Today we are celebrating World AIDS day. Being part of the HIV community I try to contribute in as many ways as possible to fight HIV stigma and discrimination. So as HIV Stigmafighter you can see me connecting and speaking up digitally and physically, globally and locally.
This year’s theme is ‘Let Communities Lead’. As regular readers know, in previous blogs I have been pointing out how important it is to be part of thriving local communities and making sure that our achievements are shared and celebrated at the global level as well to continue inspiring eachother in our fight against HIV stigma and discrimination.
I am very proud of my close connection to the Irish HIV community. My first contribution as HIV Stigmafighter to the Irish community was last year when I was part of a photo exhibition on people living with HIV, organised by Steven Doyle, joined Robbie Lawlor’s and Lady Veda’s Pozvibe podcast, and attended the HIV Ireland conference.
Fun at the Pozvibe podcast with Robbie & Veda
Ireland here I come (Photo: Sil-Hong Won)
Today I am proudly joining the Irish community as Eric the dragking ‘a colourful black ray, stomping stigma away’ at the famous The George nightclub in Dublin! Being part of this amazing entourage already earned me the title of Irish talent.
On stage I am excited to join artist and activist Luis Noguera which is a very special moment as Luis is also our newest Hero of Hope on our Stories of Hope platform. Please read Luis’ touching story of overcoming HIV stigma and shame!
Luis Noguera (Photo: @ciarangildea)
To me these past two year of working with the Irish HIV community to fight HIV stigma in so many creative ways is a very good example of how local HIV communities should lead our global drive to fight HIV stigma. We need our partners to seriously listen to us to make sure that addressing our challenges, ideas and solutions are made core in global and local HIV action.
Have you ever had a dilemma where you had to choose between what is best for you as a person or for us a HIV community? Last week I had to make such a choice. While getting ready for the 19th European AIDS Clinicians Society (EACS) between 18-21 october in Warsaw, Poland, on the 13th of October my sister died in Gihanga, Burundi.
So, I was torn between dealing with grief and organising the funeral of my sister and representing the HIV community. That was such a hard choice. Deep down, I knew my sister would have loved me to carry on doing what is my passion in life, representing and speaking out on behalf of the HIV community. So, with a broken heart I made my way to Warsaw to meet up with my dear HIV community and our partners.
I realised that we as a HIV community are able to contribute to fighting HIV stigma in so many different ways. Whenever we can we should be…
Speaking out
The 17th of October was an exciting day for me to speak out as HIV stigmafighter at the Stigma and Discrimination Forum which was organised a day before EACS. It was a great moment to point out the persisting stigma in the healthcare system. Thank you Virology Education for giving the HIV community an opportunity to speak out.
Group photo of forum participants and organisers. Photo credit: Krystian Lipiec
Debating
The next day I was a penalist in the WAVE (Women against Viruses Europe) workshop “I am every woman“ where I was representing migrant women living with HIV. I believe that powerful migrant women, open about their status, are key to briding the gaps between the healthcare system and migrant women living with HIV. How else will we improve access to PrEP? Thank you WAVE, for giving migrant women a chance to share their stories and insights.
Debating at the WAVE workshop
Sharing
On the 19th I shared my HIV jounery as a motivational speaker in the ‘community corner’ organized by European AIDS Treatment Group (EATG). I am so glad to see these dedicated spaces where the HIV community can interact with our partners. These are always the most vibrant spaces of any conference!
EACS Community Corner. Photo credit: Steven Doyle
Coaching
My week in Warsaw ended on a very high note! Together with AFEW International, Positive Women and Fundacija HelpNowHub I organised a positive lunch for Ukrainian women living with HIV in Poland. This was a great moment to work together on our dreamtrees and share and discuss our futures of living with HIV. I was truly touched by the resilience of the women I met, it was a very memorable Sunday!
You may have noticed that lately I have been priviliged to engage at different events, such as Fast-Track Cities, Virology Education’s Forum on Stigma and dicrimination and EACS 2023. I am noticing a very positive trend: More and more of our partners see the HIV community as empowered citizens in our global fight against HIV. If together we keep on making sure that our voices are being heard around issues such as PrEP diversity, fighting HIV stigma, growing up positively with HIV, we can bring real change to the lives of people living with HIV.
At EACS 2023 I was able to witness the great work the HIV community continues doing. Together with our partners, we can make the transformation of their work into our HIV community. Without the HIV community there will be no science.
Keep empowering our HIV community and be inspired by us for great positive outcomes!
My lovely people, these past few days I have been very proactive and this is really boosting my confidence and energy as well.
Last weekend I was invited to give a THRIVE workshop during the 4th National HIV positive Day, an initiative by Utopia_BXL, which aims to bring together the Belgian HIV community and partners in Brussels, Belgium. This was a great opportunity to share THRIVE with the HIV community as a valuable contribution to living and ageing healthily with HIV.
The THRIVE workshop was scheduled in the afternoon after a morning mostly filled with presentations and discussion about quality of life, challenges of the migrant community in Belgium, etc. Following these, THRIVE is perfect as it is engaging and fun. In a THRIVE workshop there is no time for boring powerpoints or keynote speakers. No, THRIVE is all about being lively, excited and energetic. In other words about being vivacious!
THRIVE started by exploring the dreams and aspiration of the HIV community and our allies. This was the first time ever to use the unique dreamtrees co-designed with our thrivers. And participants were really passionate about making their own dreamtrees and eager to share their pieces of art. Aren’t they lovely?
What is so good about the dreamtree is that by sharing their future, the participants get very practical hints and tips from others on small steps they could take now. And also on how to remain patient and focused on achieving their bigger dreams.
The favourite game for many participants was our brand new addition, the Tower of Trust! They really loved the feature built into the game where you can ask questions that have been bothering them and that they would never even ask to their own family, friends, or doctor…
This was their chance to pose them by hiding them in the Tower of Trust. So, with all these questions hidden in the Tower, no one will know who posed it.
Then, when any question is drawn, we would discuss together without any judgement. Participants really loved this game because they have so much freedom to express themselves anonymously and then have lively discussions about issues that are bothering the HIV community. Many wished we would have more time to play it!
Example of a tower of trust question: “Why am I the only person in my entire family living with HIV?”
The final three steps (Spark, Grow and THRIVE) we celebrated being part of the HIV community. I ‘sparked’ the party with a poem called ‘It is my time to fight HIV stigma’. And yes, it was my debut to cite it in French! We then learned taking some baby steps towards living positively, Africa style, and finished the workshop with a positive dance, energized by some sweeping Africans songs.
What a workshop! I understood it was very much appreciated by the participants and some requested if we could do it again in future. It gave me immense joy to see that my vision to live and age healthily with HIV can be put into action by the HIV community itself.
I am so proud that THRIVE can be a part of creating a vivacious 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!
The burden of the hiv epidemic has never only been carried by the nearly 85 million people infected by HIV since the beginning of the epidemic. The pain, loss and grief of dealing with and our fight against the HIV epidemic is shared by so many more; Orphans of parents that passed away who are discriminated, family members whose relations are strained, caregivers of people living with HIV, activists campaigning for PrEP access, and so on…
Two years after the launch of Stories of Hope on Mandela day 18th of July 2021, we would like to pay honour to these caregivers and the millions of people affected by HIV.
Nelson Mandela once said ‘If we are to accomplish anything in this world it will in equal measure be due to the work and achievement of others’. Therefore, let us remember their struggle and celebrate their contributions as well in our fight against the HIV epidemic and on-going stigma and discrimination.
In honour of the wise words of Nelson Mandela, as of now we will also bring their inspiring stories to the Stories of Hope platform. Because in the end, they are the biggest allies of people living with HIV and their stories are equally important to be recorded and told.
So, we are extremely proud to introduce Daria, our very first Hero of Hope who is not living with HIV herself. According to Daria, “what matters is that you can help others” to claim access to health services and create a HIV stigma free society.
We hope there will be many more people like Daria to join our growing community of Heroes of Hope. What connects us all is to realise a world where people living with HIV are healthy citizens free from stigma.
March is always exciting for us women because is the one day in a year where women are given more attention because of International Women’s Day which is always celebrated on 8 March.
This year’s focus is on achieving gender equality and empowerment of women and girls in the digital age. So, time for me to reflect how I am contributing to empowering women and girls in an ever more digitalised world!
For me, digital access is literally a life saver and favourite pastime! I use it in so many ways; As an HIV peer counselor to chat with women all over the world, to give online workshops, spread HIV awareness messages, spread talents of Heroes of hope, and so forth…
This week, I decided to use the power of whatsapp to invite women from differents nationalities to celebrate International women’s day. Many liked the idea and decided to come to my place where we shared a lot of stories, laughed and cried together. This made me realize that it does not matter where we come from, women issues in every culture are the same. Countries represented were Burundi, Tanzania, the Netherlands and Poland. My neighbour came with her grand daughter and they sang Dutch songs, and we were all touched by the message within it and became emotional. African music brought us back to the dancing energy and happiness of our togetherness.
Celebrating International Women’s Day on 8 March 2023
It is important to stay connected no matter how our busy life is, because being together sparks inspiration to share our experiences, knowledge and new ideas to improve our life cycle. That is OUR POWER to supercharge an equitable future!
But that was a small group of women and there is still so much to do! I want to reach more women and share this message with them: “Women all over the World, whether you have HIV or not, you are strong, you are good enough, and you are the boss!” I am glad the HIV Podcast shared my story as one of the Women who inspired them. The podcast that can be listened to in 167 countries, so spread the word!
Ending a week full of events around gender equity, on 11 March I joined an event organised for Burundian women living in The Netherlands to celebrate “Abakenyezi Turashoboye” (Women are able). Again, thanks to ‘digital power’ we were able to put things together very easily! We all met at the Burundian Embassy in the Hague.
Power women at the Burundian Embassy in the Hague
Our Burundian Ambassador’s, his excellence Gamariel Ndayishimiye, speech focused on encouraging women to be united and support each other in the Netherlands whilst staying connected to our motherland. In Burundi, unfortunately women still face gender and sexual violence and even whilst being far we can still support women and girls back home. He also thanked all women who are already doing great work in Burundi and proposed to do even more through a committee to organize a fund raiser to help women and girls in Burundi.
I was honored to be selected to be part of this committee, which is another opportunity for me to do more for women and girls living with HIV in Burundi. Really, we cannot make progress in our country, whether digitally or otherwise, when we leave women and girls behind. Change must begin now! Once the serious part was over, I was glad to dance among my fellow Burundian women while enjoying our home-made food and drinks. What an eventful week!
So, while here in the Netherlands obviously digital services and tech play a huge role in achieving gender equity and women and girl empowerment, please let us not forget that in many parts of the world we must continue our fight to close the huge gap in digital access and skills for women and girls, and create digital services and tech that truly meet their needs!
My lovely people, today I want to share my opinion on PrEP( Pre Exposure Prophylaxis). I know that PrEP is a pill that prevents a person from getting HIV infection. PrEP is scientificaly proven to be effective for women.
How are we doing in the Netherlands when it comes to PrEP? Are we being inclusive? Recently I wrote something on instagram about PrEP for women, and after that a woman with a migrant background appoached me and said ”I am not a sexworker, but I like to enjoy having sex with men but I am afraid of getting HIV because we don’t always use condoms. I was denied PrEP and the medical person told me that I don’t fit the criteria of the risk group“.
Since when the HIV virus has criteria? It seems to me that the HIV virus wins all the trophies when it comes to diversity! HIV does not care about gender, sexual orientation or ethnic background. So if PrEP is designed to prevent against HIV, then women should have equitable access to PrEP. Women have a right to protect themselves against HIV just like others that are now able to access PrEP right now!
How can we dream of ending HIV and AIDS with proven solutions by 2030 when women, especially those with a migrant background, are still ignored in Prevention programs? Should we not focus on making good our promises to end HIV/ AIDS by 2030 and urgently include women in PrEP programmes right now?!
Migrants, thanks to Aidsmap I recently read an insightful article on why migrant women of African origin are not being targeted by health professionals in PreP programmes whilst they represent over a third of new HIV diagnoses in Belgium in 2020. Cultural differences? Lack of knowledge? Not being ready?
How can health professionals use such discriminatory language? If you generalize a problem and consider cultural diversity an obstacle instead of embracing it, then there is no way we will get rid of HIV and AIDS by 2030!
We must acknowledge that PrEP for all is a powerful pathway towards an HIV and AIDS free World. Instead of sticking our heads in the sand pretending that getting to zero new HIV infections is possible whilst still excluding people with a migrant background, let us bring proven solutions such as PreP to the people that need it most!
Celebrating diversity and ensuring access to PrEP for migrant communities belong together. In a world where our migrant community is growing, with every day new arrivals from many parts of Africa and Asia and places such as Ukraine, we must make a priority to include them in HIV prevention.
Please listen to the needs of migrant women and make sure to prioritize them, so they will be part of the winning team in our fight to end HIV and AIDS.
My lovely people , January is my favourite month. Not only because it is the beginning of a New year where we can start afresh, we also still have the whole year ahead to work on whatever we set our mind to.
We definitely started afresh as on the 4th January we celebrated our 20th Anniversary in a very special way. It became a great day full of many surprises. Remember, I was back from Burundi where I had been working really hard for 3 months on various great projects. So of course, I made sure to be back on time in the Netherlands to be with my husband on our 20th anniversary.
He is such a romantic man, as he had planned some wonderful surprises for our special day. He took me to our favourite town, Rotterdam, where we stayed in an amazing hotel with a room with our own private jacuzzi and sauna! Then we went to a special place, a huge red heart along a canal in Rotterdam, where love couples lock in their commitment to each other. So on our wedding day (04/01/2023) we locked in our 20years and committed to staying strong for another 20 years.
And some of you may remember that it is only two years ago when I started to work hard on a Healthy New Me and that my goal was to wear my wedding dress on our 20th wedding anniversary? To accomplish this I started to walk at least 10 km every day. Well, I am so proud to share with you that I reached my goal! The dress fit me perfectly. I am calling this my Golden goal!
So, what is my next big motivation? Still this month I was invited by Positive Now and HIV Ireland to the 4th National HIV Conference in Dublin, Ireland. The theme was “The Pillars of Wellbeing” and the first speaker was Prof. Paddy Mallon to update us on key topics related to HIV in 2023 and explain where we are and what we need to know. He explained about the HIV lifecycle and presented an update on injectable HIV medication. In the Netherlands we are a bit advanced on this topic as we already have people using this, so I could share some of the experiences from our community with the Irish HIV community. To the Irish participants he asked for more people to participate in clinical trials.
The second part of conference was focused on Wellbeing. This involved topics such as how to improve our wellbeing, how do mindfulness and meditation, how to break a bad habit and apply a new habit. My favourite exercise was the ‘domino effect’ where we learned how by starting to change something small you will be able to end up reaching your bigger target. We were also asked to write down our goals for 2023.
So after a successful 2022 where more a ‘ healthy new me’ resulted in more fitness, weight control and even less medication intake (you see, A small domino can really knock over a bigger one!), what is my golden goal for 2023 and beyond? Positive Living!
I really want to keep my healthy new me lifestyle, and also to fiercely engage on HIV activism as a performer.
I would like to thank PositiveNow and HIV Ireland and every person I managed to chat with in Ireland. Thanks to joining conferences and networks like this I am motivated to continue to be healthy and in Love for the next 20years, and by the time I will be 66 years I want my wedding dress to fit me again!
I am so excited! Isn’t this what I should call Positive Living?
My lovely people, a lot of good things have happened these past days in Gihanga!
To celebrate World Aids Day 2022, Inyambo Stars together with RBP+ (an association of People living with HIV) organized the “Stop HIV stigma show” in the commune of Gihanga on the 3rd of December. I was very privileged to support them to organise this show for the third time.
During the opening speech I pointed out that it is very sad to see people still dying because of AIDS in 2022. And how shocking it is to hear children are still born with HIV, or of people who stop their medication because they heard they are Undetectable. This shows the need for all these talents to keep up their support to empower communities in Gihanga, Bubanza and all of Burundi on key health messages around HIV and AIDS.
The show was all about using our community’s talents to empower people living with or affected by HIV and AIDS to learn about and build their capacity to fight HIV & AIDS and address HIV stigma. Combining various talents and arts forms is a great way to bring HIV education, and I am glad the Inyambo Stars share this passion with me. Share our talent and break HIV stigma!
So, we brought together different talents: The fashionistas of Inyambo stars, the Indigenous Batwa Cultural group Ubumwe from Gahwazi, musical youth of Inyambo Voices, the supertalented artist Didy Love, and many more. Together we created a fantastic day for the community of Gihanga to remember. In all the performances key messages around HIV/AIDS came back like “fight HIV and AIDS but don’t stigmatize people living with HIV”, “Do HIV testing” and “Take medication every day”.
Here is an impression of the day:
Getting ready for the show!
Opening the “Stop HIV stigma show”
Opening the show through traditional Burundian dance by the Batwa Cultural group Ubumwe
The fashionistas from club Inyambo Stars want to contribute to empowering young people to change the narrative on HIV and AIDS by normalizing the disease. Their wish is to organise more campaigns using fashion as an arts form to bring health messages beyond Gihanga, across Burundi.
Gihanga music artist Didy Love, proud member of Inyambo stars, did an energetic performance while also sharing key HIV messages
Inyambo voices shared their recently released song on fighting HIV stigma
Our common goal as artists was to make sure that as many as possible young people would be able to engage with us on this day. I believe that can one day they can become our hivstigmafighters, that they will be listened to by other youth and will help to build a new generation that is open minded and better informed about HIV and AIDS. This is a how we equalize the system.
I would like to thank the Administrator of Gihanga commune who gave us the permission for this great day and sent his first adviser to join us on. It is great to see them engage in our community and see what Inyambo Stars and other talents are able to show and give back to their community. I was also pleased by the presence of RBP+ and how they appreciated the support given by the Youth in Gihanga. Finally thanks to the DJs MC Chadou and MC Jerome, and Zoe Brand designers. Together we showed that one day we will win this battle!
Partners of the “Stop HIV stigma show”
So this was the third “Stop HIV stigma show” in Gihanga community and I hope there are more to come. I am really excited to continue my support to Inyambo Stars and others to organise their next event. If you want to support them please do, they will be very grateful to continue developing and sharing their talents to break HIV stigma!
Each year during the first weekend of September the Airborne March, commemorating the 1944 battle of Arnhem, is organised in Oosterbeek. I did this beautiful walk for the first time in 2019, just before the corona pandemic. This year, my wish to walk once again with my neighbour and friend, Wanda and Norma, was finally granted. It was a very hot day but we managed to get to the finish.
What really inspired me was the diversity of people during this march! Young and old people, mothers with children in strollers, people with a disability… I asked a woman of respectable age with a stroller “How many kilometers are you walking?” and she replied with determination “10 kilometers!”. I was very proud of her. I also asked a young girl how many times she joined the march and she said that it was her 6th time already. So I asked how she did this, and she said that since she was baby, her grandparents carried her with them and that this was the first time she could walk the march all by herself!
Overall the event is real fun, even people encouraging us along the street were very engaged. Some offered us, complete strangers, to use their toilet in their home, provided water to people and pets (yes, in the Netherlands people are dog lovers), offered fruits, sweets, and biscuits. I read a lot of appreciation of what we were doing.
I concluded that it does not matter where you come from, you can participate no matter what you look like or in which shape you are. This day is really all inclusive and helps to unite people, both participants and spectators. Together we inspire each other to both continue to remember and learn from the past, yet also shape the outlines of an inclusive future.
That day I learned that remembering the past does not mean only focusing on the negativity, it is also an opportunity to educate the younger generation and encourage them and apply the learning to keep making a positive impact in our communities.
So, what if we also strive for more diversity and inclusion in our HIV community, where we still face so many issues around HIV prevention and stigma and discrimination? Where we are still struggling to reach vulnerable people that are marginalised? Let us learn from events such as the Airborne March how we in the HIV community can unite people living with HIV, onlookers, and care givers to fight HIV stigma!
For the Airborne March I can now proudly add a wing to my medal. A win-win situation since it helps me to maintain my healthy new me lifestyle and it inspires me to keep fighting together for a stigma free world.
HIV stigmafighter 