is advice to help people begin to talk openly, “I would advise others to engage more in HIV issues in different capacities. For the HIV positive persons, I advise them to seek more discussions with like-minded persons and also those who are HIV negative. I believe that the more people engage in such conversations, the more they are enlightened about the disease and its preventative measures then we can all talk openly about HIV and stop it’s spread.”