April 11, 2014 – Openly HIV Positive Married Nigerian Woman Speaks “Why I Disclosed My HIV Status”
Nigeria’s 1st openly positive woman and the founder of PATA, Rolake Odetoyinbo has spoken up on her struggles and hope as an HIV carrier.
‘Rolake studied Dramatic Arts at Obafemi Awolowo University, Ile-Ife, specialising in radio, film and TV production. She is an activist, advocate, writer, trainer, public speaker, and television and radio producer. She has at least fifteen years of experience in fighting for rights of the marginalised and the vulnerable.
A graduate of the African American HIV University in Los Angeles, she is an openly positive lady with a broad understanding of public health. She works on issues of HIV/AIDS, disabilities, sexual, reproductive and women’s health.
She is a member of the Strategic and Technical Committee for WHO HIV Department, the Board Chairperson for the International Treatment Preparedness Coalition (ITPC), Chair of the Global Fund’s implementing Bloc and past Board Member, Global Fund to fight AIDS, Tuberculosis and Malaria. She was recently honoured as one of the top 100 women globally delivering on women and girls. She holds multiple awards in Nigeria, Africa and globally. Contact our Executive Director.
BESIDES breast cancer, HIV/AIDS remains one of the most serious health issues facing women all over the world. In an environment where polygamy and female genital mutilation is practised, their vulnerability is further compounded.
Rolake Odetoyinbo Nwagwu got the “death sentence” as she chose to call it, a few years ago when she was diagnosed as HIV positive. Then everything about her fell apart. A trip to Barcelona a few years ago changed her life for good. Now an activist and conference speaker, the smiley member of Global Network of People with AIDS (GNP+) just got back from Thailand where she attended the 15th edition of the World Conference on HIV/AIDS. In this interview, you’d find a must-read Rolake, the columnist, sharing her experience at the conference and what it is like living with HIV.
WHAT was the Thai conference like and what experience did you take out from there: For me, it was a good experience. I particularly enjoyed it because I felt that I was giving something back to the conference. The very first HIV/AIDS conference I attended was in Barcelona 2002 and then, I didn’t know much about HIV. In fact, I wasn’t open about my status. I went to Barcelona with the knowledge that HIV was a death sentence. I felt that while I was alive, let me just get the best out of life.
The conference for me wasn’t so exciting. It was the people I met that made the world of difference. I met people who had lived with HIV for 20 years and couldn’t tell they had HIV. So Barcelona challenged my mentality. It also helped me see HIV/AIDS in a different light. I saw activists who were openly challenging the gross discrimination as regards HIV/AIDS, challenging pharmaceutical companies who were more concerned with profit than saving human lives.
Challenge and zeal
Two months after Barcelona was when I got the challenge and zeal to take back my life and drop off things that were so unrewarding, walk out of relationships that were unprofitable and talk openly about HIV. I was tired of the silence because it was driving me crazy. I wanted more from life. I was tired of carrying this cross of shame and fear around.
So, going to Thailand for the 15th HIV/AIDS conference was an experience. I found it hard to believe that just two years ago, I had gone for the same conference as a novice. But here I was in Thailand, giving back to that conference that helped change my life.
What were some of the issues raised at the conference: Access to treatment was the number one issue. When we were hearing about AIDS 10 years ago, the picture was all gloom and doom. We were hearing of people dying in the UK and America. We don’t hear that anymore. Is it that they’ve eradicated HIV/AIDS from that part of the world? No, they have access to treatment and HIV has stopped being a death sentence. It has become like high blood pressure which has no cure but can be managed with medication. So for me, the most important issue is for HIV/AIDS to stop being a death sentence. We can live with HIV.
What was the African position at the conference, bearing in mind that we have certain socio- cultural beliefs that impede progress: The ABC of prevention has failed the African. A-abstinence. How many of us who are married or in steady relationships can abstain? Majority of the women who are getting infected in Africa are not homosexuals or sex hawkers. They are women who have steady partners. B- be faithful. My being faithful is an assumption. I can only speak for myself. I cannot speak for my partner. So A-abstinence has failed me as a married African woman, B-be faithful has failed me because I can only speak for myself, where my partner is concerned, I’m only assuming. C-condoms.
Tell me, how do you begin to negotiate condom with your husband knowing that you are not the only woman in his life: For you and I as women, if you know your husband is unfaithful to you, the only thing you’ll do is to cry and he’ll beg you if he’s a good man and promise you it won’t happen again. Do you know what will happen? He will simply change to another girl. The truth is that with HIV, if your partner or husband is fooling around, it’s your life that man is fooling around with. And until we begin to see infidelity as a matter of life and death, we won’t take HIV/AIDS seriously.
What should women do: What they should learn to do is to learn to negotiate safer sex. I find it amazing when women say, “I can’t get my husband to wear a condom”. But you can get that man to bring out money when you need to buy clothes. It’s just that you are convinced and passionate about needing money for shoes and clothes. So even if he’s the stingiest man, you know how to sweet-talk him into getting what you want but when it comes to that man helping you to protect your very life, you say he doesn’t like to do it. There’s always a nice way of putting things across.
Would any African woman want to jeopardize her marriage for anything: Yes, women like their marriages but which is more important? Your life or your marriage? Unfortunately for us as women, we have put everything ahead of our own lives and well being – the man you marry is more important than your very life, your children and bearing Mrs. So, even if you see death staring you in the eye, just because you want to be Mrs somebody, you take it. And it’s unfortunate because it’s the way we were brought up as women. And even with HIV/AIDS, women are bearing the brunt of it as primary care givers.
The burden of HIV is so great on women. So if ABC has failed us, let’s go to DEF. D-for younger women to delay their sexual debut. Whether you have sex when you are 16 or when you are 36, sex is sex. The most important thing is who are you doing this thing with? There’s no different pleasure that comes with sex. Pre- or extra-marital sex. Sex basically is a physical thing. What is different is your emotional and spiritual commitment to that act. There’s so much pressure out there.
People want to have sex. And the man says, ‘you can’t be a dog in a manger; if you are not going to give me, somebody else will,’ and because you want to hold on to this man, you have sex with him.
But there is also the issue of polygamy not helping matters in our society: There are cultural issues and I’m weary of joining the bandwagon to say do away with cultural practice. Instead, let’s look at how we can do things in a safer way. Polygamy on its own is not bad. It’s what it breeds. The danger in it for women. If you are married to four women, how do you satisfy them? You might have one or two who would go out and graze and so you are sleeping with every man sleeping with your wife. And the hordes of women those men have. Sex is not a taboo. It is beautiful.
There’s no higher physical pleasure you can attain. You can’t get the kind of pleasure you get from sex from eating or from football. That shows its a good thing but how do we make it safer? So when it comes to polygamy, we all have to sit down and talk and negotiate. So we must re-appraise our values and that is the thing with HIV/AIDS. It’s challenging everything we’ve believed in. It’s turning around our mentality.
Thailand is known as a hot spot for sex, how come the HIV/AIDS situation there is so low: There, sex trade is legal and sex hawkers are encouraged to use condoms. As a man, you can’t go to a sex hawker without condom. It’s unlike here if one girl says you must use a condom, you go and find 50 others who don’t want condom.
The people there affirmed condoms unlike here where we are still debating whether it is a mortal sin or not. It’s not a religious issue. It’s a matter of if you are having sex, you must protect yourself. I believe as a Christian, simply save that life before you save a soul. Before you begin to preach at me, help me to stay alive then we can begin to talk about condoms. But if I’m dead, you can’t preach to a dead person. That’s why in a place like Thailand, even with the hot sex, the infection rate isn’t like we have here.
What is it like living with HIV: It has been an up and down journey for me. In the earlier stage, I was devastated. My greatest fear was fear itself. I was afraid of the stigma and of the shame. But once I got information about HIV/AIDS, I realized that this is nothing but a virus. I haven‘t done anything to be ashamed of. Okay, I had sex so what? Are we not all having sex? Did I have my sex legally or illegally, that’s beside the point. How you got infected is not the issue. I think the greatest problem we have living with HIV is, getting people to talk about it.
The stigma and discrimination makes it difficult for people to cope with the virus. I’ve gone through the cycle and I‘m alive. HIV like any other problem, for me, is a stepping stone onto greater things. I keep telling people that my healing is settled. While I‘m waiting for the manifestation of it, what am I going to do with HIV? Am I going to serve my generation with this or am I going to wallow in pity and shame and allow HIV kill me? No.
HIV has taken me to places I never imagine I‘d ever get to. In Barcelona, I was in the same room with Bill Clinton and Nelson Mandela and I was weeping like a fool. I couldn’t believe I‘ll see these people. What brought me there? HIV. I‘ve met heads of state and heads of parastatals. Believe me, when you step out, God steps out with you.
Just let go and watch God catch you. There really is nothing to fear. If you decide HIV is a problem, people will take it as a problem. I chose to disclose my HIV status. It wasn’t easy initially; there’s a price to pay but you must decide the most important thing in your life.
At the point where you were struggling to come out with your status, what did you look like: I felt ugly, I felt battered, I felt ashamed and it radiated outside. Everybody tells me now that I look so beautiful. It‘s because of the inside, I have so much peace, so much joy. So many things are happening in my life and its radiating on the outside. I‘ve never been such a make-up person, I‘ve never been a weave-on person.
If anything, I don‘t go to the salon anymore because of my low cut, but I look more beautiful than I looked then. If you look beautiful inside, you‘ll look beautiful outside and believe me then, I felt ugly inside I dreamt ugly. Right now, I feel like I‘m Miss World. These days, I like to dress to look the part. When I‘m attending international conferences, I tie the gele and really look like Iya Oge. I don‘t want to go out and look like HIV and that‘s it.
[Source: Impacts Aids UK]