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.
Today we are celebrating International Women’s Day with a very interesting theme: ”Accelerate Action”.
Worldwide, strong women are working hard to ensure their fundamental needs and rights are being met in their communities. Accelerating action is about their fight to remove systemic barriers and inequalities that prevent them from claiming their fundamental rights. They are united in their aim for women and girls to thrive and exercise their rights without discrimination or disadvantage. And they know it is essential to work with women from marginalized communities, including indigenous people, sex workers, and transgender people.
I am extremely proud to present three (!) remarkable women from different parts of the world who all in their unique ways contribute to empowering women and girls in their communities to improve access to HIV services and fight against HIV stigma. They show us that there are so many ways we can contribute to empowering women, whether through research, journalism, awareness raising or teaching. Let’s meet our three new Heroes of Hope!
Maahi, a transwoman living with HIV from Pakistan, is the founder of the first trans-led network of People Living with HIV in Pakistan, a brilliant teacher at a transgender school and a global advocate for the rights and well-being of transgender people living with HIV.
Claudette is an indigenous woman from the Kehewin Cree Nation in Alberta, Canada. During her 30 years of living with HIV, through her work as a wisdom speaker on HIV and indigenous-focused research, she has grown into a leader in HIV action amongst indigenous women in Canada.
Harriet experienced the devastating impact of HIV and AIDS in the early 1990’s while supporting people living with HIV in Germany. Today, her lived experiences and skills as a journalist and sexologist strengthen her in her fight for the rights of sex workers.
Need I say more? All of our three icons work with so much compassion within their communities, sharing their experiences and efforts at the global stage to inspire all of us to accelerate much needed action to positively impact the lives of women and girls affected by the global HIV epidemic.
I am very glad to call them Heroes of Hope who truly contribute immensely to this year’s theme of accelerating action for women and girls. Let’s support local HIV action to continue bringing positive changes to our HIV communities!
Click on the images above to read their individual Stories or find them and other Heroes of Hope here!
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!
My lovely people, in many cities all over the world we celebrate Pride in August. Pride is an important moment for the LGBTQIA+ Community to express themselves.
Thanks to an invitation from Sensoa Belgium, I was happily part of Antwerp Pride and contribute to their campaign Is PrEP iets voor jou? (is PrEP something for you?). A key moment was the parade on the 12th of August. I found it very inspirational to join the parade and I also learned that still so many people are not aware or don’t even know about PrEP as a way to prevent someone HIV negative from getting HIV.
During Pride, Antwerp transforms into a brave space where everyone can be who they are within a respectful society. This also means having the courage to stand up and act against stigma and discrimination. Therefore, I was very proud to promote PrEP Diversity. As I pointed out, many people, especially women, with a migrant background are still overseen in stigma reduction and prevention efforts and still do not have equal access to PrEP. I am proud that I contributed to making Antwerp an even braver space by demanding PrEp diversity!
During Antwerp Pride I also celebrated many performances of local artists with so many people who truly felt safe to express themselves in this brave space. It fills me with joy to see them join Pride and be themselves because we manage to create this brave space.
Yet, let’s not forget that many cannot be who they are in their homelands. I wish a brave space would exist anywhere in the world, and not only during one week of Pride each year. A brave space should really not be an event like Christmas, where we wait the whole year to celebrate for a few days and then move on again. We should be able to express ourselves every day!
Frederick Douglass once said “If there is no struggle, there is no progress”, and we should work hard with communities, organisations and governments to promote and protect the human rights of all persons, including the LGBTQIA+ community, without stigma and discrimination.
So let us normalise brave spaces, and the easiest way is to start with yourself by creating a space in your heart to accept and respect each and everyone’s choice to be themselves every day of the year!
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 birthday month, November, had a great start by doing what I like most, giving my HIV activism a boost. Between 4-7 November I was in Istanbul for a face-to-face ‘Skills Training to Empower Patients’ (STEP-UP) and networking weekend organized by the European AIDS Treatment Group (EATG) Training Academy.
After more than a year of online training because of Covid 19, I got a chance to finally meet my fellow European and Asian HIV activists and advocates. Everyone was dying to meet and finally get to know each other more and share our experiences because in the end it is really about community voices. It was quite interesting to experience the difference between zoom meetings and ‘real’ talks together.
As we all came from different parts of Europe and Central Asia we had to speak different languages, so some were speaking English and others Russian. But in the end we all share the same goal and then language barriers can be overcome. While chatting with different people and listening to presentations, I realized that we all share what I call a “Bouquet of problems”; Stigma, discrimination and criminalization.
During the weekend I learnt so many new insights. For example, my friends from Greece and Georgia shared with us that among people using drugs, women are way more stigmatised than men. Or that in some countries mothers living with HIV are still criminalised when breastfeeding and that they are not receiving any support from the health system to obtain baby formula or do medical checks during their breastfeeding period.
Yet, all the new information led me to ask so many questions. For example, why are especially women still so vulnerable to attack and deliberate stigmatision? There are so many new developments and guidelines, for example on breastfeeding, there is U=U, etc. In 2021, women living with hiv should not be criminalised at all. I am telling you, no mother would wish to transmit HIV to her child on purpose!
It shocked me to hear that there are still 130 (!) countries where people living with HIV are injustly criminalised, and in 50 countries we can be prosecuted because they have outdated laws related to sexual, but also on spitting, biting and even breastfeeding. People, after 40 years of HIV/AIDS, instead of being stigmatised we must focus our fight on removing inequalities and to demand the right to access HIV treatment and receive good medical care.
Our training was epic, there was no taboo, we talked about many topics and received useful tools that we can use in our communities. It feels like I have known this group for such a long time as we shared so many laughs, jokes and fun. It made me wonder what more we could have achieved if we could have done all sessions face-to-face instead of via zoom. I gained so many friends, which is fantastic. These moments of togetherness bring back humanity to our lives.
By Sunday, we all went back home empowered with knowledge that we will share with our community and use to convince our decision-makers and politicians to DECRIMINALISE people living with HIV!
Thank you EATG for organising the STEP-UP training and making this such an inspiring weekend, we shall meet again my Activist Friends. Keep up the fight, we are on the winning side since we DARE to speak up about our bouquet of problems!
HIV stigmafighter 