Today I am sharing something close to my heart: the story of my son, Rio Mutoni.
When I was diagnosed with HIV, doctors told me I couldn’t have children. But I refused to accept that. So, thanks to antiretroviral treatment, I gave birth to Rio – HIV-negative, healthy, and full of life. He became my reason to fight against this virus and my proof that love and determination can overcome stigma and fear. I raised Rio with care and he grew up to become an amazing young man.
From the age of two, Rio was obsessed with trains. It started with Thomas the Tank Engine and quickly grew into a passion for real trains. He built train tracks out of domino stones and shoes, watched train movies on YouTube, and declared, “Mama, when I grow up, I will be a train driver”. Already in primary school at the age of five, when he had to mention his dream in a school book, he asked me to write down train driver. As we use public transport a lot, whenever we would use a train he would be very happy and paying a lot of attention to every move the trains would make. On his fifth birthday he wanted to visit the train museum and he could already experience a life size train simulation. His whole life he dedicated his passion for trains. His dream never wavered.
As parents we supported him in every way: train simulators, cameras for trainspotting, trips to train museums. His knowledge amazed us. At age nine, he navigated the London Underground better than most adults. And finally, at 19, after two years of vocational training, Rio graduated in July and was hired immediately by the National Railway as a professional train driver. He started driving trains on the first of September, and on the 25th he received his formal course diploma. Of course we were there to celebrate this precious moment with him
His dream came true and we are so proud to have supported him to realise this since a young age.
To parents: learn to understand your child at an early age and support their dreams, not your expectations. Let them be who they are, not who you want them to be. Every child is born unique. Realising their happiness and dreams should be our priority.
To mothers living with HIV: never doubt your strength. You know the connection you had with your baby inside your womb, that love will continue to grow and will motivate you to support your baby. Our love is powerful. Our children are brilliant. We are proudly HIV-positive moms and we thrive.
Rio was born after my diagnosis. I am glad we have been able to do this for our son Rio, and the results certainly paid off. In return for supporting him, he helped me win my battle with HIV. And now, he’s driving trains across the Netherlands, living his dream. I couldn’t be prouder.
Rio, congratulations on realising your dream to become a train driver. You are proof that love and belief in yourself can move mountains.
Since last year’s Mandela day, which is always on the 18th of July, STORIES OF HOPE includes portraits about our dear allies of PLWH in recognition of their contribution to ending HIV and AIDS. In August 2023, Jennifer Hopelezz, a truly remarkable HIV drag activist and ally, was induced into the Heroes of Hope gallery.
Almost one year later, while eagerly anticipating the start of AIDS 2024 in Munich on 22 July, we will be looking forward with Jennifer to AIDS 2024 and give her the honour to introduce our newest Hero of Hope who happens to be Jennifer’s family!
Jennifer; when you hear AIDS 2024’s theme ‘putting people first’, what does this really mean for you?
“Well to me, it’s a little bit too obvious because of course that’s what you expect, people first before profits and organizations and businesses. But sometimes that seems to get lost and it all seems about the whole infrastructure around HIV/AIDS that has been built up over the last 40 years.”
Jennifer, from your perspective, what do you think should change to ensure that community-based organisations are empowered to apply a ‘people first’ approach to their HIV response?
“I am always surprised at how little feedback is asked of us as a community group – but also as business owner with sex-on- premise venues. We have a whole heap of experience and information that is not tapped into. We have a totally different perspective to the government organizations, and we also have a certain freedom they don’t have as we are an independent voluntary group.”
Jennifer, you are the mother superior of a large drag family in the Netherlands. To celebrate diversity in the wonderful world of drag, in 2019 you added a new drag house to your family, called Lost Bois. One of your family members is Eric the Dragking. Could you introduce Eric in a few words?
“Eric personifies what our houses stand for. Using the power of drag as a tool of activism, to use the attention you get as a drag performer to get your message across. Because you surely get much more attention when you are in drag! Sex positivity, HIV and AIDS, fighting discrimination-these are really core values of our drag houses and that is what Eric is also about! (He also happens to be one of the best looking kids I have, haha, don’t tell the others!)”
Eric, so nice to meet you and such an inspiring Story of Hope! Why did you decide to do drag and what is your link with the HIV community?
“I decided to perform drag because drag is another powerful way for me to fight stigma and discrimination, and bring change to people and communities. I am living with HIV for 20 years and I know what is like to be stigmatized or discriminated. As Eric the Dragking I can also contribute positively to reducing HIV stigma and improving PrEP awareness in the Queer community.”
Eric, how do you connect your HIV activism with your drag performances?
“I combine my HIV activism with my drag during my performance where I always make sure to be Stomping HIV stigma away. This means that on stage I will be bringing messages of hope for PLWHIV whilst also raising awareness on HIV stigma and access to health services. If together we want to end HIV and AIDS, everyone should know about access to HIV services and prevention and claim it as their right. I like being on stage with artifacts to amplify my HIV activism, it makes people curious and this is a great way to start a positive conversation on HIV.”
PrEP diversity
Jennifer, as a drag activist you are also strongly advocating for PrEP availability and access. How do you contribute to PrEP diversity and what do you think are the key priorities right now?
“We really need to open our focus from not only cis gay men but to women, transgender people and immigrants. That’s why we are so happy that Eric has joined the PrEPNu outreach team because he knows how to reach these other groups that we don’t. All our networking and all our knowledge is based around the gay scene, especially in Amsterdam. But if we are to end HIV and AIDS, then we need to step out of our bubble and reach these other groups as well.”
Jennifer Hopelezz and Eric the Dragking
So Eric, you will be joining AIDS 2024 in Munich, Germany. What will be your key message there?
“During AIDS 2024 you will find me mainly at the Global village, this is where the global HIV community will be meeting and I am hoping to see a lot of my fellow grassroot HIV allies. My main message will be to share the importance of PrEP Diversity. We should always remember that HIV does not care about gender, sexual orientation or ethnic background. PrEP is designed to prevent against HIV for everyone. I am confident that we can end new infections if we make sure to enable access to PrEP for those who need it. That is why #PrEPdiversity is very necessary.”
Eric, following Jennifer’s Story of Hope last year, you feature in this Story of Hope. How important is this for you?
“I am very grateful to be given this opportunity. In 2021, when Stories of Hope was launched, I shared that I was the first Burundian female to play the Indonongo here in Europe. Back then, Eric was not out of the closet yet. I realise that talent is like champagne, it cannot be bottled up, it has to released to be shared and enjoyed fullest. So today I am so proud to share Eric’s talent, the first Burundian and Dutch Dragking living with HIV and open about it. I hope that my HIV dragtivism will be an inspiration for PLWHIV who are still in the closet and also to serve as an example for those who think that life is over after an HIV diagnosis. I am living proof that HIV will never take away your talent!”
Are you talented and never let HIV stigma stand in your way? We are looking for talents to share their experience during World AIDS day on the 1st of December 2024.
Get in touch if you would like to share your story with the global HIV community!
Hello my lovely people. Some of us are always counting their age, forgetting to do the things that make them happy. Remember, there is no such thing as putting your life on hold, because we are all ageing, every day!
This may sound weird, but I am always looking forward to ageing. When you cherish your dreams and love your life, ageing should not be your problem. As long as you are happy with yourself! Look at Eric the dragking, never giving a damn about age at all. Who knew I would be the first Dragking to be open about thriving with HIV?
Work with us to THRIVE!
Of course, for many of us living with HIV, it is quite a journey to get to this comfortable place that we all need to live and age healthily. Knowing first-hand how difficult it is and how many barriers we need to break, I have always been very committed as an activist member of the HIV community to share my personal experiences to change my lifestyle to improve my health-related quality of life.
Yes, there are many discussions and workshops on this topic, but how many of us really work together with people living and ageing with HIV instead of for them? So being always full of ideas as an HIV activist and entrepreneur, you may remember that last year I gave a performance called five ways to THRIVE. Well, sending the message through a performance or workshop is not enough!
What if we ask the HIV community directly to share their dreams, what they do to regain trust, and to share their journeys towards staying healthy while ageing with HIV?
Today I would like to share with you that we have indeed started to engage the HIV community to co-design community tools to express our challenges, and share our dreams and ideas to age healthily!
I am so blessed to get a lot of support from friends in the worldwide HIV community to think along, THRIVE is very much alive!
Through THRIVE we, as creative members of the HIV community, want to keep developing useful concepts and share our experiences. But we cannot do this alone and we will need support from our HIV allies to work with us to THRIVE while ageing healthily with HIV.
So, are you curious how you can engage with us? Get in touch and let’s THRIVE together!
My lovely people, have I already told you how glad I am to be open about my status? I get to know more and more fabulous people in our HIV community wherever I go. And I love the way my HIV community keeps on growing. When we fight HIV stigma we need as many allies as possible.
In January this year I got in touch with a photographer from Dublin, Steven Doyle. He is not HIV positive, but he was a nurse in Romania during the height of AIDS epidemic in the 90’s where he worked with many children living with HIV and AIDS abandoned by their parents. Steven was taking care of them in hospitals and even adopted one of them, Nicu.
My HIV ally Steven
Eventually Nicu died at the age of 27. Ever since Steven’s work in Romania, he is vigorously fighting HIV stigma and discrimination through his activism and photography. His story moved me and we have so many things in common, see for example my story on HIV medication exchange for people living with HIV in Romania.
Inspired by Steven’s story I decided to join his project where he is collecting stories and portraits of people living with HIV all over the World. I consider Steven my newest HIV STIGMA family member.
So, in May Steven invited me and my husband for the photo exhibition in Dublin, Ireland. I was very excited and also curious to get to know the other HIV models. And I found that at least 3 of them are my EATG colleagues, what a small World!
In Ireland I was able to connect with new people like wonderful Gerald, who introduced me to the big HIV network in Ireland, for example HIV Ireland. One day he also showed us around in his family’s magical garden where he told us so many stories about edible and medicinal plants, what an experience! He showed us the beautiful Kildare Cathedral where I learned much about Saint Brigid of Kildare, a very important Irish Female Saint. Gerald is truly doing a lot for the HIV community in Ireland.
Enjoying the photo exhibition with Gerry
And then came the surprise invitation of Robbie and the Fabulous Drag Queen Veda Lady who are the hosts of the Poz vibe Podcast for people living with HIV, their friends, family and allies. There I also met Jordie, and my ally Steven was also part of the podcast. While all our stories are unique and inspiring, we are all connected by beating our common enemy “HIV STIGMA”. We shared many tears and laughter that afternoon. Overall, through our common experiences we realised that we are heading into the right direction and that our efforts are not in vain. Talking about HIV openly is definitely the right way to normalise HIV.
Veda Lady and Robbie
Yet, I would like to say one word of caution as, to me, the migrant HIV community is still not vocal enough, whether in Ireland or my own country the Netherlands. So I do hope my and other stories will keep on inspiring them to join us.
I would like to thank Steven for introducing me to my allies in Ireland and helping the HIV community to share our stories through our beautiful faces. Also hugs and kisses to Veda Lady and Robbie Lawlor for working so hard to make sure the positive voices of people living with HIV are being heard by the World. And Jordi, thank you so much for inspiring the young and queer world to living a fabulous positive life. Last but not least, I am thanking generous Gerald for his contribution to HIV Stigmafighter’s work in Burundi!
Let us keep up the good work, the world needs more people like us. Feel welcome to join our battle because HIV STIGMA MUST FALL!
HIV stigmafighter 