Y+ Beauty Pageant, a first for young men and women living with HIV in Uganda, took place at the elegant Golf Course Hotel. It was organized by my group, the Uganda Network of Young [...]]]>
Y+ Beauty Pageant, a first for young men and women living with HIV in Uganda, took place at the elegant Golf Course Hotel. It was organized by my group, the Uganda Network of Young People Living with HIV & AIDS, under the slogan Beauty with Zero Discrimination,
In my country, to proudly get on stage, show your face and display your name when you are HIV positive is, believe me, a daunting task. I live with HIV and I can tell you it is hard.
The joy of life: young, beautiful, confident and living with HIV.
However, you’d never know this from the contestants’ smiling faces. Youthful, healthy and gorgeous, they walked proudly in immaculately tailored suits and stylish dresses.
Their stories were inspirational.
One contestant said: “I used to get sick as a child when I didn’t take my medication, but now you can see I take it well and am very healthy now.”
Sharifah Nalugo Kyomukama recalled when classmates at university discovered her ARV pills. She decided to disclose her HIV+ status, only to be met with a rash of discrimination. She broke down in tears as she recounted her experience: “Discrimination hurts and it is never okay.”
Fifty contestants, aged 16 to 25, rehearsed with the help of experts during two days for the talent and fashion shows, and 10 finalists were selected.
In the talent portion, they sang, danced, recited poems and monologues about what being HIV positive means to them. Many emphasized the importance of taking medication regularly and engaging in safe sex.
Sex is good
The glitzy event was attended by top leaders from Uganda’s HIV community and local celebrities who came on stage to sing, speak and advocate.
We even had commercial sponsors who were not afraid to be associated to an HIV event, which was broadcast on six TV stations and five radios.
When Uganda’s former vice-president, Dr. Speciosa Wandira-Kazibwe, walked on stage, she was a ball of fire. “You are all beautiful and handsome!” she cheered.
Wild clapping ensued when she told participants there is no shame in their sexuality.
“Sex is the most pleasurable thing you can ever have,” she said. She described her own battle promoting condoms, when churches, mother’s unions and newspapers castigated her for allegedly promoting promiscuity.
However, obstacles and criticism have never deterred this fiery woman. Waving a string of colorful condoms, she happily danced with the contestants.
Proudly positive: finalists at the Beauty with Zero Discrimination
pageant for young Ugandans living with HIV
Professor Vinand Nantulya, chairman of the Ugandan AIDS Commission, spoke angrily against the recently passed HIV Control and Prevention Act.
“Criminalizing HIV and AIDS is wrong, unacceptable and nonsensical,” he told the crowd. “We will not let them get away with it.”
The winners, Sharifah Nalugo Kyomukama, 19, and Ronald Juan Kaganda, 20, were crowned Mr. and Miss Y+ (Youth HIV Positive). They will work as ambassadors in a new HIV prevention campaign.
Sharifah, her tears forgotten, beamed as she received the award. Later, the crowd enjoyed revelry and dancing. We had a blast!
The Y+ Beauty Pageant will be back next year – a public platform where HIV+ youth in Uganda can fight stigma and discrimination and celebrate their lives.
Jacquelyne Alesi is a wife, mother, daughter, HIV activist and Programme Director at the Uganda Network of Young People Living with HIV/AIDS, an organization that since 2003 works to improve the quality of life for HIV-positive youth in Uganda.
Back then, in 2009, her CD4 count was only seven. She was very sick and had some skin infection that made her look and smell [...]]]>
Back then, in 2009, her CD4 count was only seven. She was very sick and had some skin infection that made her look and smell bad.
Her mother had lost hope for Rukiya and brought her to our association. Although I am neither a doctor nor a nurse, I could help the mother emotionally. I kept telling her to love her child despite her ill health.
Doctors put Rukiya immediately on antiretrovirals. She recovered and has been taking her daily pills conscientiously ever since, along with her mother. When she is at school, the matron reminds her to take the pills.
Drawing by Delfina.
So hard to talk about HIV
Rukiya’s story tells us a lot about couples and HIV.
The mom cleans a church pit latrine and the dad is a bricklayer. The mom says she found out she was HIV positive during antenatal care. But she did not believe the diagnosis; she was faithful to her husband and thought he was too.
Or maybe she believed it but did not dare speak. So she kept quiet about her status.
It could be that the husband knew or suspected he was HIV positive and he too kept quiet.
I totally understand why it was hard for Rukiya’s mother to accept her initial diagnosis or talk to her husband about it.
Women are usually the first ones in a couple to learn they are HIV positive, at antenatal care.
It is really hard for you, as a woman, to talk to your partner about your HIV status, and have him understand you, not blame you.
So a woman will hide her status, and this brings many problems. For example:
- Reinfection if your partner is HIV positive.
- Self stigma and denial – always blaming yourself.
- Violence, especially when a man finds out later from someone else.
- Mistrust in families, spouses blaming each other about who brought the virus into the family.
Rukiya was delivered healthily, but at age two she fell sick. At hospital, the child and her parents were tested. All were HIV positive and started antiretroviral therapy. I have stayed close to them, so close that Rukiya calls me Mummy.
The parents went on to have three more children, now aged four, two, and ten months, all born HIV negative thanks to ARVs.
I tell Rukiya that I am also HIV positive and I have a family, a job and a career helping other people with HIV, and that she, too, will have a rich and happy life. And she gives me a big tooth-gapped smile and hugs me.
I am so privileged to have in my life this child, who is not from my womb, but who calls me Mummy Jackie although I am not her real mother.
Jacquelyne Alesi is a wife, mother, daughter, HIV activist and Programme Director at the Uganda Network of Young People Living with HIV/AIDS, an organization that since 2003 works to improve the quality of life for HIV-positive youth in Uganda.
“What happened?” asked her mom.
“Abana bagaba kusomelo nti nina silimu ate ntinda bika bubbi nyo era ngenda kuffa esawa yona era negamba nze silina kuba kusomero nina kubawaka effe bulungi,” said Rukiya.
“The children say I have [...]]]>
Climbing the wall of prejudice: HIV positive children need loads of love and support to deal with their own status and with prejudice. Credit: Mercedes Sayagues
One day Rukiya came home from school crying, sobbing that she didn’t want to go there again.
“What happened?” asked her mom.
“Abana bagaba kusomelo nti nina silimu ate ntinda bika bubbi nyo era ngenda kuffa esawa yona era negamba nze silina kuba kusomero nina kubawaka effe bulungi,” said Rukiya.
“The children say I have AIDS, I look very bad and I will be dying soon and I don’t need to be at school, I should stay at home and die.”
Rukiya is five years old and was born with HIV. Her mom didn’t know they were both HIV positive until Rukiya got very sick at age two. Both mother, father and daughter have been on antiretroviral therapy ever since. They live in Kampala, Uganda.
I’m like Rukiya’s second mom, so her alarmed mother called me. I was busy at work but realized that Rukiya needed me more than my office and went to their home.
Rukiya told me what happened and she asked me to tell her the truth, just me and her.
I didn’t know what to do. First I sat with the mother, just me and her. I asked if it was Ok for Rukiya to know the truth. The mother felt the child had the right to know, like any person living with HIV. We both thought she suspected or already knew what her daily pills were for.
So I told Rukiya she is HIV-positive like me and her mom. I explained that I have lived with HIV for ten years, double her age, and I am going to live for many more because I love myself the way I am.
“Mommy Jackie,” she said. “Wana ngeda kuffa mangu nyo oba nage neganda kubera nga gwe niyye eyonyi?”
“Is it true that I am going to die soon or will I live and be like you and travel like you?”
“You will live only if you love yourself, take good care of yourself and take your medicines without missing a day,” I replied.
“Is HIV the reason why I am taking these pills?” she asked.
“Yes,” we said.
Strong girl
I write this on one page but the process took us the whole day. Then it took two weeks of counselling, with loads of support, care and love we showed Rukiya, before she managed to go back to school without fear.
She looked happy and ready to start a new life with her known HIV status.
It gives me joy that she is such a strong girl who can handle a difficult situation.
Uganda has a policy that does not allow disclosing their HIV status to a child who is under 13 years old. For children with little or no support, this may be best. I would not disclose to children who don’t have the kind of strong family support Rukiya has.
But we decided to tell her because we felt she already knew the truth. We did not want her to hurt her further with a lie.
We started taking our medicines the three of us together, so she would feel she is not alone.
Recently I asked her what she wanted to do when she grew up.
“I want to be the first woman pilot in Uganda because when mummy Jackie tells me about her travels, it makes me feel like travelling everyday and every year,” she replied.
I smiled and hugged her. She is OK. We are OK. It was the right decision to tell her she lives with HIV.
Rukiya is now seven, healthy and doing well at school.
In my next blog I will tell you how it happened that I became Rukiya’s second mum.
Jacquelyne Alesi is a wife, mother, daughter, HIV activist and Programme Director at the Uganda Network of Young People Living with HIV/AIDS, an organization that since 2003 works to improve the quality of life for HIV-positive youth in Uganda.
]]>
I was 17 years old and living in Wakiso district, 20 kms north of Kampala. My boyfriend was 24 and he was everything to me, but I was so [...]]]>
I was 17 years old and living in Wakiso district, 20 kms north of Kampala. My boyfriend was 24 and he was everything to me, but I was so wrong. With him, I got a triple whammy, three things that were very hard to live with: I lost my virginity, became pregnant and contracted HIV. That’s why I don’t like to talk about the past, because it makes me cry. My baby son died on June 3, 2005, when he was eight months old because I did not know that we were both HIV-positive.
The author, Jacquelyne Alesi, on her wedding day.
After his death, I was sick on and off. At school, I could not concentrate in class, thinking about my baby boy. I felt out of place with my fellow students. The baby’s father had dropped me when I was pregnant, and died not long afterwards.
What kept me strong were my lovely parents, who encouraged me to cry out my pain, to overcome the problems and to study hard so I could have a brighter future.
One year after my son’s death, my parents suggested an HIV test. I agreed. I thought I was OK. I got a shock. I cried. I kept reading the results and asking the counselor if those were really mine.
I was devastated. I crossed the road without looking and somehow got home, I don’t know how. My parents realized I had tested POSITIVE because I was running like crazy. The first thing my dad said was, “Don’t worry, we are here for you no matter what”.
That is what I needed to hear after my long journey of trauma.
I finished my advanced level and went to university, not without struggles, challenges and disappointments – like friends who disclosed my status without my consent.
Love knocks at my door
In 2008, I met the man I was waiting for. I was tired of being single. I needed someone to share joy and sadness. And there he was: two years older than me and studying for a degree in information technology.
We dated for over one year without having sex. I had promised myself to tell my HIV status to the love of my life before becoming intimate. When I told him, he was in denial. He couldn’t believe it. He said I was inventing it to drop him.
We went for a test together: he was HIV negative and I was HIV positive. He said the machines were lying. We took another test: same results.
He disappeared for three months.
One day he left a message on my phone: “Hello, my love, can we meet this evening?”
I feared he would say this was the end, or perhaps beat me up because I broke his heart, so I took a friend along. He said: “What I have to say is between me and you”. I told my friend to wait aside.
He said: “Am sorry, my love. I want you to be my wife, will you marry me?”
That was last thing I expected!
In 2009 we got engaged and I started ARV treatment. Alpha, my eldest son, was born HIV-negative that year.
On September 17, 2012, we were married in church in Kampala. That was a very wonderful day for us and our families. Alpha is now four years old, John is 18 months old, and we look after four HIV-positive orphan children.
I am 28 years old, openly living with HIV in Uganda, in a loving discordant relationship, with access to lifesaving ARV treatment, able to give birth to two wonderful children who are both HIV-negative as a result of prevention of mother-to-child transmission services.
However much I don’t like my past, it has helped me build a better future.
Unfortunately, not everyone has been as lucky as me in accessing treatment, because of stigma and discrimination, coercion and violation of their rights. As an activist, I help young people accept their HIV status. This is my dream: that every person living with HIV in Africa may have what I have – ARV treatment, health and love.
Jacquelyne Alesi is a wife, mother, daughter, HIV activist and Programme Director at the Uganda Network of Young People Living with HIV/AIDS, an organization that since 2003 works to improve the quality of life for HIV-positive youth in Uganda.
]]>